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... Creating a Therapeutic Positioning and Handling Program in the Neonatal Intensive Care Unit Jordan Hillenburg May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kate DeCleene Huber, OTR, MS, OTD Running Head: POSITIONING AND HANDLING IN THE NICU 2 A Capstone Project Entitled Creating a Therapeutic Positioning and Handling Program in the Neonatal Intensive Care Unit Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Jordan Hillenburg Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date POSITIONING AND HANDLING IN THE NICU 3 Creating a Therapeutic Positioning and Handling Program in the Neonatal Intensive Care Unit Jordan Hillenburg University of Indianapolis May 2019 POSITIONING AND HANDLING IN THE NICU 4 Section I: Abstract The Doctoral Capstone Experience (DCE) is a 14-week long clinical rotation in which students are encouraged to gain advanced clinical skills and experience with program development. The primary focus of this reviewed clinical rotation was program development and education, with a secondary focus of advanced clinical skills. The goal of this program development was to implement an educational program to promote appropriate positioning in the Neonatal Intensive Care Unit (NICU) at IU Health Bloomington Hospital in order to prevent postural and head deformities. The student created an educational resource on positioning and therapy roles in the NICU based off of themes discovered through a needs assessment. The student also created educational tools on the Infant Positioning Assessment Tool (IPAT) in order to implement the tool as a way to standardize positioning interventions. Additional efforts were made to ensure sustainability for this program such as: a therapy plan at bedside to improve follow through on therapy recommendations, a grant letter for a new safe sleep positioning device, and clearly stated safe sleep protocol for positioning device use in an open crib. Throughout the DCE, the student noted improved staff awareness and knowledge of positioning device use and IPAT scores. Additionally, the site mentor and student noted a decrease in head deformities in infants in open cribs. The site mentor will continue this program development following the students time in the NICU. POSITIONING AND HANDLING IN THE NICU 5 Creating a Therapeutic Positioning Program in the Neonatal Intensive Care Unit The Doctoral Capstone Experience (DCE) is a 14-week clinical rotation that gives the student an opportunity to gain clinical experience and explore specific practice settings through two predetermined foci. The primary focus of this DCE is program development and education of staff members in the Neonatal Intensive Care Unit (NICU). The secondary focus of this DCE is to gain advanced clinical skills in a NICU setting including feeding, manual therapy, and developmental positioning. Therapeutic positioning, also referred to as developmental or supportive positioning, has many goals (Altimier & Philips, 2016; Fern, 2011). These goals cover a wide variety of topics such as promotion of sleep (Fern, 2011), neurodevelopment (Altimier & Philips, 2016; Fern, 2011), normalizing infant tone (Fern, 2011), and providing infants with boundaries to promote the acquisition of age appropriate motor skills (Fern, 2011). However, therapeutic positioning is not a standardized treatment and is hard to maintain across multiple disciplines (Altimier & Philips, 2016; Coughlin, Lohman & Gibbins, 2010). Therefore, the aim of this quality improvement project is to implement an educational program to promote appropriate infant positioning in the NICU. Section II: Background Information and Literature Review Therapeutic positioning is an important part of occupational therapys (OT) role in the NICU (Altimier & Philips, 2016; Fern, 2011). Therapists use their knowledge of gestational age and developmental milestones to appropriately position infants and provide the needed support to meet the goals of therapeutic positioning outlined above (Altimier & Philips, 2016; Fern, 2011; Sweeny & Gutierrez, 2002). To be positioned appropriately, infants should be placed in midline POSITIONING AND HANDLING IN THE NICU 6 with his or her hands touching the face, shoulders slightly rounded, with the hips, knees, ankles and feet aligned and flexed. (Masri, Ibrahim, Badin, Khalil, & Charafeddine, 2017). This position encourages development of a normal flexor tone and acquisition of age appropriate developmental skills (Fern, 2011). Impact of Positioning on Development Infants born prematurely face a wide variety of challenges including thermoregulation, sensory processing and stimulation, and a lack of neuromotor development, which leads to difficulty maintaining proper positioning at midline (Case-Smith & OBrien, 2015). Without positioning aids or intervention, infants present with postural deformities, abnormal patterns of movement, delayed or abnormal motor development, and feeding difficulties (Fern, 2011). Some common conditions associated with poor positioning include head flattening such as: scaphocephaly, brachycephaly, and plagiocephaly, Torticollis, and Foot Drop (Fern, 2011; Sweeny & Gutierrez, 2002). As the infants mature, these side effects and conditions often interfere with development of reflexes, strength and muscle tone, bone density, and sleep patterns (Altimier & Philips, 2016; Fern, 2011). Therapeutic positioning of infants in the NICU has been shown to positively influence posture and motor function (Aucott, Donohue, Atkins, & Allen, 2002: Bakhshi, Montaseri, Edraki, Nejad, & Haghpanah, 2018; Fern, 2011; Sweeny & Gutierrez, 2002). Additionally, therapeutic positioning influences thermal regulation, neuromotor and musculoskeletal development, skin integrity, stability, and facilitates sleeping patterns (Altimier & Philips, 2016). Positioning and handling also address the Neonatal Integrative Developmental Care Models (IDC) core measure of minimizing stress and pain. Infants who are appropriately positioned are POSITIONING AND HANDLING IN THE NICU 7 more likely to appear calm, and show decreased stress signs (Altimier & Philips, 2016; Fern, 2011). Positioning Interventions Developmental positioning of infants is a therapeutic intervention used by health care professionals to achieve the previously mentioned goals with the use of positioners (Case-Smith & OBrien, 2015). Several different positioning devices exist for utilization in the NICU. Positioners such as the Dandle Wrap , Dandle Roo, Dandle Roo Lite, Z-Flo, and the Snuggle Up provide multiple benefits (Fern, 2011; Sathish et al., 2017). These positioners provide assistance with postural stability and thermoregulation, provide proprioceptive input, and help maintain a flexed midline position to promote flexor muscle development (Fern, 2011; Sathish et al., 2017). The Dandy Roo and Dandy Roo Lite also provide protection from harsh visual stimuli such as light (Fern, 2011). Additional positioning aids such as those in the Bendy Bumpers family provide the infant with flexible boundaries to maintain positioning in supine, prone, and side lying. To prevent head flattening and maintain skin integrity, tools such as the Frederick T. Frog, the Tortle (McCarty et al., 2018), and gel pillows are used to elevate the head and maintain appropriate midline head position (Fern, 2011). Implications in Occupational Therapy Practice Therapeutic positioning, though used by those with specialized training, is not a standardized intervention (Altimier & Philips, 2016; Coughlin, Lohman & Gibbins, 2010; Masri et al., 2017). Infants in the NICU are handled an average of eight times a day by NICU staff, requiring repositioning following routine care (Masri et al., 2017). To ensure proper positioning across the multiple disciplines, several NICUs have implemented staff training programs using POSITIONING AND HANDLING IN THE NICU 8 formal education, interactive workshops using computers, and bed side training (Altimier, Kenner &Damus, 2015; Masri et al., 2017; Spilker, Hill, & Rosenblum, 2016). The Infant Positioning Assessment Tool (IPAT) is an assessment tool that can be used by multiple disciplines to achieve consistent, appropriate positioning of infants (Masri et al., 2017; Spiker, Hall & Rosenblum, 2016). The IPAT provides a standardized evaluation of the infants head, neck, hips, hands, shoulders and knees, ankles and feet (Coughlin et al., 2010) (Appendix A). Altimier et al. (2017) demonstrated that comprehensive staff straining increased consistent neuroprotective care along with improved IPAT scores and decreased time spent in the NICU. However, there is still a need for standardized positioning protocols and care (Garcia Santos, Silveira Viera, Gonalves De Oliveira, Scalabrin Barreto, & Deggau Hegeto De Souza, 2018). One of the main roles of occupational therapy in the NICU setting is positioning (CaseSmith & OBrien, 2015). By addressing positioning, occupational therapists encourage improved performance in the infants occupations of feeding, rest, and sleep participation (AOTA, 2014). They also aim to improve client factors such as muscle tone, joint stability, vestibular functions, and respiratory functions by decreasing stress signs, and providing proprioceptive input (AOTA, 2014). Nightlinger (2011), describes occupational therapys role in the NICU as one that includes evaluation, treatment, education, and discharge planning, where education includes both NICU staff and family members. This can be achieved by providing education to staff members in the NICU on appropriate positioning (Altimier et al., 2017; Masri et al., 2017). Theoretical Background Developmental Care is a philosophic approach to infant care in the NICU (Altimier & Philips, 2016). It includes the traditional medical model as well as social and physical aspects of POSITIONING AND HANDLING IN THE NICU 9 the NICU environment (Peters, 1999). The overall goal of developmental care is to regulate the infants response to care by providing appropriate handling and positioning techniques (Peters, 1999). This overall goal aligns with the Lifespan Development Frame of Reference (FOR). The Lifespan Development FORs focus is to promote age appropriate skills and occupations (Cole & Tufano, 2008). Through this FOR therapeutic intervention remains client centered and be lead by the clients life stage (Cole &Tufano, 2008). Additionally, the IDC model was developed to provide NICU staff members with guidelines to care for infants and their family/caregivers (Altimier & Philips, 2016). The IDC includes seven core measures including: healing environment, partnering with families, positioning and handling, safeguarding sleep, minimizing stress and pain, protecting skin, and optimizing nutrition (Altimier & Damus, 2015; Altimier & Philips, 2016). The goal of the Lifespan Development FOR can be obtained by addressing the seven core measures of the IDC. For the purpose of this project, the focus will remain on the third core measure: positioning and handling. The student chose to utilize both the Lifespan FOR and the IDC model to guide program development due to their alignment with goals and objectives. Section III: Screening and Evaluations Creation of Needs Assessment To determine the contents of the final resource, a needs assessment was created to identify positioning needs within the NICU in the form of a questionnaire (Appendix B). Evidence found throughout the literature review and informal meetings with staff guided this process. Throughout the informal interviews conducted in the first several weeks, concerns about appropriate device use and clinical reasoning for choosing a device, were common amongst POSITIONING AND HANDLING IN THE NICU 10 nursing staff. This reflected research that identified a lack of standardized positioning intervention across disciplines in the NICU (Altimier & Philips, 2016; Masri et al., 2017). Previous studies focused on education of NICU staff on specific standardized assessments such as the IPAT, to improve consistent positioning amongst disciplines (Masri et al., 2017; Spiker, Hall & Rosenblum, 2016). For these reasons, the IPAT is included in the resource, and therefore explored through the needs assessment. Administration Two content experts reviewed the needs assessment and provided feedback prior to administration to nursing staff in the NICU. Management introduced the questionnaire during daily rounds, but participation was not mandatory. Staff had 21 days to complete the survey, which was available to them throughout their shift. The questionnaire consisted of both multiple choice and open-ended questions with the option to leave comments and/or questions at the end. Questions prompted staff to rate their comfort level and understanding of developmental positioning, and positioning devices. Results of Needs Assessment Of the 20 questionnaires administered, 12 were completed and returned. On average, staff reported 8.32 years of experience in their profession, and 5.36 years experience in the NICU setting. Common themes found across needs assessment responses included: how nurses chose to position infants (Table 1), positioning devices used (Table 2), and a need for more education (Table 3). When asked to rate their knowledge of developmental positioning on a scale of 1(no understanding) to 10 (complete understanding), 25 % (n = 3) reported that they had a full understanding. Additionally, only 25 % (n = 3) of staff reported being very comfortable when POSITIONING AND HANDLING IN THE NICU 11 asked to rate their comfort level when utilizing developmental positioning on a scale of 1(not comfortable) to 10 (very comfortable). When asked about their familiarity with the IPAT, only 8.33% (n = 1) of staff reported that they were familiar with the positioning assessment. The student provided staff with an opportunity to express comments or questions regarding positioning and/or the project. One staff member reported Id like to know how what we do in the NICU affects the babies later on (positive and negative), while another expressed their concern with device availability stating, the availability of devices is really hit or miss. Table 1 Needs Assessment Results: Current Positioning Process (n = 12) Current Positioning Process n Gestational age 6 Patient acuity 6 Infant weight 2 Previous positioning 2 NAS 2 % 50% 50% 16.67% 16.67% 16.67% Table 2 Needs Assessment Results: Positioners Typically Used (n =12) Positioners Typically Used n Bendy Bumpers 7 Dandle Roo 7 Fredrick T. Frog 7 Snuggle Up 6 % 58.33 %, 58.33 %, 58.33 %, 50% Table 3 Needs Assessment Results: Positioners Staff are Uncomfortable Using (n = 12) Positioners Staff are Uncomfortable Using n Gel Pillow 2 Z-Flow Mattress 1 Compare and Contrast in Other Settings % 16.67% 8.33% POSITIONING AND HANDLING IN THE NICU 12 Occupational therapy is utilized in a wide variety of practice settings including: schools, clinics, hospitals, homes, and communities. Services in these settings can be delivered through a direct model that involves intervention with the individual/s, or an indirect model that includes consultation (AOTA, 2014). Due to a wide variety of settings and potential client needs, the screening and evaluation process can differ greatly. In a more direct service delivery model the therapist might chose to administer more standardized assessments to identify functional deficits and impaired client factors. For example, a therapist might utilize the IPAT to score an infants positioning during regular treatment sessions (Coughlin et al., 2010). An indirect service delivery model, which guided the majority of this program development and previous staff educational programs (Altimier, Kenner &Damus, 2015; Masri et al., 2017; Spilker, Hill & Rosenblum, 2016), might include non-standardized needs assessments and informal interviews to determine areas of need within the facility. Additionally, the definition of client for the various settings will differ. In a direct service delivery model, such as treating patients in an adult outpatient clinic, the term client applies to the individual receiving services. For this program development, the term client is inclusive of the hospital staff, parents, and infants in the NICU. While there are many differences across practice settings and service delivery models, there are also similarities. The purpose of providing occupational therapy services remains the same across practice settings and service delivery models: to improve participation and performance in daily occupations (AOTA, 2014). Additionally, observation and clinical reasoning are utilized in all settings to identify areas that need improvement and barriers that the client might encounter. For this program development, the student utilized both observation and POSITIONING AND HANDLING IN THE NICU 13 clinical reasoning while shadowing staff during infant care in order to identify any problem areas that were not addressed by the formal needs assessment. Section IV: Implementation Phase Interventions Provided Positioning resource. From the needs assessment, the student identified several topics that needed to be addressed through a staff resource on developmental positioning. These included: roles of physical therapy, speech therapy and occupational therapy in the NICU setting, detailed explanation and reference for developmental positioning, information on utilizing the IPAT to standardize positioning across disciplines, and detailed information and instruction on the use of various positioning devices (Appendix C). To ensure proper use of positioning devices, handouts were created for each device used in the NICU. These handouts, which were kept in the resource binder for reference, included: name of the device, important tips for how to use the device, precautions of things to avoid/be aware of when using that particular device, and how this device promotes the infants development. A photograph of the devices being properly utilized was also included to provide a visual reference for staff. Several copies of the resource were provided in order to increase accessibility for staff members. Additionally, the student created laminated cards that were placed on the positioning device bins that provided staff with information about when the device was appropriate and how to use it. IPAT implementation. Throughout the process of creating the resource, the student collaborated with the site mentor, the manager of the clinic, and the director of the NICU to determine the best way to educate staff members on the use of the IPAT. Because March is POSITIONING AND HANDLING IN THE NICU 14 Developmental Care Month, the student created a poster to display in the NICU break room (Appendix D). This poster contained information on developmental positioning including: goals of developmental positioning, how an infant should be positioned, and a picture of the Neonatal Integrative Developmental Care Model. Following the needs assessment results and the finalized resource, the poster also described the positive impacts of appropriate positioning and the negative impacts of poor positioning on an infants development. In order to increase knowledge and utilization of the IPAT, the majority of the poster outlined the steps to complete the assessment, how to score an infants positioning, and when to reposition an infant based off of score. Additionally, the student began administering the IPAT during routine care as a way to introduce the IPAT and educate staff through example. Staff members were provided an opportunity to leave comments or questions for the student and site mentor regarding poster content. Therapy plans in the NICU. As the implementation phase of the program development progressed, the student met routinely with therapy staff to discuss NICU issues. One of these issues was a lack of follow through of therapy recommendations by NICU staff members. Previously, each infant bedside included a laminated sheet of paper that therapy staff could write special recommendations for feeding, positioning, and exercises. Unfortunately, the papers were often lost when moving infants to different beds or buried under other paperwork. To address this, the student collaborated with the speech and physical therapist at the clinic to create a therapy plan that could easily be used by all NICU staff (Appendix E). This plan included feeding recommendations (position, time limit, nipple size, and pacing), a positioning order to keep track of an infants previous positioning, positioning device inventory, oral motor exercises, POSITIONING AND HANDLING IN THE NICU 15 and sensory interventions. It was designed in order to allow the therapy staff to circle or write in recommendations for the infant, in a clear and concise way to reduce confusion. The NICU director approved the therapy plan and plans were made to create whiteboards that will be posted at each bedside to prevent the therapy plan from becoming lost. Safe sleep protocol. Another issue was a lack of consistency with positioning device use during safe sleep and open crib use. The student collaborated with the site mentor and the NICU physicians to create a handout and protocol for safe sleep and use of boundaries (Appendix F). This protocol allows infants over 36 weeks gestation to receive additional support from boundaries based on their IPAT score, and promotes positioning interventions to prevent head deformities. This protocol also includes rules for educating parents on the additional use of devices in the hospital and safe sleep practices at home. In order to prepare the infant and parents for discharge, all positioning devices will be removed at the beginning of the countdown. Nursing Competency. In order to ensure staff understanding and follow through of the positioning program, a competency was created (Appendix H). This competency is structured in the form of a short quiz and includes questions regarding: therapy roles in the NICU, the IPAT, safe sleep protocol, and results of poor positioning. Nurses will be asked to complete this competency following a developmental fair where they will have time to explore the resources in depth. Building supplies. Another need that was identified throughout the needs assessment and informal interviews with staff was a lack of resources. To address this need, the student took multiple steps and collaborated with the site mentor and other NICU therapists to advocate for the purchase of additional positioning supplies. The student took inventory of positioning POSITIONING AND HANDLING IN THE NICU 16 devices and supplies being used by infants and in those in storage to determine what would be appropriate to order. Supplies that were identified as low inventory included small Bendy Bumpers, gel pillows and Fredrick T. Frogs. Additionally, the inventory of covers for the positioning devices was lacking. Through the interviews and routine interaction with staff, the student and site mentor learned that many of the reusable supplies such as gel pillows and device covers, were being discarded due to lack of knowledge about product use. To increase knowledge about reusable products, the student included information on proper sanitation procedures on the specific device handout (Appendix H). In addition to taking inventory, the student conducted literature searches to gather information on the Shape Right positioning system to provide an alternative to traditional positioning methods (The Shape Right System, 2018). The NICU has received a sample positioner and accessories from the Shape Right Company. The student and site mentor plan to interview nursing staff about questions and concerns with the new system and help the NICU director to decide if it would be beneficial to purchase for regular use. Leadership The student demonstrated leadership skills at various times throughout the experience including: receiving/giving feedback, staying motivated, communication, creativity, and flexibility. Throughout the experience the student sought out feedback and input from other therapists working in the NICU on the resource in order to ensure that all disciplines were accurately represented. Additionally, the student provided feedback on the implementation and education of the IPAT and how to express pre and post education scores. The student experienced several barriers during the implementation phase such as: inconsistent POSITIONING AND HANDLING IN THE NICU 17 communication and availability of the NICU director, a lack of funding for new positioning devices, and resistance to change. To overcome these barriers, the student was flexible with project implementation and the time line in order to best integrate the resource and IPAT into the NICU. The student also displayed leadership through creativity to write and assemble a poster that could be used to introduce the new resource to nursing staff. Finally, the student demonstrated leadership through open and frequent communication with the site mentor, and members of other disciplines to complete the implementation process. Staff Development The main purpose of this project was to increase the quality of positioning in the NICU by educating staff members on appropriate developmental positioning devices and procedures. The student promoted staff development in several ways including: creation of developmental positioning resource and poster, education on developmental positioning and IPAT administration, and educating staff on importance and roles of therapy disciplines in the NICU. Throughout the implementation phase, NICU staff expressed and demonstrated an increase in knowledge regarding developmental positioning and use of positioning devices. Section V: Discontinuation and Outcomes Sustainability In order to ensure sustainability of the developmental positioning program, the therapists working in the NICU are now documenting IPAT scores prior to, and following therapeutic intervention. Therapeutic intervention typically coincides with the infants routine assessment and care provided by nursing staff, which allows therapy staff to continuously educate and provide the nurses with feedback on positioning. It also provides nursing staff the opportunity to POSITIONING AND HANDLING IN THE NICU 18 ask questions about administering the IPAT and use of positioning devices. Additionally, the student and therapy staff are advocating for the IPAT to be included in the template for nursing staff documentation. This will encourage continued use of the IPAT when therapy staff is not present. The director of the NICU also set a date for a developmental fair which will allow nursing staff to further discuss their positing device questions and make requests for new positioners. New positioning devices will be ordered based off of results from the students needs assessment and nursing staff report. The student also collaborated with the physical and speech therapist at the clinic to promote sustainability. The physical therapist plans to monitor infant head shape on a routine basis in order to prevent head deformities, which will be logged on the therapy plan. Additionally, all three disciplines plan to utilize the therapy plan at bedside to promote follow through on therapy recommendations for feeding and positioning. The therapy plan includes a list of positioners to be used with each infant, which will help to guide nursing staff with positioning when therapy team is not present. As previously stated, the student created a safe sleep positioning protocol that will provide nursing staff with set guidelines for positioning device use in open cribs. In order to make the protocol sustainable and easily integrated into routine care it will be used in conjunction with the therapy plan at bedside. Meeting a Societal Need The student met the societal need for a consistent positioning protocol and developmental care for NICU infants throughout the entirety of the DCE experience. Without positioning aids or intervention, infants present with postural deformities, abnormal patterns of movement, POSITIONING AND HANDLING IN THE NICU 19 delayed or abnormal motor development and feeding difficulties (Fern, 2011). As previously mentioned, there are several conditions that can result from poor positioning (Fern, 2011; Sweeny & Gutierrez, 2002). As infants mature, these conditions often interfere with development of reflexes, strength and muscle tone, bone density, and sleep patterns (Altimier & Philips, 2016; Fern, 2011). These long-lasting side effects can cause the infant and family to experience a high amount of stress due to the time, money, and resources needed to manage and treat those conditions. By creating a positioning program, the student hoped to decrease postural and head deformities while promoting appropriate tone. This would prevent or decrease the need for outpatient therapy, and the emotional and financial strain on families. To determine the effectiveness of the positioning program and additional resources, the student re-administered the needs assessment to nursing staff. Collection of the re-assessment took place over the course of one week. Of the 15 assessments administered, five nurses responded. If should be noted that the decrease in response rate could be explained by a decreased time for completion of the assessment. Overall, the respondents reported an increased knowledge and comfort level with the various therapy roles in the NICU and developmental positioning. The majority of nurses also reported familiarity with the IPAT and reported a comfort level of 8 or above (1 not comfortable and 10 being very comfortable) (n = 4). None of the respondents reported feeling unsure of positioning device use. Additionally, when asked to leave questions or comments for the student, one respondent stated I feel much more comfortable using our positioners. The same respondent also stated, Thanks for this, I learned a lot. Section VI: Overall Learning POSITIONING AND HANDLING IN THE NICU 20 Communication Communication was at the forefront of program development and collaboration throughout the DCE. The student demonstrated effective communication with the client, colleagues and other healthcare providers. For this DCE the client included the entire NICU staff as well as the outpatient clinic manager. When communicating with the client, the student had open communication with nurses, doctors, and other NICU therapists. Open mindedness, understanding, and flexibility were required when communicating with healthcare professionals who have unpredictable schedules and have countless responsibilities. To make sure the communication process was most convenient for them, the student took initiative to seek them out and make needs, questions, and idea proposals quick and concise. Correspondence took the form of emails and phone calls when an in person meeting was not possible. Additionally, while educating nurses it was important to remember to approach the idea of education and teaching as a service instead of a requirement. In order to build rapport and increase effectiveness of the program, the student chose to communicate new program guidelines and protocols through example rather than a written competency or checklist. When providing feedback on poor positioning, the student made sure that her body language communicated openness for comments or questions while also focusing on things they had done correctly. When communicating with families, the student made sure to use the appropriate language while educating families on positioning techniques before and after discharge. In addition to positioning in the crib, the student and site mentor provided families with positioning advice during feeding and tummy time. The student made an effort to demonstrate the same openness when interacting with families as with colleagues. When parents were not present POSITIONING AND HANDLING IN THE NICU 21 during therapy sessions, the student and site mentor left special notes for the parents describing things they could do to help an infants positioning when they are at the hospital. Finally, the student demonstrated professional communication skills when interacting with the NICU community and public. Throughout the DCE, the site mentor and student reached out to other NICU therapists in and outside of the hospital network to collaborate and gain feedback on the positioning resource and the safe sleep protocol. These communications mostly occurred through email, but still provided the student with valuable information and suggestions for the program development. Additionally, the student drafted a grant proposal to be used at the NICUs discretion that details the significance of the new positioning program and the importance of having the funds for new positioning devices. Leadership and Advocacy As previously mentioned, the student demonstrated several various aspects of leadership throughout the DCE experience. The most observable example of leadership is the introduction and implementation of the IPAT in the NICU. This task required the student to be flexible when interacting with other healthcare professionals and to be open to suggestions from more experienced staff members. It also required the student to show creativity and initiative to come up with effective ways to introduce new educational material to staff while maintaining rapport with the nurses. While working to implement a new positioning program and address items found through a needs assessment, the student was also able to advocate for the OT profession in several aspects. Firstly, many of the nurses who completed the needs assessment were unsure of the role that occupational therapists played in the NICU setting. To address this need, a diagram of the POSITIONING AND HANDLING IN THE NICU 22 various roles of speech, physical and occupational therapy was included in the positioning resource. This, along with the students interaction with nurses at the infants bedside, led to more questions regarding the OT profession, and positioning interventions. Advocacy also occurred through the program development goal of promoting appropriate positioning and acquisition of age appropriate developmental skills. The student advocated for the improved developmental care of infants throughout the entirety of the DCE through means of literature searches, creation of resources and protocols, education of staff, and advocating for additional positioning devices. Conclusion Throughout this program development, the student gained professional skills including: flexibility, communication, initiative, creativity, and problem solving throughout the course of the DCE. The student successfully created a developmental positioning program and educated nursing staff on the importance of utilizing positioning to improve neonatal infant outcomes. The student observed improvement in IPAT scores, positioning device use, head shape, and knowledge of occupational therapys role in the NICU throughout the course of the 14-week experience. Continuation of the program by NICU therapists and the site mentor will ensure long term sustainability which, in turn, should lead to a long-lasting effect on infant care. POSITIONING AND HANDLING IN THE NICU 23 References Altimier, L., & Phillips, R. (2016). The Neonatal Integrative Developmental Care Model: Advanced Clinical Applications of the Seven Core Measures for Neuroprotective Family-centered Developmental Care. Newborn & Infant Nursing American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). 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Use of a Midliner Positioning System for Prevention of Dolichocephaly in Preterm Infants. Pediatric Physical Therapy: The Official Publication Of The Section On Pediatrics Of The American Physical Therapy Association, 30(2), 126134. https://doi.org/10.1097/PEP.0000000000000487 Masri, S., Ibrahim, P., Badin, D., Khalil, S., & Charafeddine, L. (2018). Structured Educational Intervention Leads to Better Infant Positioning in the NICU. Neonatal Network: NN, 37(2), 7077. https://doi.org/10.1891/0730-0832.37.2.70 Nightlinger, K. (2011). Developmentally Supportive Care in the Neonatal Intensive Care Unit: An Occupational Therapists Role. Neonatal Network, 30(4), 243248. https://doi.org/10.1891/0730-0832.30.4.243 Peters, K. L. (1999). Infant handling in the NICU: does developmental care make a difference? An evaluative review of the literature. The Journal Of Perinatal & Neonatal Nursing, 13(3), 83109.Retrieved from https://ezproxy.uindy.edu/login url=http://search.ebscohost.com/login.aspx direct=true&db=mnh&AN=10818863&site=ehost-live POSITIONING AND HANDLING IN THE NICU 25 Sathish, Y., Lewis, L. E., Noronha, J. A., George, A., Snayak, B., Pai, M. S., Purkayasth, J. (2017). Clinical Outcomes of Snuggle up Position Using Positioning Aids for Preterm (27-32 Weeks) Infants. Iranian Journal of Neonatology, 8(1), 16. https://doi.org/10.22038/ijn.2016.7709 Spilker, A., Hill, C., & Rosenblum, R. (2016). The effectiveness of a standardised positioning tool and bedside education on the developmental positioning proficiency of NICU nurses. Intensive & Critical Care Nursing, 35, 1015. https://doi.org/10.1016/j.iccn.2016.01.004 Sweeney JK, & Gutierrez T. (2002). Musculoskeletal implications of preterm infant positioning in the NICU.Journal of Perinatal & Neonatal Nursing, 16(1), 5870. Retrieved from https://ezproxy.uindy.edu/login?url=http://search.ebscohost.com/login.aspx ?direct=true&db=rzh&AN=106952558&site=ehost-live POSITIONING AND HANDLING IN THE NICU Appendix A Infant Positioning Assessment Tool (IPAT) IPAT Infant Position Assessment Tool Mary Coughlin RN, MS, NNP, Global Clinical Services Managers, Childrens Medical Ventures Introduction The Infant Position Assessment Tool (IPAT) is a six-item tool with cumulative scores ranging from 0 to 12. It was developed as a teaching tool to standardize developmentally supportive positioning practices in the NICU and provides a method for evaluation of those positioning practices. Content validity of the IPAT is based on research evidence and opinions from both clinical experts and researchers in developmental care. How to use the tool (A, B, Cs) A) The new user can review the various body part indicators and view least favorable to most favorable infant positions across each body part domain. B) Once this baseline information is assimilated by the clinician s/he is ready to provide consistent developmentally supportive positioning. Using the tool as a reference, the clinician can position the infant optimally to promote musculoskeletal development, comfort and sleep. C) The tool is also used to assess the infants position and repositioning needs prior to engaging in a caregiving interaction. Spontaneous movement is a natural phenomenon for infants; however, in the absence of therapeutic positioning supports, these spontaneous movements may leave the infant stranded in a suboptimal position. Completing an IPAT with each caregiving exchange enables the developmentally supportive clinician to identify infant movements that may benefit from positioning supports as well as ensure that the infant is repositioned appropriately to promote comfort, sleep and musculoskeletal development. Printer JH 09/04/09 MCI 4102811 PN 1066945 IPAT scores An optimal IPAT score ranges between 10 to 12 points. There are several circumstances that may impede your ability to provide that degree of optimal positioning (e.g., infants with various venous or arterial access needs, drains, surgical sites, etc.), which is why it is so important to document the variance in your ability to provide optimal positioning for each infant. In general, scores less than 8 indicate that the infant is in need of positioning support that offers containment, promotes flexion and ensures proper body alignment. 26 POSITIONING AND HANDLING IN THE NICU 27 IPAT Infant Position Assessment Tool Patients name: Corrected gestational age: Clinicians name: Date/time of assessment: Indicator 0 1 2 Score Shoulders retracted Shoulders flat/in neutral Shoulders softly rounded Hands away from the body Hands touching torso Hands touching face Hips abducted, externally rotated Hips extended Hips aligned and softly flexed Knees extended, ankles and feet externally rotated Knees, ankles, feet extended Knees, ankles, feet are aligned and softly flexed Rotated laterally (L or R) greater than 45 from midline Rotated laterally (L or R) 45 from midline Positioned midline to less than 45 from midline (L or R) Neck hyperextended, flexed Neck neutral Neck neutral, head slightly flexed forward 10 Shoulders Hands Hips Knees, ankles, feet Head Neck Ideal cumulative score = 10-12 Total score POSITIONING AND HANDLING IN THE NICU 28 Appendix B Positioning of Infants in the NICU Needs Assessment Please state the following Number of Years in your profession: _____Number of years experience in NICU setting______ 1. How would you rate your understanding of developmental positioning? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 2. How comfortable are you with the developmental positioning of infants? Not comfortable 1 2 3 4 5 6 7 8 9 10 Very Comfortable 3. How would you rate your understanding of the negative impacts of poor positioning? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 4. How would you rate your understanding of the positive impacts of developmental positioning? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 5. How would you rate your understanding of positioning tools and devices (i.e. Frogs, gel pillows, etc.)? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 6. Are you familiar with the Infant Positioning Assessment Tool (IPAT)? Circle one. Yes No 7. If you answered yes to question 6, how would you rate your understanding of the IPAT? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 8. If you answered yes to question 6, how would you rate your comfort level administering the IPAT? Not comfortable 1 2 3 4 5 6 7 8 9 10 Very Comfortable POSITIONING AND HANDLING IN THE NICU 29 9. How would you rate your understanding of therapy intervention in the NICU? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 10. How would you rate your understanding of various therapy roles in the NICU setting (i.e. Occupational, physical and speech therapies)? No understanding 1 2 3 4 5 6 7 8 9 10 Full understanding 11. How would you rate your knowledge on when positioning and boundaries are needed? No knowledge 1 2 3 4 5 6 7 8 9 10 Fully Knowledgeable 12. Please describe your current positioning process below. How do you decide when/how to position? 13. Please list the positioners you typically use when positioning infants. 14. Please list any positioners for which you are unsure of the use or uncomfortable using. Comments or Questions: POSITIONING AND HANDLING IN THE NICU Appendix C Resource Outline 1. Role of therapy in the NICU a. OT, PT, SPT, 2. Description of Developmental Positioning a. Definition b. Tie in with the IDC model for NICU 3. Proper positioning a. What it looks like b. What are the positive impacts of proper positioning long term c. What are the negative impacts of negative positioning long term i. Conditions (head shape, tactile defensiveness, self regulations, deformities) 4. Use of Positioners a. Full body i. Dandle roos ii. Snuggle ups iii. Swaddle iv. Halo b. Tools i. Bendy bumper ii. Frog iii. Towel roll iv. Gel pillow v. Tortle 5. IPAT a. Administration b. Scoring c. Copy of the assessment 30 POSITIONING AND HANDLING IN THE NICU Appendix D Developmental Month Poster 31 POSITIONING AND HANDLING IN THE NICU Appendix E Therapy Plan for NICU Infant 32 POSITIONING AND HANDLING IN THE NICU 33 Appendix F Safe Sleep/Boundaries Protocol ! Open Crib Procedures o Positioning devices used in open crib for head shape and midline control " Tortle Schedule wear time based on feeding/care schedule. 3 hours of wear and 3 hours off. " Gel Pillow and Frog Gel Pillow and Frog used together can be used when an infant is not in the Tortle. Gel Pillow should be positioned under the head and shoulders. Legs of the Frog should be placed around top of babys head and under sides of gel pillow to help the infant maintain midline position. o Bendy Bumpers SHOULD not be used in open crib ! Boundaries o Infants less than 36 weeks should ALWAYS have boundaries. o The need for boundaries for Infants that are 36 weeks or older will be determined by their IPAT scores and head measurements in which therapy will assess and have written on therapy plan at bedside. " Infants who score 8 or below on the IPAT and/or have torticollis or Plagiocephaly/Scaphocephaly will require continued use of boundaries as determined by therapist and physician. " Positioners will be circled on therapy plan if needed or positioners will be X out if not recommended (or if there is plan for discharge within 1 week). ! Discharge o Infants that are expected to go home in 1 week and/or on countdown should practice safe sleep procedures " No positioning devices POSITIONING AND HANDLING IN THE NICU 34 Appendix G Nursing Competency on Positioning and Safe Sleep Protocol 1. Please match the following therapeutic interventions to the correct discipline Readiness for PO feeding _______ A. Physical Therapy Sensory Regulation and _______ Tolerance to Handling B. All Disciplines Gross Motor Skills ______ C. Speech Therapy Positioning_____ D. Occupational Therapy 2. Which of the following would receive a score of 2 on the IPAT? Circle One. 3. According to the positioning/boundary protocol, when is the best time to take out boundaries? a. When an infant reaches 36 weeks gestational age b. If an infant scores below an 8 on the IPAT in an open crib and is not on a countdown c. Infant is on a countdown to discharge home d. All of the above 4. Why do we use positioners? Circle all that apply a. Promotes neuromuscular and musculoskeletal development b. Promotes appropriate sleep patterns c. To decrease proprioceptive input d. To decrease chance of postural and head deformities 5. Please list 2 reasons we would use a Freddy Frog to position an infant. 1_____________________________________________________________________________ 2_____________________________________________________________________________ POSITIONING AND HANDLING IN THE NICU 35 POSITIONING AND HANDLING IN THE NICU Appendix H Example of Positioning Device Handout with Sanitary Instructions 36  ...

... The Role of Occupational Therapy in the Design of an Accessible and Inclusive Playground for East Washington Elementary School Jonica Paige Hoke May 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Taylor McGann, MS, OTD, OTR Running head: ACCESSIBLE AND INCLUSIVE PLAYGROUND A Capstone Project Entitled The Role of Occupational Therapy in the Design of an Accessible and Inclusive Playground for East Washington Elementary School Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Jonica Paige Hoke Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date ACCESSIBLE AND INCLUSIVE PLAYGROUND 1 Abstract East Washington Elementary School needed a new playground that was more accessible and inclusive for children of all developmental abilities. The doctoral capstone student used current evidence to determine features of accessible and inclusive playgrounds and presented these findings to school officials. These features included pour-in-place rubber surfacing, accessible routes between play components, and ground level play components to provide sensory stimulation. The doctoral capstone student advocated and lead the development of the inclusive playground project through meeting with playground company representatives, participating in a newspaper interview, writing a donor letter, creating a playground Facebook page, and completing five grant applications focused on purchasing individual, ground-level play components and accessible playground surfacing. Following the completion of the students doctoral capstone experience, school officials are better equipped with the knowledge and specific tools required to begin construction to make the school playground more inclusive for children of all developmental abilities. An inclusive playground is critical to decrease the likelihood of peer isolation on the playground and the potential for occupational deprivation (Moore & Lynch, 2015). ACCESSIBLE AND INCLUSIVE PLAYGROUND 2 Literature Review Introduction Occupational therapists strive to empower individuals, groups, and communities to fully participate in meaningful occupations by identifying and addressing internal and external barriers to occupational performance (American Occupational Therapy Association, 2014). For children, one of the most meaningful occupations is play, defined by Parham & Fazio (1997, p. 252 ) as any spontaneous or organized activity that provides enjoyment, entertainment, amusement, or diversion. This occupation includes both play exploration, or identifying appropriate play activities including exploration play, practice play, pretend play, games with rules, constructive play, and symbolic play and play participation or participating in play, maintaining a balance of play with other occupations, and obtaining, using and maintaining toys, equipment, and supplies appropriately (American Occupational Therapy Association, 2014, p. S21). Numerous studies have shown that a childs environment can either restrict or enable a childs participation in the occupation of play (Moore & Lynch, 2015; Egilon & Traustadottir, 2009; Stanton-Chapman & Schmidt, 2016). Besides a childs home, their school is the setting in which they spend the majority of their time. Based on this information, it is important for occupational therapists to consider the quality of play that children are able to participate in while they are in the school environment. Children who do not have appropriate play environments at home or at school are at risk for occupational deprivation, or an inability to participate in a meaningful occupation because of barriers or restrictions outside of ones control (Moore & Lynch, 2015). ACCESSIBLE AND INCLUSIVE PLAYGROUND 3 Importance of Playground Play The most commonly recognized play environment found in elementary schools is the schools playground. On the school playground, children participate in many different types of activities including playing on equipment, organized sports and activities, active and chasing games, traditional playground games, nature play, rough and tumble play, anti-social behavior, and non-engagement in active play (Massey, Ku, & Stellino, 2018). According to Massy, Ku, and Stellinos 2018 study, participation in different playground activities is influenced by factors such as gender and the presence or absence of play-based interventions in elementary schools, such as play activities organized by adults. The benefits of play are widely supported in literature and include improving gross motor abilities, social skills, self-esteem, self-confidence, and emotion regulation (Miller et al., 2016). In addition, play helps children build and master important developmental skills, develop cognitive reasoning, and express their individuality (Nestor & Moser, 2018). A study by Brez and Sheets (2017) found that children in grades 3-5 demonstrated improved sustained attention following play during recess. Hyndman, Benson, and Telford (2016) reported additional psychological benefits including improved intrinsic motivation, competence, and a sense of belonging. A reduction in play has both physical and psychological consequences including an increase in childhood obesity and antisocial behavior (Howard, Miles, Rees-Davies, & Bertenshaw, 2017). ACCESSIBLE AND INCLUSIVE PLAYGROUND 4 Accessibility and Inclusivity of School Playgrounds While the benefits of playground play are widely recognized, some children, particularly children with disabilities, are at risk for difficulties accessing playground equipment appropriately (Moore & Lynch, 2015). Accessibility refers to the fit between an individuals functional capacity and environmental demands, and is protected by official accessibility guidelines such as the Americans with Disabilities Act (Moore & Lynch, 2015). Children who are unable to access playground equipment due to the physical playground environment are at risk for decreased quality of play and decreased interactions with peers. This decreased social interaction may potentially lead to secondary disabilities, or disabilities resulting from problems related to ones primary disability (Moore & Lynch, 2015). While accessibility is an important feature for school playgrounds, the concept of inclusivity is of equal concern. According to the Accessible Playground Toolkit (Indiana Department of Natural Resources Division of Outdoor Recreation, 2016), inclusivity refers to the right of all individuals to participate in appropriate activities with their peers. Children with disabilities that are developmental, social, or sensory in nature may find challenges with playgrounds other than accessibility. For example, Stanton-Chapman and Schmidt (2016) report that children with autism may wander aimlessly around playgrounds that do not meet their sensory needs. The authors also note that equipment adapted for children with physical disabilities may segregate children, especially if the equipment is located in its own area (Stanton-Chapman & Schmidt, 2016). ACCESSIBLE AND INCLUSIVE PLAYGROUND 5 Theoretical Framework In order to design an accessible, inclusive elementary school playground, school officials and playground contractors must consider a variety of factors. Occupation-based models, such as the Person-Environment-Occupation-Performance (PEOP) model can assist occupational therapists with this process. The focus of the PEOP model is on how a variety of elements related to the client, their environment, and the occupation that is meaningful to them, can affect their occupational performance (Cole & Tufano, 2008). In order to maximize play participation among children at East Washington Elementary School (EWES), one must consider how aspects of the playground environment may support or hinder play based on physiological, psychological, neurobehavioral, cognitive, and spiritual factors (Cole & Tufano, 2008). Erik Eriksons theory of psychosocial development provides a theoretical framework to understand the importance of play and how play during middle childhood impacts a childs development. Erikson proposed that individuals move through 8 stages of psychosocial development, with each stage having a crisis that must be solved before moving on to the next stage (Cole & Tufano, 2008). Stage 4 occurs during middle childhood, with the crisis of industry (accomplishment) versus inferiority. In this stage, children are constantly comparing themselves to their peers and competing for recognition and achievement (Cole & Tufano, 2008). In terms of play, children need to be able to fully participate in the same activities as their peers. If children are not able to participate in play, they may be excluded and ridiculed by peer groups, leading to feelings of inferiority and low self-esteem. By helping to design a playground that is more inclusive for a variety of developmental needs, the hope is to foster a sense of belonging and accomplishment when children are able to play with their peers. ACCESSIBLE AND INCLUSIVE PLAYGROUND 6 Designing an Accessible and Inclusive Playground One factor to consider in the design of an accessible and inclusive playground is how children with physical disabilities will be able to utilize the playground equipment. A scoping review conducted by Moore and Lynch (2015) identified a variety of playground features that made playground play difficult for children with physical disabilities including inappropriate ground cover, inaccessible routes, insufficient ramps leading to play equipment, and an imbalance between the amount of elevated and ground level play components. Stout (1988) was an early advocate for playground accessibility reporting that sand and pea gravel for surfacing can make play difficult for children that use mobility devices such as wheelchairs. He reports that rubber surfacing can increase both safety and mobility (Stout, 1988). For playgrounds with multiple components or activity areas, there should be a legible and accessible pathway between these components (Masiulanis, 2014). Moore and Lynch (2015) report that children are often limited in play experiences by being unable to reach elevated components or having ground-level components that lack diversity. Another consideration frequently cited in the literature is related to providing equipment to meet a variety of sensory modulation needs. Children with sensory processing disorder demonstrate many differences related to playground play including avoiding team activities, using simpler play schemes, and participating in more solitary play (Miller et al., 2017). Equipment with a variety of sensory-related features can help to facilitate the play of children with sensory needs. For example, gliders can provide gentle vestibular stimulation, playground slides of different sizes and varieties can assist with gravity exploration, and climbing structures provide proprioceptive input. In addition, playgrounds can be created with equipment to include a variety of colors, textures, and noises (Stout, 1988). ACCESSIBLE AND INCLUSIVE PLAYGROUND 7 Lastly, factors related to playground equipment and layout must be considered to encourage socialization and prevent children of varying abilities from being segregated. Social participation is important for children in order to develop peer relationships and transition into adulthood (Stanton-Chapman & Schmidt, 2017). The consideration of social factors helps to further demonstrate the important distinction between accessibility and inclusion. Moore and Lynch (2014) reported finding playgrounds with accessible structures that were segregated from the rest of playground. Segregating play areas for children with disabilities puts them at risk for decreased socialization and exclusion from typically developing peers (Moore & Lynch, 2014). Masiulanis (2014) describes how many modern play structures include transfer decks so that individuals who use wheelchairs can transfer on to the play surface. However, when a child must crawl around to access the structure, that structure does not promote social inclusion with peers (Masiulanis, 2014). Conclusion In conclusion, elementary school playgrounds are frequently flawed in that their elements are not accessible and inclusive for children who have a variety of play-related needs and interests. Play is a critical occupation for school-aged children and impacts a childs physical, social, and emotional development. Occupational therapists can utilize the Person-EnvironmentOccupation-Performance (PEOP) model to assist with identifying factors related to the child and the playground environment that may support or hinder their play exploration and play participation. With a wide array of knowledge regarding child development and environmental modifications, occupational therapists are key consultants for school officials and playground contractors hoping to design a playground that will fit the needs of all of their students. ACCESSIBLE AND INCLUSIVE PLAYGROUND 8 Needs Assessment A needs assessment was completed by analyzing the current playground environment at EWES as well as completing interviews with current students. These assessment methods allowed for gaining important information about the current physical barriers for a safe, inclusive play environment as well as insight into students wants and needs for their new playground. The environmental assessment consisted of a playground site visit to look for features proposed by Moore & Lynch (2015) as barriers to inclusive play. During interviews, students were asked a variety of questions aimed at increasing understanding of their play preferences and behaviors. Moore & Lynch (2015) described 4 playground features that make play difficult for children with disabilities including: inappropriate ground cover, inaccessible routes, lack of ramps leading to elevated play components, and an imbalance between elevated and ground level components. All 4 of these features are present on the current playground at EWES and are shown below in figures 1-4. Figure 1. This pea gravel is the current ground cover that is used under the playground equipment. This surfacing would make it very difficult for a child who uses a wheelchair or other mobility device to access the playground equipment. ACCESSIBLE AND INCLUSIVE PLAYGROUND 9 Figure 2. These barriers used to contain the pea gravel demonstrate an accessible route between play components. Children who use a wheelchair or other mobility device would find difficulty moving from the blacktop area into the play area shown. Figure 3. This photo demonstrates the elevated component of the playground that lacks a ramp. ACCESSIBLE AND INCLUSIVE PLAYGROUND 10 Figure 4. This is the playgrounds second elevated component. This equipment, as well as the equipment in figure 3 provide no ground level play opportunities. These play areas that are inaccessible for children with physical disabilities put children at risk for decreased socialization and exclusion from typically developing peers (Moore & Lynch, 2014). Decreased socialization and exclusion is critical to prevent due to social participation being essential for children to develop relationships and transition into adulthood (Stanton-Chapman & Schmidt, 2017). In addition to these barriers for children with physical disabilities, the current playground environment does not provide a wide variety of features for sensory exploration or equipment to encourage socialization between children of varying abilities. According to Stout (1998), children with sensory needs would benefit from new playground equipment that provides a wide variety of opportunities for proprioceptive input, gravity exploration, and vestibular stimulation, as well as a wider variety of colors, textures, and noises. These opportunities are currently limited, even for children who are able to able to overcome the pea gravel and the barriers used to contain it. ACCESSIBLE AND INCLUSIVE PLAYGROUND 11 Following completion of the environmental assessment, interviews with EWES students were completed in order to gain a better understanding of students play behaviors as well as what they would like to see on their new playground. Twenty-five children participated in interview groups of two to three students. The 25 children included 10 males and 15 females. The group consisted of three children in kindergarten, two children in first grade, eight children in second grade, seven children in third grade, and five children in fourth grade. The small groups were each asked the same three interview questions followed by an opportunity for the children to look at three potential options for the new playground area. The first question that the children were asked was as follows: What do you like to do on the playground? All answers given fell into the following seven categories: kickball, tag, climbing, hanging on the rings, swinging, sliding, and hiding from boys. The most common activity reported among the 25 children was climbing. Not surprisingly, when asked what their favorite part of the playground was, the most common answers were related to monkey bars or other bars on the playground. Children also reported that they enjoyed the purple equipment with spinning rings, the slides, and the swings. The children interviewed were also asked: If you got to design your own playground for school, what would you put on it? and How does playing on the playground make you feel? Children reported that they would design a playground with more places to climb, more places to hide (for tag), more swings, and a new jungle gym to climb on. When asked about their feelings while playing, most children said it made them feel happy, good, and fun. One fourth grade student stated: Amazing. It's like weve had to do work all day but now we get to finally get outside and get some fresh air. ACCESSIBLE AND INCLUSIVE PLAYGROUND 12 Comparison of Project to Existing and Emerging Areas of OT By working with East Washington Elementary to develop an inclusive playground, the OT student is gaining advanced skills related to complex environmental modifications, which is considered to be an emerging practice area. The American Occupational Therapy Association (AOTA) recently published an official position paper in 2015 stating ...the evaluation and provision of complex adaptations and modifications to environments where people complete daily life occupations is within the scope of occupational therapy practice (AOTA, 2015, p. 6913410010p1). Complex environmental modifications go beyond basic environmental modifications such as grab bars or tub transfer benches and may include working with team members like contractors, architects, or interior designers (Young, Van Oss,Wagenfeld, 2014). OTs role in complex environmental modifications for a school playground is similar to the role of OT in home modifications. The goal of home modifications is to change an individual's living space in order to make it more secure, safe, and user-friendly to increase independence (Fagan & Sabata, 2016). Similarly, the goal of complex environmental modification is to alter, modify, or create a new space for an individual, group, or community that will increase their daily participation in that space (AOTA, 2015). The areas of home modifications and complex environmental modifications differ in that home modifications may include more simple recommendations such as low-tech technology, off-the-shelf equipment, and adaptive hardware (Fagan & Sabata, 2016). Complex environmental modifications, as the name implies, include more advanced structural changes and assistive technologies that may not be found at retail or medical equipment stores (AOTA, 2015). This project has both similarities and differences to school-based OT, which is a traditional area of practice. Serving as a consultant for the modification of a school playground ACCESSIBLE AND INCLUSIVE PLAYGROUND 13 has the same goal as traditional school-based practice: to improve occupational performance and participation (AOTA, 2015; AOTA, 2016). However, this project does not involve a significant amount of time spent directly with students, like school-based practice. While school-based practice promotes occupational participation in a variety of ways including conducting activity analyses, providing assistive technology, educating teachers, and assisting with transition planning, complex environmental modifications are largely focused on how the external environment can support or hinder occupational performance. Implementation East Washington Elementary School (EWES) had been dreaming about renovating their playground area for several years. After completing many small fundraisers and receiving a large grant from the superintendent for the project, the school was ready to start making some big moves. A playground committee was organized consisting of the schools principal, PTO president, and P.E. teacher. As each committee member had a full-time job during the day, there was a need for someone who could serve as a leader and make the playground development project a top priority. I came to EWES on January 7, 2019 to advance my skills in leadership and advocacy by serving as a consultant and new member of the playground committee. My occupational therapy background provided a unique perspective during the planning stages of this project. Throughout my doctoral capstone experience, I served in a variety of leadership roles to advance the development of the new playground. Choosing playground equipment and surfacing As a future occupational therapist, I have a passion for ensuring that all individuals are able to fully participate in their meaningful occupations despite any internal or external barriers. In this case, I was evaluating the student population at EWES and their ability to participate in ACCESSIBLE AND INCLUSIVE PLAYGROUND 14 the occupation of play on their school playground. The overall goal for my doctoral capstone experience was to help EWES renovate their playground in a way to make it more accessible and inclusive for children of all developmental abilities. The first step in this process was to conduct a literature review to determine the features present in inclusive playgrounds. These features included accessible surfacing, accessible routes between play components, and a variety of both elevated and ground level play components. Following the literature review, I was more aware of the features of inclusive playgrounds and felt confident in my ability to present this information to the playground committee as well as companies providing playground equipment. The playground committee was very open to my ideas and gave me permission to obtain quotes from different companies for different types of equipment. Throughout my doctoral capstone experience, I was in constant contact with playground companies to discuss different options for layout, equipment, and surfacing. The playground committee ended up with various equipment and layout options from companies including Little Tikes Commercial, Playworld Systems, Inc. and BCI Burke Co. All potential equipment and layout options included elements of inclusive design, with some options having more inclusive elements than others. The option chosen would be dependent on the finalized budget. Grant Writing & Fundraising While at the beginning of my doctoral capstone experience EWES had approximately $80,000 set aside for playground renovation which was not enough to achieve the vision for the new playground. In addition to leading the research on playground companies and types of equipment, I also set a goal to lead fundraising initiatives through writing grants and an advocacy letter. ACCESSIBLE AND INCLUSIVE PLAYGROUND 15 At the beginning of my doctoral capstone experience, I conducted extensive research to locate grants that the school would be eligible to apply for. I created a document listing five potential grants that were available from national, state, and local funding sources. These funding sources included Lowes, Subaru Indiana Automotive, Walmart, the Kids Heart Challenge through the American Heart Association, and the Washington County Community Foundation. During my time at EWES, I completed all five of the grant applications. Completing these applications required collaboration with the playground committee and school corporation treasurer. In addition to completing the applications, I determined dates that each grant would potentially be awarded and presented this information to the playground committee to assist with the development of the playground budget. In addition to preparing grant applications, I also supported the project by writing a persuasive letter that was sent to 60 community businesses in order to acquire additional funding for the playground renovation project. This letter included an introduction of myself and my doctoral capstone project, information about the benefits of play and the role of occupational therapy, my vision for the playground, and the fundraising that has been completed so far. Each letter included a chart with donor recognition levels to show how businesses could benefit from donating to the playground campaign. These benefits were for donations ranging from $100$5,000 and included: advertisements on the EWES and EWES PTO Facebook pages, EWES website, EWES newsletter, an invitation to the playground opening ceremony, business name on a plaque displayed at EWES, and business name on a sign on the new playground. The benefits received would depend on the amount of money donated. These donor letters were mailed on March 8, 2019 and have brought in $1,650 so far. ACCESSIBLE AND INCLUSIVE PLAYGROUND 16 Advocacy In addition to leadership, another major focus area of my doctoral capstone experience was advocacy. Engaging in advocacy efforts was critical to help EWES staff members as well as the community of Washington County understand the importance of play, the role of occupational therapy in play, and the importance of EWES building a new playground that is more inclusive for children of all abilities. I served as an advocate by explaining occupational therapy and inclusive play during meetings with playground committee members as well as with playground equipment companies. In order to advocate for play and the profession of occupational therapy to the larger community, I created the East Washington Elementary Playground Facebook page and participated in a newspaper interview with a reporter for the Salem Leader, a newspaper that is distributed throughout Washington County. On the playground Facebook page, I would share information about the status of the playground renovation, recognize fundraising efforts, and information on how community businesses could get involved in the project. During the newspaper interview, I discussed the need for the new playground, the role I am playing in the project as an occupational therapy student, the importance of play, and the need for an inclusive playground environment. Leadership My leadership skills played a critical role in the advancement of the EWES playground project. Due to playground committee members having extremely busy schedules including duties as principal, teacher, and PTO president, I completed various tasks necessary to keep the project moving. For example, I was responsible for identifying a professional land surveyor and setting up a meeting with him to determine details about how the land would need to be prepared ACCESSIBLE AND INCLUSIVE PLAYGROUND 17 before the installation of new playground equipment. My leadership skills helped to get the community of Washington County and the town of Pekin to be more involved in the playground project by sharing information on the East Washington Elementary Playground Facebook page and with the county newspaper. Lastly, my leadership skills help to obtain more funding for the project. By sending out a letter to community businesses, I was able to raise an additional $750 for the playground in two weeks. I am expecting further donations from these letters. Promoting Staff Development I was able to promote staff development at EWES by educating staff members to increase their knowledge of play among school-aged children as well as the importance of inclusive play. Following this education, staff members can better recognize the need to help facilitate play during the school day so that children can receive the many developmental benefits. While my doctoral capstone experience is almost complete, staff members can use the knowledge of inclusive design during later phases of playground renovation. Funding at this time only allowed for renovation of one play area, but the next phase may include buying equipment for a grassy area that is completely bare at this time. Discontinuation & Outcome My doctoral capstone experience project responded to a variety of needs for the students, staff, and EWES as a whole. Based on the literature review and needs assessment, it was evident that EWES needed a new playground that was more accessible and inclusive for children with a variety of needs. As a doctoral capstone student, I addressed this need through a variety of leadership and advocacy efforts including advocating for inclusive design with playground committee members, working with playground equipment companies to choose inclusive ACCESSIBLE AND INCLUSIVE PLAYGROUND 18 surfacing and equipment, creating the EWES Playground Facebook page, participating in an a newspaper interview about the playground project, completing five grant applications, and writing and sending a persuasive letter to 60 local businesses to obtain more funds for the project. Following completion of the implementation phase of my project, I met with the EWES playground committee to discuss the discontinuation and outcome of the project. At this time, no final decisions have been made regarding the playground, as the committee is awaiting the results of the five grant applications that I completed. In addition, the school could potentially receive more funding from the 60 community businesses that received the donation letter a few weeks ago. Once the school receives notification from the grants that I completed, which will be during May and June, a finalized budget will be established and decisions on equipment and surfacing can be made. During the final playground committee meeting, committee members were provided a folder with all information that I had obtained from playground companies including diagrams of equipment options and quotes for equipment and surfacing. In addition, the committee members were informed of the five grants that I applied for and the approximate dates that the funds would be awarded. Committee members, as well as the schools new principal, were provided with all contact information for playground company representatives that I was in contact with during my doctoral capstone experience. During the final meeting, I informed the committee that I would remain involved in the playground development project as needed. This involvement may include continuing to update the playground Facebook page that I created, recognizing business donors, assisting with organizing a future playground opening ceremony, and ACCESSIBLE AND INCLUSIVE PLAYGROUND 19 completing all follow-up paperwork for grants that the school receives. The committee was very excited that I wanted to remain involved in the project. Overall, I was able to achieve most of the goals set for my doctoral capstone experience. While the school was not able to begin playground construction during my time there, I was able to fully advocate for the need for an inclusive playground and provide school officials with the necessary resources to put the plans into action. I completed five professional and thorough grant applications that have a good likelihood to be accepted for funding this summer. Overall Learning My doctoral capstone experience playground project was not only beneficial to East Washington Elementary, but it was beneficial for my personal development as an advocate and leader for occupational therapy services. In a rural community like Pekin, many individuals have never heard of occupational therapy and do not understand the developmental benefits of play or the importance of providing an inclusive playground environment. Through the variety of tasks that I completed for the playground project, I helped school officials, teachers, parents, community businesses, and grantors expand their knowledge of the wide scope of services that occupational therapy has to offer. While I have not yet heard back from any of the five grant applications that I have completed, I am confident that I submitted very organized and well-written proposals that are likely to be granted. My collaboration with my site mentor, other playground committee members, the school superintendent, and a seasoned grant writer helped to increase the chances for receiving funding for the playground while also expanding my leadership and advocacy skills. ACCESSIBLE AND INCLUSIVE PLAYGROUND 20 Overall, my time at East Washington Elementary for my doctoral capstone experience has helped me develop skills that will be critical for my career as an occupational therapist. My communication skills, both written and verbal, have greatly improved as a result of continuously communicating with school officials, teachers, and community members about occupational therapy and the role that I am playing in the playground development project. Participating in a newspaper interview would normally be way out of my comfort zone, but I chose to do this because I knew that it would be good practice for myself as well as good publicity for the playground. I have also greatly improved my leadership and advocacy skills during my doctoral capstone experience. Usually I am someone who prefers to be in the background rather than being in charge, but I knew that I would be taking the lead during this playground project. When I first started at EWES, many individuals were confused by the idea of an accessible and inclusive playground at first, and not really open to the idea. After providing extensive education and advocating for students who have different needs, these individuals changed their views and were more accepting of the project. If I had not came to EWES for my doctoral capstone experience, I believe that the school would end up with a very different playground at the end, potentially a playground that would deprive some children of the ability to fully participate in the occupation of play on their school playground. While I was not providing direct OT services at EWES, I was able to gain valuable experience as a leader, educator, and advocate. These advanced skills will be extremely beneficial as I transition to a career of providing direct services in a more traditional setting. I have seen first-hand how much of a difference it can make for clients when you advocate and lead initiatives for them to be able to fully participate in their meaningful occupations. ACCESSIBLE AND INCLUSIVE PLAYGROUND 21 References American Occupational Therapy Association (2014). Occupational therapy practice framework: Domain and process (3rd ed.) American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. http://dx.doi.org/10.5014/ajot.2014.682006 American Occupational Therapy Association (2015). Complex environmental modifications. American Journal of Occupational Therapy, 69, 6913410010p1-6913410010p7. doi:10.5014/ajot.2015.696S01 American Occupational Therapy Association (2016). Occupational therapy in school settings fact sheet. Retrieved from: https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/CY/Fa ct-Sheets/School%20Settings%20fact%20sheet.pdf Brez, C., & Sheets, V. (2017). Classroom benefits of recess. Learning Environments Research: An International Journal, 20(3), 433-445. doi:10.1007/s10984-017-9237-x Cole, M., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Fagan, L.A. & Sabata, D. (2016) Home modifications and occupational therapy. Retrieved from: https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/RDP/F acts/HomeMod-Occ-Therapy.pdf Howard, J., Miles, G., Rees-Davies, L., & Bertenshaw, E. (2017). Play in middle childhood: Everyday play behaviour and associated emotions. Children & Society, 31(5), 378-389. doi:10.1111/chso.12208 Hyndman, B., Benson, A., & Telford, A. (2016). Exploring the influences on childrens school playground activities. American Journal of Play, 8(3), 325-344. ACCESSIBLE AND INCLUSIVE PLAYGROUND 22 Masiulanis, K. (2014). Designing inclusive playspaces. Australasian Parks and Leisure, 17(1), 16-19. Massey, W., Ku, B., & Stellino, M. (2018). Observations of playground play during elementary school recess. Bmc Research Notes, 11(1), 755-755. doi:10.1186/s13104-018-3861-0 Miller, L.J., Schoen, S.A., Camarata, S.M., McConkey, I.K., Valdez, A., & Hampton, S. (2017). Play in natural environments: A pilot study quantifying the behavior of children on playground equipment. Journal of Occupational Therapy, Schools, & Early Intervention, 10(3), 213-231. doi: 10.1080/19411243.2017.1325818 Moore, A., & Lynch, H. (2015). Accessibility and usability of playground environments for children under 12: A scoping review. Scandinavian Journal of Occupational Therapy, 22(5), 331-44. doi:10.3109/11038128.2015.1049549 Nestor, O., & Moser, C.S. (2018). The importance of play. Journal of Occupational Therapy, Schools, & Early Intervention, 11(3), 247-262. Parham, L. D., & Fazio, L. S. (Eds.). (1997). Play in occupational therapy for children. St. Louis, MO: Mosby. Stanton-Chapman, T., & Schmidt, E. (2016). Special education professionals' perceptions toward accessible playgrounds. Research and Practice for Persons with Severe Disabilities, 41(2), 90-100. Stanton-Chapman, T., & Schmidt, E. (2017). Caregiver perceptions of inclusive playgrounds targeting toddlers and preschoolers with disabilities: Has recent international and national policy improved overall satisfaction? Journal of Research in Special Educational Needs, 17(4), 237-246 Stout, J. (1988). Planning playgrounds for children with disabilities. The American Journal of Occupational Therapy, 42(10), 653-657. ACCESSIBLE AND INCLUSIVE PLAYGROUND 23 Young, D., Van Oss, T., & Wagenfeld, A. (2014). Universal design for a lifetime: Interprofessional collaboration and the role of occupational therapy in environmental modifications. OT Practice, 19(13), CE1-CE7.  ...

... Running head: EFFECT OF COMMUNITY OUTREACH PROGRAMS Community Outreach Programs Effect on Children with Disabilities and Their Families Kelsie A. Harper May 3, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kate E. DeCleene Huber, OTR, MS, OTD 1 EFFECT OF COMMUNITY OUTREACH PROGRAMS A Capstone Project Entitled Community Outreach Programs Effect on Children with Disabilities and Their Families Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Kelsie A. Harper Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date 2 EFFECT OF COMMUNITY OUTREACH PROGRAMS Section I: Abstract Occupational therapists play a crucial role in ensuring children of all ages and abilities have equal opportunities to engage in activities and environments within the world we live. Specifically for activities occuring in community environments, occupational therapists possess skills necessary to identify facilitators that enable participantion, and barriers that inhibit engagement. However, researchers identified children with disabilities experience decreased community participation compared to children without disabilities. Identified barriers affecting community participation included availability, decreased support, and environmental modifications. Similar to results reported from previous researchers, results of a needs assessment completed with parents and caregivers of children with disabilities receiving physical, occupational, and/or speech therapy services at Reach Pediatric Therapy clinic or through First Steps, identified a need to improve community participation and increase opportunities for engagement within community environments. Parents and caregivers who completed the needs assessment reported a desire for change regarding increased support, availability of age appropriate activities, and modification to environments to enhance participation. As a result, a community outreach program for children with disabilities and their families was designed to provide children and families opportunities to engage in community activities in the presence of occupational personnel, who were to offer support and assistance as needed. The overall purpose of developing a community outreach program for children with disabilities and their families was to increase opportunities for community engagment and to improve overall community participation while utilizing social, fine motor, and gross motor skills. 3 EFFECT OF COMMUNITY OUTREACH PROGRAMS 4 Community Outreach Programs Effect on Children with Disabilities and Their Families In 2016, an estimated 12.8% of the United States population was living with a disability (Kraus, Lauer, Coleman, & Houtenville, 2018). Regarding children age five or less, 0.7% live with a disability, and for children between the ages of five to seventeen, 5.6% have a disability (Kraus et al., 2018). Occupational therapists provide services to children of all ages and focus on encouraging inclusion for children who have a diagnosis, or who may be at risk of developing various disabilities or delays (Elenko & Siegfried, 2018). Inclusion ensures all individuals are treated fair and equal, and are provided the same opportunities to engage in activities within society (American Occupational Therapy Association [AOTA], 2014a). Occupational therapists have completed training and possess the necessary skills required to identify facilitators and barriers within different contexts and environments that enable engagement and inclusion for all (Elenko & Siegfried, 2018). The goal of this occupational therapy doctoral capstone experience was to develop and implement a community outreach program for children with disabilities and their families to improve community participation. Programs can be developed and implemented to help children with disabilities and their families engage in daily life experiences alongside their typically developing peers while utilizing an occupational therapy mindset and an occupation based model to serve as an organizational and supportive guide. Section II: Literature Review Theoretical Guidance The occupation based model utilized as a structural organization guide throughout this Doctoral Capstone Experience was the Person-Environment-Occupation (PEO) model. The focus of the PEO model includes creating a maximized fit of the models three main components, the person, environment, and occupation, in order to maximize the clients overall EFFECT OF COMMUNITY OUTREACH PROGRAMS 5 occupational performance (Law et al., 1996). Within the PEO model, occupational performance is considered the interaction between the person, environment, and occupation (Law et al., 1996). Each person is viewed as a unique and continuously developing individual (Law et al., 1996). Factors that influence ones occupational performance include personal attributes such as personality, self-concept, and cultural qualities (Law et al., 1996). An individuals roles are considered to be dynamic and have the ability to change over time within different contexts (Law et al., 1996). The environmental component of the PEO model includes the context where an individuals occupational performance occurs and how ones behavior influences the specific environment (Law et al., 1996). Various contexts may consist of cultural, socio-economic, physical, social, and institutional environments (Law et al., 1996). Occupation within the PEO model is focused on meeting the persons intrinsic needs for self-maintenance, expression, and satisfaction in the context of both the individuals environment and roles (Law et al., 1996). The PEO model is an appropriate model to use as a guide for developing and implementing a community outreach program for children with disabilities and their families. It is crucial to consider how individuals, the environment, and community participation impact one another and affect occupational performance. Personal characteristics and qualities of not only children, but also families participating in the community outreach program must be considered to create an effective program that meets the needs and wants of participating children and families (AOTA, 2014b; Lawson & Foster, 2016). It is important to consider the different environments where community participation will occur in order to determine if accommodations and modifications are necessary to increase accessibility to various community environments (Anaby et al., 2014; AOTA, 2014b; Elenko & Siegfried, 2018; Fabrizi, Ito, & Winston, 2016; Law et al., 1996; Lawson & Foster, 2016; Silverman & Tyszka, 2017). EFFECT OF COMMUNITY OUTREACH PROGRAMS 6 Considerations of individual characteristics and qualities, as well as the environment in which community participation occurs, are valuable factors that can influence overall maximized occupational performance of meaningful activities for both the child and family (Anaby et al., 2014; AOTA, 2014b; Elenko & Siegfried, 2018; Fabrizi et al, 2016; Law et al., 1996; Lawson & Foster, 2016; Silverman & Tyszka, 2017). Occupational Performance Participation in occupations. Participation has been identified as a primary element for fostering health and well-being for individuals (World Health Organization, 2001). Occupations are described as a variety of activities individuals, groups, and populations participate in throughout life (AOTA, 2014b). Occupations may include basic activities of daily living to care for ones personal self, or could include activities that support ones life within the home or community and require more interaction with different environments and other individuals (AOTA, 2014b). It is crucial for individuals of all ages and abilities to both function effectively and engage comfortably during daily occupations to maximize occupational performance (AOTA, 2014b). Play. Children participate and engage in life through the occupation of play (AOTA, 2019a), which includes impromptu or structured activities that provide diversion, pleasure, and entertainment (AOTA, 2014b). The occupation of play is a critical activity in childhood that impacts a childs life in a variety of ways (AOTA 2019a; Fabrizi et al., 2016). Play participation helps to enable a child to grow, learn, and make sense of the surrounding world (AOTA, 2019a). Engaging in play activities promotes the childs growth, development, and creativity regarding a variety of skills (AOTA, 2019a). Participation in play activities promotes development of skills such as social, emotional, gross and fine motor, self-confidence, and self-help necessary for a EFFECT OF COMMUNITY OUTREACH PROGRAMS 7 childs future participation and exploration of new experiences in different environments (AOTA, 2019a). Community participation. Children of all ages and abilities may participate in community environments, which are described as settings outside of ones home where families engage (Elenko & Siegfried, 2018). Community participation involves participating and achieving positive interaction during activities occurring at a community level within various physical and social environments (AOTA, 2014b). However, researchers reported community participation as the area of participation where children experience the most difficulty compared to other settings (Khetani, Graham, & Alvord, 2013). All children and caregivers have unique personal characteristics that may impede their ability to engage and play with other children and families within a community environment (Fabrizi et al., 2016). Children with disabilities enjoy engaging in a variety of activities within different environments, but experience decreased participation regarding these activities compared to children without disabilities (Fabrizi et al., 2016). Specifically in regard to activity participation in community environments, children with disabilities engage less compared to children without disabilities (Bedell et al., 2013). Environmental factors. Occupational performance is directly influenced by environmental factors that are present in all settings where children participate in daily tasks (Anaby et al., 2014). Children engage and participate in the occupation of play to acquire developmental skills within various environments including physical and social environments (AOTA, 2014b). Physical environments consist of the natural and constructed surroundings where children engage in daily occupations (AOTA, 2014b). Social environments include the relationships, expectations, and the presence of other individuals, groups, and populations in which the child has contact with while engaging in life (AOTA, 2014b). Physical and social EFFECT OF COMMUNITY OUTREACH PROGRAMS 8 environments may support or hinder a childs occupational performance while participating in play and meaningful activities (AOTA, 2014b; Fabrizi et al., 2016). If a child experiences difficulty with effective participation within a specific environment, modifications and alterations of the environment may improve occupational performance (AOTA, 2014b). Impact of Community Participation Community playgroups allow parents and children the opportunity to participate in play and social activities within a variety of environments (Fabrizi et al., 2016; McLean et al., 2015; Strange, Fisher, Howat, & Wood, 2014). Participating in community playgroups provides positive opportunities for both the parent and child (Fabrizi et al., 2016; McLean et al., 2015; Silverman & Tyszka, 2017; Strange et al., 2014). Community playgroups provide parents and caregivers the opportunity to receive education (Fabrizi et al., 2016; McLean et al., 2015). Parents also have the opportunity to raise awareness and increase understanding of how learning can be facilitated through play activities (McLean et al., 2015). Additionally, parents reported experiencing decreased anxiety as a result of gaining social support from others attending the community playgroup (Strange et al., 2014). Additional benefits of community playgroups include building friendships and a supportive network, improving community connections, and having the opportunity to share life experiences and learn from one another (Strange et al., 2014). Participating in community playgroups allows children the opportunity to engage in play activities with peers (Fabrizi et al., 2016; McLean et al., 2015). Children with special needs who engaged in a series of community playgroup events led by an occupational therapist experienced a significant increase regarding their level of playfulness (Fabrizi et al., 2016). Engaging in community playgroup events also helped to promote play participation (Fabrizi et al., 2016) and improved family participation within the community (Fabrizi et al., 2016; Strange et al., 2014). EFFECT OF COMMUNITY OUTREACH PROGRAMS 9 Involvement in community playgroup allowed children with disabilities and their families opportunities to engage and play in the community, and contributed to increased playfulness and participation after the playgroup concluded (Fabrizi et al., 2016). Researchers who developed a weekly community group program stated children with disabilities developed an improved selfesteem, as they felt more like their typically developing siblings and peers who often participate in community and extracurricular activities, as a result of participating in the community program (Cahill, Clone, Wilson, & Moroni, 2015). Barriers of Community Participation Community Participation proposes multiple benefits and opportunities for children and families (Cahill et al., 2015; Fabrizi et al., 2016; McLean et al., 2015; Silverman & Tyszka, 2017; Strange et al., 2014); however, barriers consistently impact a childs ability to participate and achieve maximized occupational performance in community environments (Anaby et al., 2014). Multiple interrelated variables affect occupational performance within the physical and social environments in which children participate (AOTA, 2014b; Fabrizi et al., 2016). Barriers contributing to decreased community participation for children with disabilities in past research studies have been identified as physical, social, and cognitive activity demands (Anaby et al., 2014; Bedell et al., 2013), as well as, availability and adequacy of programs and services (Bedell et al., 2013). Environmental factors are more commonly reported as barriers to community participation for children with disabilities compared to children without disabilities (Bedell et al., 2013). Physical accessibility to community settings aids in facilitating social interaction for individuals with disabilities; however, unidentified barriers present within the physical and social environments of the community may inhibit complete social inclusion for individuals with disabilities (Umeda et al., 2017). Parents and guardians of children with disabilities stated there EFFECT OF COMMUNITY OUTREACH PROGRAMS 10 were decreased environmental support from the community compared to parents and guardians of children without disabilities (Bedell et al., 2013). Need for Change Regarding Community Participation Due to the presence of barriers inhibiting community participation, parents and guardians of children with disabilities reported wanting a change regarding the childs participation within the community (Bedell et al., 2013). Researchers reported completing environmental modifications and specializing the community programs improved participation, helped to promote social participation, and positively improved the well-being for children with disabilities and their families (Silverman & Tyszka, 2017). Structuring and modifying environments to meet sensory needs of individuals with disabilities provide opportunities for improved participation and engagement in activities (Lawson & Foster, 2016; Silverman & Tyszka, 2017). Controlling the number of attendants, adjusting auditory and visual input such as volume and lighting, and incorporating various sensory exhibits into the environment were crucial components to children with disabilities and their families having a successful experience during the community outing (Silverman & Tyszka, 2017). Completing modifications and adaptations of community environments and activities contributed to positive family experiences regarding community participation and improved feelings related to ones well-being for both the child and family (Silverman & Tyszka, 2017). Implications in Occupational Therapy Practice As stated in the Occupational Therapy Practice Framework, improving and maximizing occupational performance for children with disabilities and their families is extremely valuable and important because it aligns with the client-centered focus of occupational therapy which is, the therapeutic use of everyday life activities (occupations) with individuals or groups for the EFFECT OF COMMUNITY OUTREACH PROGRAMS 11 purpose of enhancing or enabling participation in roles, habits, and routines in home, school, workplace, community, and other settings (AOTA, 2014b, p. S1). The primary goal of occupational therapy is to provide individuals with the opportunity to achieve maximized health, well-being, and participation in meaningful occupations (AOTA, 2014b). Occupational therapists can use their knowledge regarding the transactional relationship among the individual, occupation, and environment to develop occupation-based activities and programming that promotes participation, growth, and development that meets the individuals needs (AOTA, 2014b; Lawson & Foster, 2016). Occupational therapists can promote engagement in meaningful occupations for individuals of all ages and abilities by identifying and providing adaptations and modifications to objects, activities, and environments where individuals participate in occupations (AOTA, 2014b; Elenko & Siegfried, 2018; Fabrizi et al., 2016). Environments are more feasible to alter and modify in comparison to trying to change a childs health condition and associated impairments (Anaby et al., 2014). Occupational therapists have the ability to modify and adapt environments and activities to improve function and participation in meaningful activities (AOTA, 2014b; Fabrizi et al., 2016). Specifically regarding community settings and participation, occupational therapists can work with children, families, and the community to identify present challenges within the environment and help bridge the gap for individuals who are navigating challenges, and help them achieve success in their lives (Elenko & Siegfried, 2018). Therefore, the purpose of developing and implementing a community outreach program for children with disabilities and their families is to maximize occupational performance regarding community participation. The community outreach program will be designed and tailored to meet the needs of children with disabilities and their families, and will EFFECT OF COMMUNITY OUTREACH PROGRAMS 12 allow these individuals to engage in fun and meaningful community activities with other children and families. Section III: Needs Assessment Participants Participants of the needs assessment included parents, guardians, or caregivers of children with disabilities within a specific geographic area, who volunteered to complete a survey questionnaire. Inclusion criteria required parents, guardians, or caregivers to have a child who was receiving occupational, speech, and/or physical therapy services at Reach Pediatric Therapy in Terre Haute, Indiana, or occupational therapy services through First Steps in Vigo County, and Vermilion County, Indiana. All survey responses from participants who completed a survey were included when analyzing the results. In total, 10 completed surveys were collected from participants and analyzed to determine outcomes and common themes. Survey Development A 12-question survey (Appendix A) was designed and used as an outcome measure. The survey questionnaire consisted of multiple choice, open-ended, and rating scale questions to investigate parent, guardian, and caregiver perceptions of community participation regarding their child with a disability and family as a whole. Questions included in the survey tool were developed based on an in-depth review of the literature and through collaboration with an occupational therapist, who specializes in pediatrics and has expertise working in community environments with pediatric clients and their families. Additionally, the PEO model was also used as a guide when creating survey questions due to the models focus on the interaction between the person, environment, and occupation (Law et al., 1996). The purpose of the survey was to gather information regarding how personal characteristics and the environment impact EFFECT OF COMMUNITY OUTREACH PROGRAMS 13 community participation for children with disabilities and their families. Participants who filled out the survey questionnaire were asked to exclude names or any other identifying information to maintain confidentiality of all participants. A pediatric occupational therapist and a clinical support specialist who work daily with this population reviewed the survey prior to distribution. Feedback received from these individuals was incorporated into the survey before distributing the survey questionnaire to the participants. To accommodate various levels of knowledge and educational backgrounds of the participants, the survey questionnaire began with describing the definition of community participation utilizing terminology from the Occupational Therapy Practice Framework: Domain and Process (3rd edition) and Promoting Inclusion: Information and Strategies in Early Childhood. Participants were first asked to identify the childs age and diagnosis due to each individual having unique personal characteristics and qualities that influence ones occupational performance (Law et al., 1996). Personal attributes may specifically impede a childs ability to engage in community activities with other children and families (Fabrizi et al., 2016). As a result, age and diagnosis of the children was desired in order to later determine if themes for community participation and activities resulted for children similar in age or with a specific diagnosis. Additional questions included on the survey regarding community participation for children with disabilities and their families focused on the following: quantity of resources, frequency of participation, current participation, yearn for participation, importance of participation, confidence during participation, barriers limiting participation, and desired changes (see Appendix A). Gathering a deeper understanding into these areas allows for the opportunity to improve community participation for children with disabilities and their families by increasing EFFECT OF COMMUNITY OUTREACH PROGRAMS 14 desired opportunities for engagement and modifying environments to better fit the needs of consumers. Survey Question Development Quantity and frequency. Children with disabilities experience decreased engagement in activities within various environments compared to children without disabilities (Fabrizi et al., 2016), especially regarding activities in community environments (Bedell et al., 2013). Participants were asked about the overall quantity of community resources within Terre Haute, Indiana. Further questions asked participants to list specific activities in which their child with a disability and family as a whole currently participate, and then to rate how often participation within these community activities occurs. Survey questions regarding quantity and frequency of participation were asked to determine if decreased community engagement for children with disabilities was associated with insufficient resources or opportunities for community engagement. Confidence. Strange et al., (2014) reported parents typically felt anxious while participating in community activities with their child with a disability; however, decreased levels of anxiety were reported after attending a community playgroup with social support. Participants were asked to rate their level of confidence regarding participating in community activities with their child with a disability. Information about ones confidence level was desired in order to discover possible trends between frequency of participation in community activities and confidence level. Importance. Several positive support opportunities for the parent and child resulted from participating in community playgroups (Fabrizi et al., 2016; McLean et al., 2015; Strange et al., 2014). For the purpose of this project, participants were asked to rate how important it is for EFFECT OF COMMUNITY OUTREACH PROGRAMS 15 their child with a disability, as well as their family as a whole, to be involved and have community support while engaging in community activities. Identifying the importance of the childs participation within the community was needed in order to discover if levels of importance were associated with frequency of participation. Understanding the importance of support while participating in community environments will help to determine if community playgroups would be beneficial for the population who will be participating in the community outreach program. Limitations and barriers. Participants were also asked to identify barriers and limitations influencing their childs ability to effectively participate in community activities. Components of the environment may include supports or barriers that affect a childs participation (AOTA, 2014b; Fabrizi et al., 2016). Environmental barriers can have a negative impact on a childs participation within the community (Anaby et al., 2014; Umeda et al., 2017). Understanding barriers and limitations present within community environments allows for the opportunity to identify environmental modifications to enhance occupational performance (AOTA, 2014b; Lawson & Foster, 2016; Silverman & Tyszka, 2017). Desire and yearn for change. Parents and guardians of children with disabilities previously reported a desire for change due to the presence of environmental barriers inhibiting their childs community participation (Bedell et al., 2013). Participants were asked to report changes that could be made to improve community participation for their child with a disability and family as whole, and to identify community activities they would like their child with a disability to be able to participate in. Receiving information about the participants desire for change regarding their childs participation helps to identify and raise awareness about different EFFECT OF COMMUNITY OUTREACH PROGRAMS 16 components hindering their childs occupational performance in community environments. Data Analysis The survey questionnaire was administered via hard copy to all participants and was returned after completion. As a result, including mandatory response questions within the survey was not feasible due to the inability to inhibit a participant from not responding. Responses to all survey questions were completed anonymously. Some questions included within the survey questionnaire were open ended; therefore, the number of responses for some open ended questions surpassed the total number of participants who completed the survey. Open ended survey response questions were analyzed using inductive analysis to determine common themes and codes. Once themes and codes were established, all qualitative data from each of the 10 participants was coded regarding the identified themes. Outcomes of Needs Assessment Age and diagnosis. Various ages and diagnoses were reported concerning the child with a disability from participants who completed the survey questionnaire. The bulk of respondents reported their child as 3-years-old or below (50.0%, n = 5), or between 4-years-old and 7-yearsold (30.0%, n = 3) (Table 1). Diagnoses were also highly variable for this population, and some respondents chose not to inform of their childs diagnosis. As a result, no common themes were determined for community participation and activities related to specific ages or diagnoses. EFFECT OF COMMUNITY OUTREACH PROGRAMS 17 Table 1 Age of Participants (n = 10) Years in Age n % 3 or under 5 50.0% 4-7 3 30.0% 8-11 1 10.0% 12-15 1 10.0% Quantity and frequency. When asked if there are enough community resources for the child with a disability to participate in, majority of respondents (50.0%, n = 5) reported yes, while 30.0% (n = 3) reported no (Table 2). Of all the respondents, 50.0% (n = 5) reported their child with a disability rarely participates in community activities (Table 3). Specifically of the respondents (n = 5) who reported yes to there being enough community resources within the area, 40.0% (n = 2) stated their child with a disability rarely participates in community activities. Of the individuals (n = 5) who reported their child rarely participated in community activities, 80.0% (n = 4) stated their child participates in no community activities. In contrast to participants who reported their child rarely participates in community activities, six individuals (60.0%) reported their child participates weekly in community activities; however, 50.0% (n = 3) of these individuals stated the weekly activity consisted of attending a therapy session. Community participation regarding the family as a whole resulted in a slight increase of community participation. A total of 40.0% (n = 4) of the participants reported their family participates weekly in community activities, and only 40.0% (n = 4) reported their family rarely participates (Table 4). All three respondents who reported their family rarely participates in community activities also reported they participate in no community activities when asked what activities they participate in as a family. EFFECT OF COMMUNITY OUTREACH PROGRAMS 18 Table 2 Availability of Community Resources (n = 10) Sufficient Availability of Community Resources n % Yes 5 50.0% No 3 30.0% Unsure 2 20.0% Table 3 Frequency of Child Community Participation (n = 10) Frequency of Participation n % Daily 1 10.0% Weekly 4 40.0% Monthly 0 0.0% Rarely 5 50.0% Table 4 Frequency of Family Community Participation (n = 10) Frequency of Participation n % Daily 1 10.0% Weekly 4 40.0% Monthly 1 10.0% Rarely 4 40.0% Importance and confidence. Importance regarding their childs involvement with community participation was rated an 8 on average for all 10 respondents. Similarly, importance for community support for the child with a disability and family as a whole was rated 10 on EFFECT OF COMMUNITY OUTREACH PROGRAMS 19 average for all 10 respondents. However, confidence level felt while participating in community activities with their child with a disability was rated an average of 5 for all participants. Limitations and barriers. Common themes determined from responses regarding limitations and barriers to community participation include communication, child behaviors, accessibility, decreased support, and personal feelings. Individuals described a need for change and identified multiple areas where change would be beneficial for improving community participation. Common themes for these changes included environmental modifications, increased support, and more availability to age appropriate activities. One participant specifically wrote I would love for my child to be able to participate in all events and for people to understand why he gets frustrated. Another participant wrote I would love for my child to be able to participate in gymnastics and other sports with kids similar in age. Trends. Three trends were identified through analyzing survey results. Participants who responded their child rarely participates in community activities also reported decreased levels of confidence regarding participating in the community with their child with a disability. In contrast, participants who responded their child participates weekly or daily in community activities, reported higher levels of confidence related to engaging in community participation with their child with a disability. Another trend identified includes participants who reported their child rarely participates in community activities also rated importance of participation for both the child and family as a whole higher than those who participate more frequently. After reviewing the results of the needs assessment, it is evident there is a need for a community outreach program that aims to increase community participation for children with disabilities and their families that is designed and continuously tailored to meet the needs and wants of these individuals. Overall survey results indicate a need for improved community EFFECT OF COMMUNITY OUTREACH PROGRAMS 20 participation for children with disabilities and their family as a whole. Necessary improvements to increase quality and quantity of community participation include availability to community activities, environmental modifications, and more support for children with disabilities and their families during community participation. It is apparent that although 50.0% (n = 5) of participants reported they rarely participate within the community, community participation for their child is highly valued. Compare and Contrast Utilizing the PEO model as a guide to screen and evaluate clients can be applicable within a variety of occupational therapy settings. Regardless of the setting, the models focus on the interaction between the person, environment, and occupation remains consistent (Law et al., 1996). Within any setting, the model can be used as a guide to determine how characteristics and qualities of the person, environmental factors, and components of the occupation impact one another and affect overall occupational performance (Law et al., 1996). The screening and evaluation process of clients within a community and school setting has multiple similarities and differences. Within either setting, the client should be viewed as an individual with unique personal characteristics that impact his or her occupational performance (Law et al., 1996). While completing a needs assessment with children with disabilities and their families in a community setting, community participation was considered the childs occupation. Previous researchers reported children with disabilities experience decreased community participation (Bedell et al., 2013; Fabrizi et al., 2016). Results of the needs assessment aligned with findings from previous research, as the population assessed reported decreased levels of community participation as well. In contrast to community settings, school participation would be the occupation assessed during the screening and evaluation process in a school setting EFFECT OF COMMUNITY OUTREACH PROGRAMS 21 (AOTA, 2019a; AOTA, 2019b), and community participation would not qualify as an appropriate occupation to assess the childs performance. Environmental components would also differ depending on if the setting was a community or school environment. Within a community setting, environmental components impacting a childs ability to engage in the occupation of community participation was assessed during the screening and evaluation process. Similar to other parents of children with disabilities who reported a desire for change due to the presence of environmental barriers inhibiting community participation for their child (Bedell et al., 2013), parents, guardians, and caregivers who completed the needs assessment survey also described a need for change regarding community participation. Areas identified as a need for change included increased support, availability of age appropriate activities, and environmental modifications. Bedell et al., (2013) reported parents of children with disabilities also reported a need for change regarding availability and accessibility of age appropropriate community activities for children with disabilities. Increased support has been identified as an associated benefit of participating in a community playgroup (Bedell et al., 2013; Strange et al., 2014). Completing environmental modifications has also been reported as an effective way to increase community participation for children with disabilities (Lawson & Foster, 2016; Silverman & Tyszka, 2017). Screening and evaluation in a school setting must include considerations of how the environment influences a childs occupational performance; however, only activities and factors that impact the childs occupation of school participation can be addressed (AOTA, 2019b). School activities may take place in a variety of environments including the classroom, recess area, and cafeteria (AOTA, 2019c). Environmental factors present within each of these environments would be appropriate EFFECT OF COMMUNITY OUTREACH PROGRAMS 22 to assess during the screening and evaluation process in a school setting (AOTA, 2019b; AOTA, 2019c). Occupational therapists can provide services to support and encourage participation in both school (AOTA, 2019b; AOTA, 2019c) and community environments (AOTA, 2014b). An occupational therapist can use the PEO model as a guide to determine how environmental barriers limit the childs occupational performance within either setting. Occupational therapists can play a role in identifying present barriers and providing modifications to the environment that meet the individuals needs to enhance the childs overall occupational performance (AOTA, 2014b; Lawson & Foster, 2016; Silverman & Tyszka, 2017. Section IV: Program Implementation Implementation Phase The focus of the implementation phase was to develop three, four-week community outreach programs, and implement one of the programs to increase community participation of children with disabilities and their families. The program development process included organizing and planning a four-week schedule for each of the three community programs, identifying goals and objectives of each program, and recruiting participants and volunteers to participate in the program being implemented. Program implementation plans originally included group participation from participants recruited for the social playgroup; however, program implementation was unsuccessful. Information regarding unsuccessful implementation of the program is included in the implementation barriers section of this section. Community Outreach Program Development Organization and planning of three community playgroup programs occurred throughout the implementation phase. Three community playgroup programs were designed including a EFFECT OF COMMUNITY OUTREACH PROGRAMS 23 social, fine motor, and gross motor playgroup. Each community playgroup program was designed to include one session weekly, for four consecutive weeks. Specific details designed for weekly sessions of each community playgroup included location of the group sessions and activities for each session. Goals were created, and outcome tools were selected for each of the three groups to measure effectiveness of the community outreach program. Additionally, recruitment for the social community playgroup, which was planned to be implemented, involved identifying kids who were age appropriate, receiving therapy services from Reach Pediatric Therapy, and inviting them to participate in the community playgroup. Group leaders included a volunteer occupational therapy student, and a licensed and practicing occupational therapist. Additional volunteers for the program were also recruited through the occupational therapy program at Indiana State University (ISU). Social community playgroup. Two major components involved in the development of the social community playgroup consisted of selecting a location for the groups to occur, and recruiting individuals to participate in the program. Recruitment of participants occurred through Reach Pediatric Therapy, and volunteers were recruited through the occupational therapy program at ISU. While working to organize plans regarding where each weekly session would occur for the social playgroup sessions, various community locations within Terre Haute, Indiana were visited. Four locations were scheduled for four consecutive Tuesdays in March from four to five oclock in the evening. The first social community playgroup was scheduled to take place at the Vigo County Public Library. Following implementation of the first social playgroup at the Vigo County Public Library, the remaining three playgroup sessions were scheduled for The Bouncin Barn, Terre Haute Bowling Center, and Deming Park. Social community playgroup locations were selected through collaboration with the site mentor. EFFECT OF COMMUNITY OUTREACH PROGRAMS 24 Factors contributing to playgroup location selection were based on age-appropriateness of the activities present, associated costs, and recommendations from the site mentor reflecting past experiences. Recruitment. Recruitment of children and families to participate in the social community playgroup was completed through Reach Pediatric Therapy. All children invited to participate in the group were between the ages of 5-years-old and 7-years-old, and were receiving either speech, occupational, and/or physical therapy services at Reach Pediatric Therapy. Each child recruited to participate in the playgroup was identified by their therapist as functionally appropriate to engage in the activities planned with provided support. Each family was given a flyer (Appendix B), which included contact information, details about each playgroup session, and a brief description of opportunities associated with the playgroup. Families were informed of costs associated with two of the four playgroups. Parent and caregivers were asked to verbally confirm if their child would be attending the playgroup, in which six confirmations were received. Parents and caregivers were informed that follow-up text reminders would be sent prior to each weekly session. Additional recruitment for volunteers was completed through communication with occupational therapy staff and students at ISU. Reach Pediatric Therapy team partners with the occupational therapy program at ISU to provide opportunities for students to gain more hand-on experiences with clients throughout the program. As a result, the occupational therapy students at ISU were offered the opportunity to volunteer at the four weekly sessions of the social community playgroup to provide support as needed to the children and families. Four groups of four volunteers offered their time for each weekly playgroup session. Volunteers were also EFFECT OF COMMUNITY OUTREACH PROGRAMS 25 given a copy of the playgroup flyer, which included information about the social community playgroup program (see Appendix B). Session one. The set up of the Vigo County Public Library includes an open play area with several activities available, and an enclosed room with a variety of toys accessible to all guests. Utilization of the librarys space, activities, and toys is all free of charge to the public, so no cost was associated with the session. Plans for the session included initially meeting in a private room and having all participants and volunteers participate in an icebreaker game. The game involves having each individual introduce his or her self, and sharing something he or she likes to do for fun. Following completion of the ice breaker game, the children would be assigned a partner and would be directed to a station set up within the room. At least one volunteer would accompany each group at the station. Designed stations included a bowling area, board games, and team building activities. Each pair of participants would have the opportunity to spend ten minutes at each station, and would be instructed to switch partners before switching stations to ensure social interaction amongst all participants. For the remainder of the session, children would be allowed to explore and free play with one another within the open area of the public library, which includes a variety of activities such as a craft area, reading space, and a large play area with several toys. Volunteers would provide support to children as needed, and continuously facilitate social interaction between children. During the last five minutes of the social playgroup session, children and volunteers would meet back in the private room, and each share their favorite activity completed during the playgroup. Session two. Following the first weekly session at the Vigo County Public Library, the second session of the social community playgroup was scheduled to take place at The Bouncin Barn. The Bouncin Barn is an indoor inflatable center open to the public with an associated fee. EFFECT OF COMMUNITY OUTREACH PROGRAMS 26 After conversing with the owner about the purpose and focus of the community playgroup, a discounted fee of three dollars was offered to the children who would be participating in the playgroup. Session plans included having all children and volunteers first meet in a private room and participate in an ice breaker game to help individuals reconnect from last weeks session. Following completion of the ice breaker game, the children would be escorted to the back area of The Bouncin Barn, which includes three inflatables. Children would have the opportunity to play games and engage in this area for the first half of the session. Playgroup plans included expanding the playgroup area to the main space of The Bouncin Barn where there are additional inflatables, pending the children were doing well socially interacting with one another. If social interaction appeared challenging for the children, the second half of the session would remain in the back area where children remained in a smaller, confined area to promote social interaction. Volunteers during the session would be responsible for facilitating social interaction among the children and providing support as needed throughout the session. During the final five minutes of the playgroup session, children and volunteers would meet back in the private room and each share their favorite part of the playgroup before termination of the session. Session three. Session three of the social community playgroup was scheduled to occur at the Terre Haute Bowling Center. Terre Haute Bowling Center is open to the public with an associated fee, and has both a bowling area and playland area which includes a variety of inflatables. After communicating with the owner about the purpose and focus of the community playgroup, a discounted fee of three dollars was also offered to the children who would be participating in the playgroup session. Plans for the playgroup session included having children and volunteers initially meet in one of the party room areas to reconnect. All children would then be guided to the bowling area, where they would participate in a game of bowling with one EFFECT OF COMMUNITY OUTREACH PROGRAMS 27 another. Volunteers would be present to offer assistance and support as needed. Once the children had completed a game of bowling, they would be offered the opportunity to participate in a second game of bowling, or to play in the playland area. Volunteers would be present within the playland area to facilitate social interaction and ensure no child was playing independently. During the final five minutes of the session, playgroup participants would rejoin in the party room and share their favorite part of the session. Session four. The final session of the social community playgroup was scheduled to take place at Deming Park. Demining Park is a free, publicly accessible park, so no cost was associated with the planned session for participants. Session plans included initially meeting at the Oakley Playground entrance. Participants and volunteers would then be informed of session plans, which included a scavenger hunt within the park. Instructions for how to complete the scavenger hunt and rules of the hunt would be explained to all participants. The six participants would be split into two teams of three. Two student volunteers would be members of each team to provide supervision, support, and assistance as needed. Each team would receive their first clue simultaneously and then be released to start the hunt. Both teams would be given 45 minutes to complete as many items as possible. All participants would rejoin at the initial meeting area to share the clues they solved before termination of the session. Social playgroup goals and objectives. The primary focus of the social community playgroup was to provide children with disabilities and their families an opportunity to engage in fun, community based activities alongside families and peers of all abilities. Four specific social playgroup goals were created utilizing the Goal Attainment Scale (Appendix C), and were intended to be met by the end of the four week program. The goal was for all participants to scale each goal as the Expected Level of Outcome or higher by termination of the social EFFECT OF COMMUNITY OUTREACH PROGRAMS 28 playgroup (see Appendix C). Additional objectives were created to use as a guide throughout the program to ensure each child and family had the opportunity to engage in community activities with other individuals while also feeling supported as needed. The remainder of the social community playgroup objectives include the following: Allow children the opportunity to utilize and improve developmental play and social skills while participating in activities within a community environment with peers Increase access to community activities and parent/caregiver comfort level while participating by providing support to children and families experiencing barriers to community participation Provide families the opportunity to share success stories and concerns, ask questions, and engage in community activities and outings with other families Allow children and families the opportunity to experience utilization and transfer of social skills to community environments Implementation barriers. Various factors contributed to unsuccessful implementation of the social community playgroup. Parents and caregivers of children who were recruited to participate in the social community playgroup, and who initially confirmed participation in the group, reported a variety of barriers that contributed to being unable to attend the playgroup sessions. Illness, conflicting schedules, and direct and indirect costs were reported from parents and caregivers of participants as barriers to their child attending the playgroup. Prior to the first playgroup session, 66.7% (n = 4) of parents reported their child would be unable to attend the session when follow up text reminders were sent to the parents and caregivers of the participants about the session. Three of the four parents who reported their child would be unable to attend stated illness as the reason. Additionally, the remaining parent EFFECT OF COMMUNITY OUTREACH PROGRAMS 29 reported one of their other children had an extra-curricular event that conflicted with the playgroup time. As a result, the first playgroup session was cancelled due to only having two of the six children able to attend. Before the second scheduled playgroup session, text reminders were sent to parents and caregivers of the participants, and only the parents of two children confirmed their child would be attending. One parent who reported their child was unable to attend stated the family was experiencing decreased finances, would be unable to cover the associated fee for the session, and did not have the money required for transportation to the session. Another parent reported their child had a doctors appointment out of town, and would not be back in time to attend the session. Additionally, the parents and caregivers of two other children did not respond to the text reminder. Due to limited participants being able to attend the playgroup session once again, the second playgroup session was cancelled. After much discussion and thought between the two group leaders, it was decided to cancel the remaining two sessions of the social community playgroup program. Both group leaders agreed that timing for the playgroup did not appear to be an appropriate match for the participants and their families involved. Group leaders also did not feel comfortable pushing attendance for the group on participants and families who did not respond to text reminders for the group, or who had stated barriers to attendance as direct and indirect costs. Another timeline for implementation of the social community playgroup program during the summer is in the process of being scheduled by the occupational therapist and students from the occupational therapy program at ISU. Occupational therapy students from ISU will work to overcome barriers associated with unsuccessful implementation of the social community playgroup. While Reach Pediatric EFFECT OF COMMUNITY OUTREACH PROGRAMS 30 Therapy staff continues to work on growing the client caseload by advertising available therapy services to doctors and community personnel, and communicating with pediatric doctors to increase referrals, ISU students will take other approaches to reducing barriers of participation. Students will attempt to seek donations to cover the associated costs to some playgroup sessions. As a result, the financial barrier inhibiting children to attend the social community playgroup due to the associated cost of the session will be eliminated. Additionally, students will converse with parents and caregivers of potential participants to identify summer days and times to conduct the community playgroup that do not interfere with other family members schedules. The student volunteers will also discuss transportation barriers with families who may be unwilling to participate due to lack of transportation. Students will work to provide a solution to this barrier that is approved and supported by parents and caregivers of the participants. Fine motor community playgroup. Although the social community playgroup was the only community program that was intended to be implemented, plans for a fine motor group to be implemented in the future were also designed. Three locations were identified as future locations to host a four-week, fine motor community playgroup. These locations included the Vigo County Public Library, Terre Haute Childrens Museum, and Reach Pediatric Therapy, which would be utilized for two weekly sessions to decrease costs associated with the program. Future group leaders would be responsible for communicating with staff at the Terre Haute Childrens Museum to determine any associated costs with hosting the group at the location. Participants recruited for the fine motor playgroup would also be determined at a later time, depending on the children who are receiving services at Reach Pediatric Therapy at the time of implementation of the group. Fine motor skills are described as controlling and making movements utilizing the small muscles in the hands, wrists, and fingers (The Understood Team, EFFECT OF COMMUNITY OUTREACH PROGRAMS 31 2019a). The Terre Haute Childrens museum contains a variety of exhibits that include fine motor activities. The playgroup occuring at the museum would allow children to have free play exploration experiences while simultaneously having the opportunity to utilize and improve fine motor skills while engaging in present activities. Several fine motor activities were identified as potential activities that could be included in session plans at groups hosted at the Vigo County Public Library, and Reach Pediatric Therapy. Some fine motor activities identified include crafts, jewelry making with beads, sensory buckets, play dough, and painting activities. Session plans were left open to allow future group leaders the opportunity to decide which fine motor activities are appropriate based on age and skill level of the children participating. Goals and objectives. Similarly to the social community playgroup, the primary purpose of the fine motor community playgroup is to provide children with disabilities and their families an opportunity to engage in fun community based activities as a unit alongside families and peers of all abilities. Specific fine motor playgroup goals were created utilizing the Goal Attainment Scale (Appendix D), and will be intended to be met by the end of the four week program. The goal will be for all participants to scale each goal as the Expected Level of Outcome by termination of the fine motor playgroup (see Appendix D). Supplementary objectives were also developed to help guide experiences throughout the program to ensure all participants have the opportunity to participate in community activities within a supportive environment. Other objectives of the fine motor community playgroup include the following: Allow children the opportunity to utilize and improve developmental fine motor skills while participating in activities within a community environment Increase access to community activities and provide support to children and families experiencing barriers to community participation EFFECT OF COMMUNITY OUTREACH PROGRAMS 32 Provide families the opportunity to share success stories and concerns, ask questions, and engage in community activities and outings with other families Allow children the opportunity to experience utilization and transfer of fine motor skills during community activities Gross motor community playgroup. Along with the fine motor community playgroup, plans for a gross motor community playgroup to be implemented in the future were designed. Multiple community organizations and businesses within the Terre Haute, Indiana area provide environments that would be appropriate to host a gross motor playgroup. Such locations include the Terre Haute Bowling Center, The Bouncin Barn, Deming Park, McDonalds and Chick fil A playhouse, Martial Arts studio, Gymnastics studio, Bogeys Family Fun Center, and Reach Pediatric Therapy. Gross motor skills are considered ones ability to control and make movements using the large muscles of the arms, legs, and torso (The Understood Team, 2019b). Specific locations of the four-week group will be determined at a later time by future group leaders. Group leaders will need to communicate with the community organizations regarding accessibility and associated costs with utilizing the facility. Group leaders will also consider the age and skill level of the children participating. Future recruitments for participants of the gross motor playgroup would also be determined closer to the planned implementation date and would depend on the children who are receiving services at Reach Pediatric Therapy during the time of implementation. Goals and objectives. Providing children with disabilities and their families an opportunity to engage in fun community based activities as a unit alongside families and peers of all abilities is also the primary focus of the gross motor community playgroup. Gross motor playgroup goals were created utilizing the Goal Attainment Scale (Appendix E), and will be EFFECT OF COMMUNITY OUTREACH PROGRAMS 33 intended to be met by the end of the four week program. The overall goal of the playgroup will be for all participants to scale each goal as the Expected Level of Outcome by termination of the gross motor playgroup (see Appendix E). Subsequent objectives were also created to help guide the playgroup experience and ensure each participant has the opportunity to participate in community activities with support as needed. Additional objectives of the gross motor community playgroup include the following: Allow children the opportunity to utilize and improve developmental gross motor skills while participating in activities within a community environment Increase access to community activities and provide support to children and families experiencing barriers to community participation Provide families the opportunity to share success stories and concerns, ask questions, and engage in community activities and outings with other families Allow children the opportunity to experience utilization and transfer of gross motor skills during community activities Evaluation Strategies A variety of outcome tools were utilized and introduced to staff at Reach Pediatric Therapy clinic. Two specific tools, the Goal Attainment Scale and SWOT Analysis, were identified as evaluation tools that could be utilized to measure effectiveness of the community outreach program. The Goal Attainment Scale is an outcome tool that includes specific goals and allows evaluators to scale the extent to which each goal was met (Shirley Ryan Abilitylab, 2019). A Goal Attainment Scale was designed for each of the three community playgroups including the social (see Appendix C), fine motor (see Appendix D), and gross motor group (see Appendix E). The Goal Attainment Scale was planned to be administered to parents and EFFECT OF COMMUNITY OUTREACH PROGRAMS 34 caregivers of the participants at the end of the four-week social community playgroup, as well as at termination of the future fine motor and gross motor community playgroups. Additionally, the SWOT Analysis tool (Appendix F) allows an evaluator to identify strengths, weaknesses, opportunities, and threats of the program sessions (Dyson, 2004). Program plans included performing a SWOT Analysis after each weekly session of the social community playgroup. Completing a weekly SWOT Analysis would allow for group leaders to identify and build on strengths of the program, pinpoint and improve areas of weakness, find and utilize opportunities for growth, and identify and overcome potential threats of the playgroup (Dyson, 2004). Information included in the SWOT Analysis would then be utilized to alter and improve the weekly session before future implementation of the program occurred for a second time. The SWOT Analysis tool was also introduced to all staff at Reach Pediatric Therapy regardless of their job description. Utilization of the SWOT analysis could be beneficial for promoting staff development of all disciplines. The tool could be utilized to evaluate either personal or professional abilities and services. By utilizing the SWOT Analysis, staff members could complete their job responsibility of personal and professional growth. Leadership Skills Leadership skills were a crucial factor in planning, developing, organizing, and marketing the community outreach program. Communication, advocacy, and teamwork were all skills needed for successful development of the community outreach programs. While considering results of the needs assessment, leadership skills were utilize to design and market a social community playgroup for children with disabilities and their families. Results of the needs assessment indicated there was a need to increase community participation for children with EFFECT OF COMMUNITY OUTREACH PROGRAMS 35 disabilities and their families, including more accessibility to age appropriate activities and more supportive community environments. Communication and advocacy. Effective communication skills were necessary for a variety of tasks associated with developing the community outreach program. Conversations with staff of multiple community organizations and businesses occurred to provide information regarding results of the needs assessment, and to advocate for the profession of occupational therapy by explaining how occupational therapists can play a role in improving community participation for children with disabilities and their families, and how the community organization or business could contribute to the program. Effective communication skills utilized with individuals at these community locations contributed to their willingness to offer discounted admission rates and/or availability to use the locations space and resources for a weekly playgroup session. Communication skills were also utilized when conversing with volunteers for the program, and parents and caregivers of children being recruited to participate in the social community playgroup. Parents and caregivers were asked to provide feedback regarding the day and time of which would be most convenient for the playgroup to occur. Similarly, several conversations occurred with staff of the occupational therapy program at ISU to determine an appropriate time to schedule the playgroup that did not conflict with the student volunteers schedules. Parents, guardians, and caregivers of the children participating were also asked if small associated fees would be a barrier to their child participating in the community playgroup. Communication with all recruited participants and volunteers occurred in a professional and timely manner to ensure all individuals were informed about all details of the social community playgroup throughout the entire process of program development. EFFECT OF COMMUNITY OUTREACH PROGRAMS 36 Teamwork. Teamwork played a vital role in the process of developing the community outreach program for children with disabilities and their families. Office staff of Reach Pediatric Therapy assisted in distributing informational flyers to individuals participating in the community outreach program. The occupational therapist and site mentor at Reach Pediatric Therapy helped to introduce and connect to not only individuals being recruited to participate in the program, but also volunteers who could help provide support during the playgroup sessions. The supervising occupational therapist served as a mentor by providing feedback on playgroup session plans and activities. She also assisted with contacting participants and volunteers of the playgroup program as needed to ensure everyone received information about the playgroup in a timely manner. Section V: Discontinuation Program Sustainability To ensure sustainability of the community outreach program, partnerships have been formed between Reach Pediatric Therapy staff and students and staff involved in the occupational therapy program at ISU. Students from the occupational therapy program at ISU will utilize volunteering for the community outreach program as an opportunity to gain hands on experience with clients, while also assisting to meet the need of increasing community participation for children with disabilities. Occupational therapy students who will play a role in sustaining the program have been provided with a binder including program plans, goals, and outcome tools, which may be utilized in the future for program implementation and sustainability. Specific program plans and goals are included in the binder; however, may be altered if students and staff of Reach Pediatric Therapy feel a need to make changes in order to increase successfulness of the programs. If future students need to identify the need for EFFECT OF COMMUNITY OUTREACH PROGRAMS 37 maintaining the community outreach program, they will also have access to the needs assessment survey. The needs assessment survey could be distributed to clients receiving services at Reach Pediatric Therapy, or to other potential clients who may benefit from participation in the community outreach program to help further the growth of the program. A different strategy that will be utilized to ensure continuous sustainability and quality improvement of the community outreach program is a SWOT Analysis (Appendix F). As previously mentioned, the SWOT Analysis tool may be utilized to evaluate each individual program session, the overall program, and students and staff members involved in Reach Pediatric Therapy. Utilizing a SWOT Analysis to identify strengths, weaknesses, opportunities, and threats of individual sessions and the overall program would allow for individuals to continuously identify needed areas of improvement and associated barriers, ways to improve the quality of the program services, and future opportunities for growth of the program (Dyson, 2004). Another important component to ensuring sustainability and quality improvement of the community outreach program is making sure individuals involved in program design and implementation are continuously engaging in professional development opportunities. The SWOT Analysis can also be utilized by these individuals to assist with personal and professional growth. Personal and professional growth will allow individuals to apply new ideas and skills to various program components to increase quality of services. Societal Need The societal need met through the community outreach program includes providing children with disabilities an opportunity to increase engagement and participation in community activities and environments. The results of the needs assessment identified children with disabilities and their families experience decreased community engagement, and desire changes EFFECT OF COMMUNITY OUTREACH PROGRAMS 38 to increase community participation. As a result of the needs assessment, a community outreach program for children with disabilities was designed. The design of the community outreach program allows children with disabilities the opportunity to engage in various community activities and environments while also utilizing and improving social, fine motor, and/or gross motor skills. Each programs design includes age appropriate community activities for children with disabilities. Additionally, the presence of a licensed occupational therapist and occupational therapy student volunteers is included in each program sessions plans to provide support as needed to individuals and families participating. Although actual implementation of the community outreach programs was unsuccessful due to barriers impacting participation for the children and families, the community outreach program provides future opportunities for children with disabilities and their families to increase active participation within the community. Section VI: Overall Learning Communication Skills As previously mentioned, effective communication skills were a vital part of developing a community outreach program for children with disabilities and their families. In order to develop all components of the program, several conversations occurred with clients and their families, community business owners and staff, colleagues, and health providers. Communication with these individuals occurred through a variety of different methods including written, verbal, and nonverbal. Clients and families. Verbal and nonverbal communication were utilized when distributing the needs assessment survey to parents and caregivers of clients receiving services at Reach Pediatric Therapy. Parents and caregivers were educated on community participation, received an explanation of the purpose of a community outreach program, and were asked if they EFFECT OF COMMUNITY OUTREACH PROGRAMS 39 would be willing to participate in a needs assessment to help identify the need for a program to increase community participation. Parents, guardians, and caregivers who confirmed wanting to participate in the social community playgroup program were also communicated with via text to discuss possible days and times of which the program could occur to better accommodate their schedules. While listening to parents, guardians, and caregivers, appropriate nonverbal skills were utilized to ensure individuals speaking felt they were being heard, and did not feel judged or pressured. Written communication was utilized to create a community playgroup flyer to advertise and inform participants of the community playgroups meeting times and locations, purpose of the group, and contact information for Reach Pediatric Therapy staff. Written communication was also used via text to remind parents, guardians, and caregivers of program sessions time and locations. Community business owners and staff. Several conversations with owners and employees of community organizations and business occurred to explain the results of the needs assessment and advocate for the profession of occupational therapy. Verbal communication with these individuals also occurred to discuss how occupational therapists can play a role in improving community participation for children with disabilities and their families, and how the community organization or business could help to provide opportunities for these children and contribute to the community playgroup program. Multiple conversations via phone with these individuals took place to follow up and schedule community playgroup sessions at these locations including details and goals of the sessions. Respectful and professional verbal and nonverbal communication with owners and employees of community organizations and businesses helped to contribute to their willingness to participate in the community outreach EFFECT OF COMMUNITY OUTREACH PROGRAMS 40 program by offering discounted admission rates and availability to utilize facility space and resources for a community playgroup session. Colleagues. Multiple forms of communication were utilized with student colleagues and other health providers throughout the process of developing the community outreach program. Verbal communication with students in the occupational therapy program at ISU occurred to discuss the community outreach program details and goals, and to discover if students would be interested in volunteering for the community playgroup. Written communication via text was utilized with these individuals to gather information from the students regarding their class and work schedules to identify a day and time for the playgroup to occur that did not conflict with their schedules. The community playgroup flyer and goals for each group were shared with these individuals via email. After program implementation was unsuccessful, written communication was used to discuss future implementation of the community playgroup with the students serving as the co-leaders of the group with the licensed occupational therapist. Health providers. Multiple in-person conversations with the licensed occupational therapist took place to discuss needs of children with disabilities and their families receiving therapy services at Reach Pediatric Therapy, opportunities for community participation, and the purpose and goals of each program. Feedback through written communication was provided by Reach Pediatric Therapy staff members to offer suggestions and edits to community playgroup documents including session plans, playgroup flyer, and group goals. Written communication was also utilized to discuss the purpose and opportunities associated with completing a SWOT Analysis as a method of professional development. EFFECT OF COMMUNITY OUTREACH PROGRAMS 41 Leadership and Advocacy A variety of leadership and advocacy skills were enhanced throughout the process of developing a community outreach program for children with disabilities and their families. The licensed occupational therapist involved in the development and implementation of the program served as a mentor due to being focused on treating her caseload of clients, and occupied with tasks associated with being the director of Reach Pediatric Therapy. Due to working independently on project development and implementation components, learning to take initiative was extremely important. When the site mentor was unavailable, other staff members at Reach Pediatric Therapy were consulted, which resulted in the formation of connections with other health professionals. While connecting with other health professionals, advocacy skills were utilized to inform others of the profession of occupational therapy, and how occupational therapists can play a role in improving community participation for children with disabilities. Collaboration and teamwork amongst various individuals practicing in different disciplines also contributed to developing new opportunities for children with disabilities to increase community participation. Creating a new program and being unable to successfully implement the program as planned was extremely challenging. The staff at Reach Pediatric Therapy was very aware, understanding, and supportive of the challenges faced throughout the program development and implementation phase. Several hours of planning and hard work were put into developing the community outreach program and scheduling the implementation phase. Plans for the social community playgroup were in place, and six participants had confirmed their participation in the group; however, when it came time for the actual group sessions to occur the participants were unable to attend. The experience provided an important lesson that will be useful in future EFFECT OF COMMUNITY OUTREACH PROGRAMS 42 practice as an occupational therapist. Although the expected outcome may not always be achieved, there is always changes that can be made, time to keep working towards the goal, and people that will be willing to support and contribute to help provide opportunities for others in need. Occupational therapists must continue to advocate for clients, create opportunities for individuals while considering personal characteristics and qualities, and modify barriers of the environment or activity to promote maximized occupational performance. EFFECT OF COMMUNITY OUTREACH PROGRAMS 43 References American Occupational Therapy Association. (2019a). Learning through play. Retrieved from https://www.aota.org/aboutoccupationaltherapy/patientsclients/childrenandyouth/play.asp x American Occupational Therapy Association. (2019b). Occupational therapy in school settings. Retrieved from https://www.aota.org/About-OccupationalTherapy/Professionals/CY/school-settings.aspx American Occupational Therapy Association. (2019c). School-based practice. Retrieved from https://www.aota.org/Practice/Children-Youth/School-based.aspx American Occupational Therapy Association. (2014a). Occupational therapys commitment to nondiscrimination and inclusion. American Journal of Occupational Therapy, 68, S23S24. doi.org/10.5014/ajot.2014.686S05 American Occupational Therapy Association. (2014b). Occupational therapy practice framework: Domain and process (3rd edition). American Journal of Occupational Therapy, 68(Supp.1), S1-S48. Anaby, D., Law, M., Coster, W., Bedell, G., Khetani, M., Avery, L., Teplicky, R. (2014). The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Archives of Physical Medicine and Rehabilitation, 95, 908-917. doi:10.1016/j.apmr.2014.01.005 Bedell, G., Coster, W., Law, M., Liljenquist, K., Kao, Y. C., Teplicky, R., . . . Khetani, M. A. (2013). Community participation, supports, and barriers of school-age children with and without disabilities. Archives of Physical Medicine and Rehabilitation, 94(2), 315-323. doi: 10.1016/j.apmr.2012.09.024 EFFECT OF COMMUNITY OUTREACH PROGRAMS 44 Cahill, S. M., Clone, J., Wilson, M., Moroni, A. (2015). Friends, fun, and fitness: A 6 week program for adolescents with down syndrome. American Occupational Therapy Association: Developmental Disabilities Special Interest Section Quarterly, 38(2), 1-4. Dyson, R. G. (2004). Strategic development and SWOT analysis at the university of warwick. European Journal of Operational Research, 152, 631-640. doi:10.1016/S03772217(03)00062-6 Elenko, B., & Siegfried, E. (2018). Promoting inclusion: Information and strategies in early childhood. OT Practice, 23(5), 811. doi.org/10.7138/otp.2018.2305.f1 Fabrizi, S. E., Ito, M. A., & Winston, K. (2016). Effect of occupational therapyled playgroups in early intervention on child playfulness and caregiver responsiveness: A repeatedmeasures design. American Journal of Occupational Therapy, 70(2), 700220020p1700220020p9. doi:10.5014/ajot.2016.017012 Khetani, M., Graham, J. E., & Alvord, C. (2013). Community participation patterns among preschool-aged children who have received part c early intervention services. Child: Care, Health, and Development, 39, 490-499. doi.org/10.1111/cch.12045 Kraus, L., Lauer, E., Coleman, R., and Houtenville, A. (2018). 2017 Disability Statistics Annual Report. Durham, NH: University of New Hampshire. Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The personenvironment-occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63(1), 9-23. doi.org/10.1177/000841749606300103 Lawson, L. M., & Foster, L. (2016). Sensory patterns, obesity, and physical activity participation EFFECT OF COMMUNITY OUTREACH PROGRAMS 45 of children with autism spectrum disorder. American Journal of Occupational Therapy, 70(5), 7005180070p1-7005180070p8. doi:10.5014/ajot.2016.021535 McLean, K., Edwards, S., Evangelou, M., Skouteris, H., Harrison, L. J., Hemphill, S. A., . . . Lambert, P. (2015). Playgroups as sites for parental education. Journal of Early Childhood Research, 15(3), 227-237. doi.org/10.1177/1476718X15595753 Shirley Ryan Abilitylab. (2019). Goal attainment scale. Retrieved from https://www.sralab.org/rehabilitation-measures/goal-attainment-scale Silverman, F., & Tyszka, A. C. (2017). Supporting participation for children with sensory processing needs and their families: Community-based action research. American Journal of Occupational Therapy, 71(4), 7104100010p1-7104100010p9. doi:10.5014/ajot.2017.025544 Strange, C., Fisher, C., Howat, P., & Wood, L. (2014). Fostering supportive community connections through mothers groups and playgroups. Journal of Advanced Nursing, 7(12), 2835-2846. doi: 10.1111/jan.12435 The Understood Team. (2019a). Fine motor skills: What you need to know. Retrieved from https://www.understood.org/en/learning-attention-issues/child-learningdisabilities/movement-coordination-issues/all-about-fine-motor-skills The Understood Team. (2019b). Gross motor skills: What you need to know. Retrieved from https://www.understood.org/en/learning-attention-issues/child-learningdisabilities/movement-coordination-issues/all-about-gross-motor-skills Umeda, C. J., Fogelberg, D. J., Jirikowic, T., Pitonyak, J. S., Mroz, T. M., & Ideishi, R. I. (2017). Expanding the implementation of the americans with disabilities act for EFFECT OF COMMUNITY OUTREACH PROGRAMS populations with intellectual and developmental disabilities: The role of organizationlevel occupational therapy consultation. American Journal of Occupational Therapy, 71(4), 7104090010p1-7104090010p.6. doi:10.5014/ajot.2017.714001 World Health Organization. (2001). International classification of functioning, disability, and health (ICF). Geneva: Author. 46 EFFECT OF COMMUNITY OUTREACH PROGRAMS 47 Appendix A Survey Questionnaire to Address Community Participation Community participation includes any engagement in an activity outside of ones home that results in interaction within the community and can occur in a variety of locations with various individuals. (Family outings, playgroups, neighborhood, organizations, shopping, workplace, school, religious/spiritual, recreation, etc.) 1. Please list your childs age and limitations/diagnosis. 2. Do you feel Terre Haute has enough community resources for your child with a disability to participate in? Yes / No 3. On average, how often does your child participate in community activities? Daily, Weekly, Monthly, Rarely 4. What activities does your child with a disability currently participate in within the community? 5. On average, how often does your family participate in activities within the community? Daily, Weekly, Monthly, Rarely 6. What activities does your family as a whole currently participate in within the community? 7. Please rate how important it is for your child with a disability to be involved in community participation? 0 = Not Important 10 = Very Important 0 1 2 3 4 5 6 7 8 9 10 EFFECT OF COMMUNITY OUTREACH PROGRAMS 48 8. Please rate how important it is for your child with a disability and family to have community support while engaging in community activities? 0 = Not Important 10 = Very Important 0 1 2 3 4 5 6 7 8 9 10 9. Please rate how confident you feel participating in community activities with your child with a disability. 0 = Not Confident 10 = Very Confident 0 1 2 3 4 5 6 7 8 9 10 10. Please describe any barriers or concerns you feel limit or inhibit your child with a disability from engaging in community participation. 11. Please describe what changes could be made to increase or improve community participation for your child with a disability and family as a whole. 12. What would you love for your child with a disability to be able to participate in within the community? Please list any additional comments/concerns regarding community participation for your child and family. Thank you for your time and participation. EFFECT OF COMMUNITY OUTREACH PROGRAMS Appendix B Advertisement Flyer for Community Playgroup 49 EFFECT OF COMMUNITY OUTREACH PROGRAMS 50 Appendix C Social Playgroup Goal Attainment Scale Goal 1: Parent/caregiver Comfort Level Goal 2: Activity Participation Goal 3: Child Social Interaction Goal 4: Parent/caregiver Social Interaction Much Less Than Parent/caregiver Expected (-2) reports comfort level while participating in the community playgroup as 4/10 or less by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding opportunities for their child to engage in community activities and improve social skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Somewhat Less Parent/caregiver Than Expected (- reports comfort 1) level while participating in the community playgroup as 5/10 by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding opportunities for their child to engage in community activities and improve social skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 6/10 regarding Parent/caregiver reports satisfaction level as 6/10 regarding their childs Parent/caregiver reports satisfaction level as 6/10 regarding opportunities to Expected Level of Outcome (0) Parent/caregiver reports comfort level while participating in the community EFFECT OF COMMUNITY OUTREACH PROGRAMS 51 playgroup as 6/10 by termination of the four-week playgroup. opportunities for their child to engage in community activities and improve social skills by termination of the four-week playgroup. engagement with other children during the group by termination of the four-week playgroup. engage with other parents/caregivers by termination of the four-week playgroup. Somewhat More Parent/caregiver Than Expected reports comfort (+1) level while participating in the community playgroup as 7/10 by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding opportunities for their child to engage in community activities and improve social skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding opportunities for their child to engage in community activities and improve social skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Much More Than Expected (+2) Comments: Parent/caregiver reports comfort level while participating in the community playgroup as 8/10 or higher by termination of the four-week playgroup. EFFECT OF COMMUNITY OUTREACH PROGRAMS 52 Appendix D Fine Motor Playgroup Goal Attainment Scale Goal 1: Parent/caregiver Comfort Level Goal 2: Activity Completion Goal 3: Child Social Interaction Goal 4: Parent/caregiver Social Interaction Much Less Than Parent/caregiver Expected (-2) reports comfort level while participating in the community playgroup as 4/10 or less by termination of the four-week playgroup. Parent/caregive r reports satisfaction level as 4/10 or less regarding opportunities for their child to engage in community activities while improving fine motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Somewhat Less Parent/caregiver Than Expected (- reports comfort 1) level while participating in the community playgroup as 5/10 by termination of the four-week playgroup. Parent/caregive r reports satisfaction level as 5/10 regarding opportunities for their child to engage in community activities while improving fine motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Parent/caregive r reports satisfaction level as 6/10 regarding opportunities Parent/caregiver reports satisfaction level as 6/10 regarding their childs engagement with Parent/caregiver reports satisfaction level as 6/10 regarding opportunities to engage with other Expected Level of Outcome (0) Parent/caregiver reports comfort level while participating in the community playgroup as 6/10 EFFECT OF COMMUNITY OUTREACH PROGRAMS 53 by termination of the four-week playgroup. for their child to engage in community activities while improving fine motor skills by termination of the four-week playgroup. other children during the group by termination of the four-week playgroup. parents/caregivers by termination of the four-week playgroup. Somewhat More Parent/caregiver Than Expected reports comfort (+1) level while participating in the community playgroup as 7/10 by termination of the four-week playgroup. Parent/caregive r reports satisfaction level as 7/10 regarding opportunities for their child to engage in community activities while improving fine motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Parent/caregive r reports satisfaction level as 8/10 or higher regarding opportunities for their child to engage in community activities while improving fine motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Much More Than Expected (+2) Comments: Parent/caregiver reports comfort level while participating in the community playgroup as 8/10 or higher by termination of the four-week playgroup. EFFECT OF COMMUNITY OUTREACH PROGRAMS 54 Appendix E Gross Motor Playgroup Goal Attainment Scale Goal 1: Parent/caregiver Comfort Level Goal 2: Activity Completion Goal 3: Child Social Interaction Goal 4: Parent/caregiver Social Interaction Much Less Than Parent/caregiver Expected (-2) reports comfort level while participating in the community playgroup as 4/10 or less by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding opportunities for their child to engage in community activities while improving gross motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 4/10 or less regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Somewhat Less Parent/caregiver Than Expected (- reports comfort 1) level while participating in the community playgroup as 5/10 by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding opportunities for their child to engage in community activities while improving gross motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 5/10 regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 6/10 regarding opportunities Parent/caregiver reports satisfaction level as 6/10 regarding their childs Parent/caregiver reports satisfaction level as 6/10 regarding opportunities to engage with other Expected Level of Outcome (0) Parent/caregiver reports comfort level while participating in the community playgroup as 6/10 EFFECT OF COMMUNITY OUTREACH PROGRAMS 55 by termination of the four-week playgroup. for their child to engage in community activities while improving gross motor skills by termination of the four-week playgroup. engagement with other children during the group by termination of the four-week playgroup. parents/caregivers by termination of the four-week playgroup. Somewhat More Parent/caregiver Than Expected reports comfort (+1) level while participating in the community playgroup as 7/10 by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding opportunities for their child to engage in community activities while improving gross motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 7/10 regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding opportunities for their child to engage in community activities while improving gross motor skills by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding their childs engagement with other children during the group by termination of the four-week playgroup. Parent/caregiver reports satisfaction level as 8/10 or higher regarding opportunities to engage with other parents/caregivers by termination of the four-week playgroup. Much More Than Expected (+2) Comments: Parent/caregiver reports comfort level while participating in the community playgroup as 8/10 or higher by termination of the four-week playgroup. EFFECT OF COMMUNITY OUTREACH PROGRAMS Appendix F SWOT Analysis Evaluation Tool 56  ...

... Running head: CULTIVATING MINI MINDS: MARKETING THE BRAND Cultivating Mini Minds: Marketing the Brand Meghan L. Harkness April 29th, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Jennifer Fogo, PhD, OTR 1 CULTIVATING MINI MINDS: MARKETING THE BRAND A Capstone Project Entitled Cultivating Mini Minds: Marketing the Brand Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Meghan L. Harkness OTS Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date 2 CULTIVATING MINI MINDS: MARKETING THE BRAND 3 Abstract Mini Minds is a multi-disciplinary outpatient pediatric clinic with a focus on aiding families in achieving occupational well-being through their brain-based learning brand. External and internal analyses of Mini Minds revealed a need for increased marketing of organizational services in order to meet societal needs of the surrounding community. Opportunities to share and raise awareness for implementation of brain research through diverse marketing tools were created to improve occupational performance and role functioning of local families. The Customer-Based Brand Equity Model was ideal to guide the creation and dissemination of marketing tools as it emphasizes marketing toward the brand in order to gain customer loyalty. Content and appearance of electronic newsletters, business cards, and class & workshop flyers aligned with the organizations brand. Through implementation, class and workshop participation rates increased and the mailing list grew by 42%. Therefore, the selected marketing tools and strategies were likely effective at empowering clients and other community members with information on brain research. Keywords: brain-based learning, occupation, brand marketing CULTIVATING MINI MINDS: MARKETING THE BRAND 4 Marketing the Brand: Brain-Based Learning Mini Minds is an outpatient pediatric clinic that utilizes a whole brain, whole child, whole family approach when providing care (Mini Minds, 2019). To achieve this, they offer a variety of services including mental health therapy, speech therapy, feeding therapy, occupational therapy, nutrition counseling, art therapy, and yoga. The mission of Mini Minds is to empower families to raise children who thrive by providing them with the latest brain research for integration into the clients daily lives (Mini Minds, 2019). This Doctoral Capstone Experience (DCE) focused on gaining skills related to administration and advocacy at Mini Minds. This was primarily accomplished through diverse marketing efforts. Mini Minds owners are passionate about their brand and believe that all clinicians, materials, and programs should reflect the brand. Therefore, it is necessary to introduce and describe the brand, brain-based learning, prior to development of marketing tools to ensure that all components of this DCE communicate the brand. Literature Review This organization uses the theory of brain-based learning to effectively create a positive change in the behaviors and thoughts of their clients. Mini Minds was founded on this theory and markets it as the basis of their brand. Brain-based learning, also known as educational neuroscience, was designed by Geoffrey Caine and Renate Nummela Caine, California-based researchers, in 1990. This theory, with 12 general principles, supports combining the worlds of neuroscience and education to enhance the natural process of cognitive functioning (Glpnar, 2005). See Table 1 in Appendix A for a listing of these principles. The core of brain-based learning is to teach students about the structure and function of the brain in order to promote learning and growth (Aparna & Smita, 2014; Glpinar, 2005; Rodgers, 2015; Tileston, 2005; CULTIVATING MINI MINDS: MARKETING THE BRAND 5 Zadina, 2004). Through this approach, a learner can attain maximal attention, understanding, and memory (Jensen, 1996). The theory of brain-based learning has grown and been modified over the past three decades as scientific research on the brain has expanded (Rushton & Juola-Rushton, 2008). One example of brain-based learning is the idea of growth versus fixed mindset, which developed from neuroscience research on brain malleability. Dweck (2016) suggested that individuals can adopt a growth mindset, where intelligence, rather than being fixed, can be continuously developed, due to neuroplasticity. Sarrasin et al. (2018) found that teaching students about the brain and neuroplasticity could promote a growth mindset. Having a growth mindset, where an individual understands that the brain can change, can create positive outcomes such as improved motivation, increased achievement, and heightened brain activity (Sarrasin et al., 2018). Furthermore, Blair & Raver (2014) concluded that brain-based learning had positive effects on factors impacting learning such as executive functioning, reasoning ability, and attention. The use of this approach to learning also lead to a reduction in stress levels in students (Thomas & Swamy, 2014) and provided opportunities for individualized education (Duman, 2010). Stages of Brain-Based Learning Relaxed alertness. Brain-based learning incorporates three stages of learning, the first of which is relaxed alertness. Relaxed alertness develops from the students interests, purpose, and meanings so that learning becomes intrinsically motivating (McClintic, 2009, page xii). This stage should be challenging, yet safe, for the student (Glpinar, 2005, McClintic, 2009) so that they may learn in a comfortable social and emotional environment (Glpinar, 2005). Relaxed alertness also requires development of a supportive and empowering space in which students can CULTIVATING MINI MINDS: MARKETING THE BRAND learn (Glpinar, 2005). The goal of relaxed alertness is to remove fear in learners so that they feel competent and confident (McClintic, 2009; Thomas & Swamy, 2014). Stress plays a significant role in learning as the type and level of stress a student experiences can impact how they learn (Rodgers, 2015). If the leaner feels they are in a threatening environment, they can experience distress (negative stress) that limits attention (Degen, 2014). Long-lasting negative stress can result in chronically high cortisol levels which impairs the bodys processes and disrupts learning (Degen, 2014). A goal of relaxed alertness is to create eustress (positive stress) resulting in the release of cortisol, adrenaline, and norepinephrine. These chemicals, in appropriate amounts, can heighten perception and increase motivation for learning (Degen, 2014; Jensen, 2008). Orchestrated immersion in complex experience. The second stage of brain-based learning is orchestrated immersion in complex experience, which serves to create opportunities for learning through experience (Glpinar, 2005, McClintic, 2009; Rodgers, 2015). These experiences should be rich, complex, and realistic in nature (Glpinar, 2005, page 302). During this phase students engage in learning through their emotions and imagination during an experience (McClintic, 2009). The goal of orchestrated immersion in complex experience is to empower students to make meaningful connections (Glpinar, 2005) by fully immersing them in the educational experience (Thomas & Swamy, 2014, page 63). Active processing of experience. The final stage of brain-based learning is active processing of experience, during which students organize their learning (Glpinar, 2005). This phase encourages students to critically evaluate and reflect on the learning experience (McClintic, 2009). The goal of active processing of experience for students is to internalize 6 CULTIVATING MINI MINDS: MARKETING THE BRAND 7 information so that they may find applicability in the real world (McClintic, 2009; Thomas & Swamy, 2014). Relationship to Occupational Therapy While current research largely focuses on brain-based learning in school settings, the theory can be applied to any teaching environment, including occupational therapy sessions. Both brain-based learning and occupational therapy require a client-centered approach to learning and skill acquisition by teaching towards individual differences/learning styles and using diverse teaching strategies (Duman, 2010; Glpinar, 2005; Tileston, 2005; Zadina, 2004). Teaching children about their brain helps to empower them and learn to control their brain. Therefore, skills commonly addressed during pediatric occupational therapy intervention including mindfulness (related to attention), emotional regulation, and executive functioning, can be supported by brain-based learning (Tang, 2017). Finally, both brain-based learning and occupational therapy share the goal of self-efficacy where an individual cultivates a positive selfconcept and belief in their ability to achieve (McClintic, 2009) Screening & Evaluation Phase Needs Assessment The purpose of this phase was to identify processes the owners, employees, and/or clients of Mini Minds identified as lacking in order to improve business operations. The wants, needs, and interests, of the organization and its clients were explored through a combination of formal and informal approaches. To holistically examine Mini Minds, this needs assessment consisted of both and internal and external analyses. Completion of this analysis allowed for the gathering of qualitative data specific to the perceived problem and/or gap. CULTIVATING MINI MINDS: MARKETING THE BRAND 8 External analysis. Research was conducted on both the physical and online competitors of Mini Minds. This included businesses that focused on brain-based learning and those that offer yoga for children, as this is one of Mini Minds most popular brain-based classes. See Appendix B for all competitor profiles. Mini Minds has relatively few direct competitors but it has numerous indirect competitors. Completion of this market analysis identified Mini Minds brain-based curriculum, in combination with their geographical location, as unique. However, Mini Minds lacks services that meet the demands of a technology-driven world. Competitors can market their products/services so that clients may access them on-demand. Overall, it appears Mini Minds has developed a niche for their services despite other organizations having a competitive advantage related to electronic resources. A secondary method to analyze Mini Minds from an external perspective was completed by conducting informal interviews with the parents and caregivers of children who attend group classes and workshops at Mini Minds. Examples of questions asked in the interviews include: How could Mini Minds classes and workshops better fit the needs of your family?, What would you like to see Mini Minds offer that is not currently available?, and How likely are you to recommend Mini Minds to your friends and family?. The following themes emerged from these interviews: Parents and caregivers have inadequate knowledge on group classes and workshops currently available. Clients desire greater access to brain-based resources. Families have difficulty attending workshops and group classes due to their busy schedules. CULTIVATING MINI MINDS: MARKETING THE BRAND 9 Clients recognize the childs and parents growth and progress through participation at Mini Minds classes/workshop. As a result, they offer high praise and strong desire to recommend Mini Minds to others. Internal analysis. Information was gathered, through informal interviewing, from the co-owners and clinicians of the organization about their perceived needs and/or gaps in services. Prior to identifying areas for improvement clinicians were quick to speak highly of the positive assets of the organization including the ideal physical location of the clinic and the unique approach to therapy. Staff members described the following as the most significant organizational problems: Providers have difficulty filling spots for minimum number of participants for groups/classes/parent workshops. They are outgrowing current physical space as there are days and times where it is difficult to obtain private rooms for therapy. The owners need to hire more clinicians for individual therapy because clients currently have to wait many months prior to receiving services. The organization engages in dismal marketing efforts to promote how participation in brain-based learning is appropriate for neurodiverse clients. Results. A summary of the internal and external analyses is best illustrated through a strengths, weaknesses, opportunities, and threats (SWOT) analysis. Completion of an external analysis prior to the SWOT analysis helped to identify opportunities and threats while the internal analysis aided in describing the strengths and weakness of the organization. See Figure 1 in Appendix A for details of Mini Minds SWOT analysis. Mini Minds has many strengths, especially those related to its positive reputation in the Carmel community. Several of Mini CULTIVATING MINI MINDS: MARKETING THE BRAND 10 Minds weaknesses are associated with a lack of resources including space, staff, and time. The SWOT analysis helped to describe Mini Minds niche and further identify their brand. It also aided in recognizing organizational weaknesses and products/services that could potentially be opportunities. Two of the largest gaps identified were opportunities for Mini Minds to engage in increased marketing for their classes/workshops and develop online services/products available for purchase by clients. As a result of all analyses it was determined that Mini Minds would benefit from increased marketing of, and advocacy for, their brand through physical and web-based platforms. Doing so can potentially help to further develop the organizations competitive niche, increase participation in group classes/workshops, and improve peoples understanding of the positive effects of brain-based learning. Customer-Based Brand Equity The Customer-Based Brand Equity Model (CBBE), developed by Kevin Lane Keller, was the ideal model to guide marketing and advocacy efforts for this organization as it places an emphasis on marketing towards the brand in order to gain customer loyalty. A brand is defined as a name, term, sign, symbol, or design, or combination of them which is intended to identify the goods and services of one seller or group of sellers and to differentiate them from those of competitors" (Kotler 1991; p. 442). The CBBE model worked well for this DCE as it connects marketing strategies and brand equity (brand advocacy), two major components of the project. According to Keller, the CBBE model is an active process to mold the way clients/consumers feel about a service or product by analyzing factors that contribute to the strength of a brand (Keller, 1991). Brand loyalty, the overall goal of the model and marketing strategies, can be built by meeting, or ideally exceeding, client expectations with organizational CULTIVATING MINI MINDS: MARKETING THE BRAND 11 products and services (Keller, 2001). A customers attitude (thoughts, feelings, beliefs, opinions, and perceptions) about a brand and its products/service can be a powerful tool in marketing (Keller, 2001). If an organization has high brand equity it can result in customers doing the marketing work for the organization (Keller, 2001). CBBE model levels. The CBBE model has four levels towards creating brand equity. See Figure 2 in Appendix A. Level one, salience, requires analysis of the brand through the perspective of the customer (Keller, 1993). The organization must ask the question, who are you? in order to determine brand identity (Keller, 2001). At this level customers are able to recall and recognize a brand (Keller, 2001, p. 8). Level two includes two components, performance and imagery, and asks the question, what are you? (Keller, 2001). Performance refers to the ability of a product/service to meet clients needs while imagery refers to how these needs are met from a social and psychological standpoint (Keller, 2001). At this stage customers use word of mouth to convey what the brand means, and the organization uses targeted marketing to communicate what the brand stands for (Keller, 2001). The third level of the CBBE model also contains two components, judgement and feeling (Keller, 1993). Judgement is the opinion of the customer in terms of quality, credibility, consideration, and superiority (Keller, 2001). Feeling is the emotional status of the customer regarding the brand (Keller, 2001). The fourth, and final, level is brand resonance (Keller, 1993). It focuses on the customers relationship to the brand and includes behavioral loyalty, attitudinal attachment, sense of community, and active engagement (Keller, 2001) Compare and contrast to other areas. The value of brand equity in all industries is difficult to measure as it is a complex and multi-faceted concept (Christodoulides & Chernatony, 2010, p. 24). A literature review of CBBE by Christodoulides & Chernatony (2010) CULTIVATING MINI MINDS: MARKETING THE BRAND 12 shows that industry and company researchers have attempted to measure CBBE through a combination of direct and indirect approaches, but that there is no universal measurement of brand equity. Research exists on CBBE in various industries including tourism (Gartner, 2014), sportswear (Su & Tong, 2015), and telecommunications (Buzdar, Janjua, & Khurshid, 2016) but is relatively sparse and ambiguous in describing CBBE measurements. Some industries, such as airline (Chen & Tseng, 2010) and restaurant industries (Kim & Kim, 2004), have their own versions of the CBBE model and have found brand equity to be correlated to increased revisit intention (Pham, Do & Phung, 2016) and revenue gains (Kim & Kim, 2004). Overall, branding is essential for both product-based and service-based organizations in diverse industries (Christodoulides & Chernatony, 2010) Relationship to the organization. Completion of the needs analysis through both an internal and external perspective showed that Mini Minds currently has gaps in marketing related to brand performance and imagery, the second level of the CBBE model. One researched outcome of using the CBBE model is increased marketing productivity and more effective and efficient marketing programs (Keller, 1993; Keller, 2001, p.4). Therefore, the implementation phase of this DCE was directed by the CBBE model to produce meaningful and beneficial marketing tools that build brand (brain-based learning) and create loyalty. Implementation Phase Societal Need Mini Minds provides services to both children and parents. For children, services focus on development of skills such as emotional regulation, executive functioning, mindfulness, attention, and cognitive flexibility to help improve a childs overall participation and performance in numerous occupations. Services for parents aim to enhance role functioning as CULTIVATING MINI MINDS: MARKETING THE BRAND 13 they face the many challenges and difficulties that are accompanied with raising any child, regardless of ability level. Intervention implementation sought to increase child, parent, and family education on brain research in order to improve occupational well-being. The goal of implementation was to aid Mini Minds in creating opportunities and raising awareness for sharing brain research on a wider level. A DCE focus of administration and advocacy aligned with this goal. A large portion of the implementation phase consisted of developing a variety of marketing tools including e-newsletters, business cards, monthly calendars, class flyers, and workshop flyers. In addition, Mini Minds co-owners expressed a desire to transition parent workshops to an online platform which first required development of a survey to assess clients interests. Because this was an administrative task, it became a component of the DCE project. Finally, advocacy for the implementation and benefits of brainbased learning was achieved through presentations at community pediatric sites. Details & Descriptions Monthly calendars. Through a graphics application, Canva, monthly calendars were developed for four months (January, February, March, and April). Calendars included all events happening at Mini Minds for the given month as well as images to celebrate holidays. The calendars used the colors and logo associated with Mini Minds to help connect them to the brand. Calendars were both distributed through email and posted in the waiting room of the office so that clients may have a clear visual of all upcoming events. See Appendix C for all calendars. E-newsletters. Electronic newsletters were sent out once per month for three months (February, March, and April) through the application MailChimp. These were the first enewsletters that Mini Minds has ever sent to their subscribers. The e-newsletters varied in CULTIVATING MINI MINDS: MARKETING THE BRAND 14 content from month-to-month and were always accompanied by the previously mentioned monthly calendar and a Mini Minds Material section that shared current brain research with subscribers. The February newsletter focused on introducing the company and providers, describing new mental health services and classes, and sharing information from community advocacy outings. Marchs newsletter highlighted parent workshops and art therapy classes available for the month. The final newsletter, sent for the month of April, shared information about expanding occupational therapy services, parent workshops, feeding therapy, and the months nutrition and yoga classes. See Appendix D to view all e-newsletters. Business cards. As a part of the marketing strategy, four unique business cards were designed, created, and printed for Mini Minds. The business cards are a physical representation of the organization that can be given to clients and potential referral sources to help increase class and workshop participation rates. It was necessary that these cards reflect the brand through the colors, logo, and wording on the card. Information about brain-based learning was provided on the cards by including facts about the brain on one side of the business card and contact information on the opposite side. These brain facts included: The brain produces enough electricity to power a lightbulb (National Geographic Kids, 2018) Your brain sends messages at more than 150 miles per hour, thats two times faster than a cheetah can run (National Geographic Kids, 2018) Your brain sends more messages in a day than all the phones in the world (National Geographic Kids, 2018) There are as many neurons in the brain as there are stars in the Milky Way: about 100 billion (Safe Launch, 2013) CULTIVATING MINI MINDS: MARKETING THE BRAND 15 These business cards were created for the organization in general, rather than for individual therapists. The cards were both distributed to providers during a staff meeting and made available to clients at the front office. See Appendix E to view business cards. Flyers. Both class and workshop flyers incorporated the Mini Minds logo and associated colors to align with the brand. Eleven class flyers were created for parent-child classes, yoga & movement classes, and art therapy classes. Class flyers include infant massage, toddler parent support groups, preschool yoga, beginner yoga, intermediate yoga, screen detox art therapy, exceptional children & parents group, and parent support art therapy. See Appendix F to view all class flyers. An additional seven flyers were designed to market seven parent workshops. These flyers covered workshops including developing discipline, taming tantrums, recognizing & understanding sensory struggles, enhancing executive functioning, blooming brains, cultivating mindfulness, and picky eating. Finally, the flyers were posted at local sites (coffeeshops, schools, etc.) for continued advocacy. See Appendix G for all workshop flyers. Client survey. Mini Minds owners have been considering changing the parent workshops from in-person meetings to presentations accessed through an online portal. In addition, owners were curious if there were workshop topics that clients were interested in, that were not currently available. Prior to finalizing a decision on revamping workshops, it was necessary to ensure that clients would support this transition. A survey was developed through Survey Monkey and the link was provided in both the March e-newsletter and Mini Minds Facebook page. Unfortunately, relatively few individuals (11 in total) responded to this survey. However, those that responded provided valuable feedback. Many of the survey respondents were receptive to recorded videos but they had concerns about a lack of ability to ask questions CULTIVATING MINI MINDS: MARKETING THE BRAND 16 in person. Mini Minds owners found this information to be useful as they plan their next steps for changing the delivery format of parent workshops. See Appendix H for question distribution. Advocacy efforts. Communication with various community organizations involved advocating for implementation of brain-based research in order to enhance occupational performance and participation. This also contributed to advocacy efforts, which was a secondary focus of the DCE. Direct and verbal engagement occurred with two community organizations. One was an in-person lecture, given to a preschool co-op board, and the other was a Facebook Live interview with a local pediatric chiropractor. Both experiences were educational opportunities to share Mini Minds brand, services, and knowledge with the local community in a professional manner. In addition to formal advocacy efforts casual conversation with potential clients and referral sources occurred occasionally throughout the duration of the DCE. Staff Development Implementation of the interventions necessitated the involvement of staff members at all levels in order to be successful. Staff development was promoted by having both providers and administrators act as active contributors and collaborators on all DCE projects. Staff were frequently utilized as a resource for development of materials. Providers were often asked to share their expertise by verifying the content distributed through flyers and e-newsletters. For example, Jennifer Cloud, OTR, was consulted when writing about an upcoming parent workshop she was hosting in order to ensure that the workshop description accurately reflected the presentation. By encouraging maximum participation and contribution from staff, a positive company culture was created and effective implementation was possible. Discontinuation & Outcome Phase Outcomes CULTIVATING MINI MINDS: MARKETING THE BRAND 17 This project appeared to meet societys need for dissemination and application of brainbased learning to improve occupational participation and role functioning. A way to measure the relative success of intervention implementation was to evaluate the rate of return for Mini Minds. For the DCE project, this was measured in terms of the number of individuals that received information on brain research; through community lecture attendance, e-newsletter subscriptions, and class & workshop participation. Advocacy in the community. Community members who attended the advocacy presentations were active participants during both sessions. The audience was eager to ask questions and they were receptive to education on brain-based learning and its impact on daily functioning. Participants provided positive feedback on lectures with comments such as It is so empowering to know the reason behind our kids big feelings. Families in the community who attended these presentations accessed current brain research for implementation in their own home. E-newsletters subscriptions. The February e-newsletter was sent in the middle of January (the 18th) and was successfully delivered to 96.5% individuals on the mailing list (six emails bounced). Sixty-eight (40.7%) recipients opened the email which was 2.5% higher than the list average. One individual unsubscribed to the Mini Minds mailing list as a result of the newsletters distribution. Of the newsletters that were successfully delivered, 31 (18.6%) of the recipients clicked on at least one of the 12 included links. The most commonly clicked on links were those that lead the individual to an image of Mini Minds monthly calendar. The January newsletter was clicked on slightly more frequently than the February calendar. Towards the end of February, the 22nd, the March e-newsletter was distributed. It was successfully delivered to 98.9% of the individuals on the mailing list (two emails bounced). CULTIVATING MINI MINDS: MARKETING THE BRAND 18 Seventy-eight (44.6%) recipients opened the email which was 4.9% higher than the list average. Of the newsletters that were successfully delivered, 19 (10.9%) of the recipients clicked on at least one of the six included links. Once again, the most frequently clicked link was the one that lead the individual to an image of Mini Minds calendar for the month of March. The April newsletter was distributed just prior to the start on the month, on March 22nd, and was successfully delivered to 98% of subscribers (six emails bounced, two unsubscribed). One hundred and forty-six (49.5%) individuals opened the email which was 6.3% higher than the list average. Of the newsletters successfully delivered, 24 (8.1%) of the recipients clicked on at least one of the seven included links. The monthly calendar link was the most popularly clicked attachment. Calendar links in all e-newsletters were self-created to align with Mini Minds brand. Throughout this DCE the subscription list for the MailChimp e-newsletters has continuously grown. The subscription list originally started, on January 7th, with 173 individuals and has grown to 298 subscribers since February 9th. This means that the e-newsletter, which contains information on accessing services, and is embedded with a link to a brain-based learning article, was reaching 42% more individuals by the end of the doctoral capstone experience. Class participation & workshop attendance. It was not possible to determine an exact number of individuals who signed up for either group classes or parent workshops as there were often cancellations and no shows. Furthermore, headcounts were not taken at the beginning of each of the sessions. However, there is a singular email for the organization through which all individuals sign up for classes and workshops. In the two to three days following delivery of each e-newsletter, this email address received, on average, between 60-80% more inquires, for individual therapies, classes, and workshops, than a typical day. Therefore, it can be inferred that CULTIVATING MINI MINDS: MARKETING THE BRAND 19 the e-newsletters were likely effective at increasing class participation and workshop attendance so that brain research was shared on a wider level. Sustainability Steps were taken to ensure that the products and designs of this project are sustainable for the organization. Templates of all products were made accessible to the co-owners of Mini Minds. Flyer templates for both the parent workshops and group classes, as well as calendar templates, were shared with the co-owners through the creation of a joint Canva account. The template for the business card was shared through Vistaprint. Making the e-newsletter sustainable was one of the greatest endeavors. First, the template for the newsletter was saved to a Mini Minds specific account, which can save time for the individual who creates the enewsletter in the future. Also, plans for future e-newsletters, including Mini Mind Material article links and content ideas, were shared with the co-owners. Finally, instructions and a quick reference guide were developed so that an individual who continues to design these products in the future does not have to spend significant time learning the how-tos of Canva and MailChimp. Overall, to make the projects associated with this DCE sustainable, templates, guides, and instructions were provided to decrease the required amount of time to develop high quality products that align with Mini Minds brand. Overall Learning Leadership & Advocacy Strong leadership skills were necessary for effective implementation of intervention. One skill gained was that of commitment. This included applying feedback to improve the project(s), maintaining a strong work ethic, and persevering regardless of circumstances. Additionally, leadership skills related to contingency planning, adaptability, and patience helped to promote CULTIVATING MINI MINDS: MARKETING THE BRAND 20 successful implementation of both marketing efforts and advocacy appearances. However, the most well-developed, and frequently utilized, skill was communication. This DCE required comprehensive, timely, and succinct communication in both written and verbal formats. The aim of this project was to deliver accurate and brand-aligned information & products so that brain research could be shared with the local community. Communication during this experience primarily occurred with clients, families, and Mini Minds colleagues. Communication with clients & families. This aspect of communication was the most crucial during the DCE process. Nearly every project within this DCE required communication with clients and their families including the needs assessment external analysis, survey development, e-newsletter dissemination, and flyer distribution. The external analysis of Mini Minds through informal interviews with caregivers and families was the only direct communication shared. Most communication was indirect and written and largely consisted of providing education to clients and their families about brain-based learnings and its applicability to everyday life. Communication with colleagues. The ability to effectively and efficiently communicate with colleagues of all disciplines (mental health therapist, speech language pathologists, nutritionist, administrative assistant, etc.) facilitated the development of products that aligned with Mini Minds brand. This communication was largely oral or nonverbal in nature. The oral component required clarity of thoughts and ideas while the nonverbal component required professional body language, facial expressions, and eye gaze. The co-owners of Mini Minds, who were the greatest source of direct communication, played an invaluable role in the creation of marketing materials and strategies. In addition, individual providers were consulted on various topics within their area(s) of expertise to help create content included in the marketing CULTIVATING MINI MINDS: MARKETING THE BRAND 21 tools. Overall, using colleagues, through direct communication, as a resource for the administrative focus of this DCE strongly contributed to the success of the implemented marketing strategies. Professional growth. Communication was just one of the many leadership skills developed from this DCE. Working alongside one of the co-owners of Mini Minds provided opportunity for hands-on, personal experiences of what is required in order to lead an organization from an administrative viewpoint. The beginning of this DCE fostered development of skills required for company ownership, while the later portion of the DCE allowed for implementation of new-found leadership skills. For example, developing a successful marketing approach required participation in conversations and examination of documents regarding business strategy. As the DCE progressed, leadership skills of contingency planning, adaptability, and commitment, aided in establishing marketing plans within a business strategy. The leadership skills developed and utilized during this DCE have resulted in substantial professional growth. Advocacy skills. An increased ability to advocate for brain-based learning, pediatric services, and occupational therapy emerged from this experience. Prior to advocacy for brainbased learning, participation in evidence-based research was necessary to increase personal education and expertise on the topic. After completion of this research, increased confidence in this intervention strategy resulted in support for its application through communication with the local community and clients. A general theme of this DCE was advocacy for the procurement of services for clients and their families so that they may improve occupational well-being. The goal was to empower clients and their families through advocacy efforts. Finally, advocacy for the profession of occupational therapy was underlying all projects and products of this CULTIVATING MINI MINDS: MARKETING THE BRAND experience. Continuous education was provided to the community and clients to advance their knowledge about the role and scope of practice of occupational therapy. 22 CULTIVATING MINI MINDS: MARKETING THE BRAND 23 References Anderson, P. (2002). 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Retrieved from http://www.yogamattersindy.com/ Zadina, J. N. (2004). Brain research-based effectives strategies to enhance learning and energize instruction. In A presentation at the US Department of Education Office of English Language Acquisition Summit Conference. Zeman, J., Cassano, M., Perry-Parrish, C., & Stegall, S. (2006). Emotion regulation in children and adolescents. Journal of Developmental & Behavioral Pediatrics, 27(2), 155-168. CULTIVATING MINI MINDS: MARKETING THE BRAND Appendix A Table 1. Principles of Brain-Based Learning 1. All learning engages the entire physiology 2. The brain is social 3. The search for meaning is innate 4. Patterns and programs drive our understanding 5. Emotions are critical to patterning 6. The brain process parts and wholes simultaneously 7. Learning involves both focused attention and peripheral perception 8. Learning always involves conscious and unconscious processes 9. There are at least two approaches to memory (rote learning system, spatial/contextual/dynamic memory systems 10. Learning is developmental 11. Complex learning is enhanced by challenge and inhibited by threat associated with helplessness and fatigue 12. Each brain is uniquely organized Note: Adapted from Glpinar (2005) and Caine & Caine (1990) 28 CULTIVATING MINI MINDS: MARKETING THE BRAND Strengths 29 Weaknesses - Brain-based learning approach is unique and supported by current literature - Lack of time/resources/manpower to market all services with no marketing plan - Multidisciplinary practice able to treat clients with holistic perspective - Current physical space/facility is too small as providers struggle to find private rooms - Strong positive reputation in Carmel (north side of Indy) as pediatric brain experts - Difficulty marketing clinic as neurodiverse and appropriate for neurotypical children - Geographical location is ideal at popular intersection (Keystone Ave & Carmel Drive) and in close proximity to many clients - Need more providers to be able to keep up with demand so that services are delivered within an adequate time frame Opportunities Threats - Customers highly praise Mini Minds services and are quick to recommend the organization to other families - Online-based yoga organizations can provide services/programs on demand to meet needs of busy schedules - Ability to market to pediatric organizations (schools/preschools, daycares, etc.) through parent workshops - Insurance is constantly changing what they are willing to cover which may increase outof-pocket expenses for customers - Using an online platform to deliver parent workshops could increase passive revenue - Competitor prices are typically lower than Mini Mind's prices - Other healthcare professionals (nurse practitioner, music therapist) are reaching out to Mini Minds and wanting to provide their services - Other organization provide personalized programs (specifically yoga classes) Figure 1: Mini Minds SWOT analysis. CULTIVATING MINI MINDS: MARKETING THE BRAND Resonance RelationshipsWhat Are You and Me? Judgment ResponseWhat About You? Performance MeaningWhat Are You? Feelings ResponseWhat About You? Imagery MeaningWhat Are You? Salience IdentityWho Are You? Figure 2. Adapted from Strategic Brand Management: Building, Measuring, and Managing Brand Equity by Kevin Lane Keller. Copyright Pearson Education Limited 2013. 30 CULTIVATING MINI MINDS: MARKETING THE BRAND 31 Appendix B Simply Yoga 260 South 1st Street Zionsville, Indiana Description: This organization offers yoga services at two studios, but their primary location is in Zionsville. The operate with the mission Balanced Mind. Balanced Body. They have 14 instructors that teach eight different yoga courses. Occasionally they will offer pose-specific workshops (Sun Salutations, Headstands, etc.) and trainings (such as Adventures of Super Stretch Kids Yoga Teacher Training). Program Overview: (1) Kids Yoga Details: This class is aimed at building confidence, body awareness, and breathing techniques. It utilizes stories, partner dynamics, animal sounds, and laughter to accomplish these goals. Schedule & Ages: Childrens classes are not currently on the organizations schedule; children ages 5-9 Pricing: Single class $10 (2) Teen Yoga Details: This classes seeks to decrease stress, increase physical fitness, and enhance body awareness. Schedule & Ages: Sundays 6:00-7:15pm; teens between the ages of 12 and 18 Pricing: Single class $10 (3) Prenatal Yoga Details: This class focuses on balance strength, and confidence during pregnancy. Schedule & Ages: Sundays 1:30-2:45pm; any expecting mother Pricing: Single class $17; set of 5 classes- $75; set of 10 classes $135; set of 20 classes $260 (4) Childrens Yoga-Themed Birthday Parties Details: Simply Yoga offers private birthday parties. The Mini Minds Difference: (+) Mini Minds offers classes to children of all ages instead of only a specific age group. (+) Mini Minds offers week night classes and once a month weekend classes to better accommodate busy family schedules. (-) Mini Minds classes average approximately $16 dollars per class. CULTIVATING MINI MINDS: MARKETING THE BRAND 32 Silly Hearts Yoga Mobile Studio based in Carmel, Indiana Description: Yoga-based organization that provides services for children ages 18 months to 18 years. Instead of having a physical location the owner of the organization travels to schools, daycares, birthday parties, and community events to provide services. Some of the frequent sites where the owner provides classes include Carmel Cooperative Preschool, Midwest academy, Congregation Shaarey Tefilla, Zionsville Community Schools, and the Orchard School. Classes include books, games, songs, breathing techniques, and mindfulness. Program Overview: (1) Little Yogis Class Schedule & Ages: Wednesdays 5:00-5:45; 4-7 years old Pricing: $120/session; $14/single class (2) Itty Bitty Yogis Schedule & Ages: Thursdays at 11:30; toddler and preschool age Pricing: $15/session (3) Family Yoga Schedule & Ages: Fourth Fridays 6:00-8:00; all ages but recommended ages 3-10 years old Pricing: $30/parent-child; $6/additional child (4) Hamilton East Public Library Schedule & Ages: age not specified; one day per month 4:30-5:00 Pricing: free (5) PJ Library Schedule & Ages: One Sunday per month 10:30-11:30; Jewish families with children under 2 years old Pricing: free (6) Yoga Play Dates and Parties: A one-hour yoga class or party (any theme birthday child wants) starting at $95-$200 (up to 10 children; $10 per additional child). Option to add a 30-minutes themed craft for an addition $75. The Mini Minds Difference: (+) Mini Minds has a physical location to provide programs and services which can cut down on costs to clients. (+) Mini Minds offers classes more frequently than this organization does. (-) Mini Minds does not offer off-site yoga classes or personalized classes (play dates and birthday parties. CULTIVATING MINI MINDS: MARKETING THE BRAND 33 Yoga Matters Indy 7755 Wawasee Drive Indianapolis, Indiana Description: Mother and child-based yoga organization aimed at helping ease the transition to motherhood. At Yoga Matters Indy the owner is the sole employee of the organization. She offers birth works classes, mommy and me classes, and prenatal yoga. This organization also offers vinyasa classes for adults and has a blog with posts approximately three times per year. Program Overview: (1) Birth Works Classes Details: An 8-week session class with topics including nutrition, epidurals, drugs, interventions, and finding comfort. Each session includes instruction on massage and movement during labor and education on the birth process. Price: $15 single session; $78 for 6 sessions (2) Mommy and Me Details: Classes with the goal of improving core and upper body strength in addition to toning the lower body. These classes use the infant for weight and resistance in a manner that is fun for the child. The moms of the group are also instructed on infant massage. Price: $15 single session; $78 for 6 sessions (3) Prenatal Yoga Details: These classes, for pregnant women in any trimester, focus on breath and movement synchronization to help strength the body prior to labor and birth. Participation includes improving balance postures, relaxing, and use of creative visualization. Price: $15 single session; $78 for 6 sessions The Mini Minds Difference: (+) Mini Minds has multiple (4) providers that are trained at teaching childrens yoga classes instead of sole employee (+) Mini Minds classes are designed with the child as the primary focus instead of the parent(s) (-) Mini Minds does not offer joint parent and children classes that involve both generations CULTIVATING MINI MINDS: MARKETING THE BRAND 34 Flourish Yoga & Wellbeing 10138 Brooks School Road Fishers, Indiana Description: This organization largely markets to those who are 13 years or older. They frequently organize special offerings and workshops including Intro to Yoga and Yoga Teacher training. Overall, they employee 15 yoga teachers. Each with unique specialties and certifications. Program Overview: (1) Prenatal Yoga Details: These classes focus on flowing poses, strength building, breath work, and body restoration. The classes are marketed to pregnant women at any trimester and postpartum women. Schedule: Classes are held 7:15-8:15 on Monday evenings. Price: $18 for one session; $65 for four sessions; $115 for eight sessions (2) Teen Glow Yoga Details: Classes take place under black lights. Schedule & Ages: Classes are held Mondays from 4:00-5:00; Teens ages 13 and older Price: $10 per session The Mini Minds Difference: (+) Mini Minds offers yoga classes for children to fill the age gap where this organization lacks classes (+) Mini Minds uses brain-based curriculum in yoga classes instead of providing general yoga poses and techniques. (-) Mini Minds does not offer classes as frequently as Flourish Yoga & Wellbeing which may make scheduling more difficult for clients. CULTIVATING MINI MINDS: MARKETING THE BRAND 35 Body Mind and Core 1344 S Rangeline Road Carmel, Indiana Description: This organization offers a variety of services including yoga, Pilates, dance, and suspension programs. Body Mind and Core is located in a 4000 square foot facility with 3 studio rooms and 15 teachers. Program Overview: (1) Prenatal Yoga Details: This classes focuses on strengthening the body and opening the hips while participating in breathing techniques. Any woman is welcome to join this class as they accept those who are prenatal, postnatal, or participating in fertility treatments. Schedule: Wednesdays from 6:00-7:00pm; Saturdays 9:30-10:30am Pricing: $23 single session; 10 sessions for $165 (2) Kids Yoga Details: This class is advertised as a sensory experience including aspects such as songs, dancing, art, storytelling, uplifting music, creative movement, breathing exercises, visualizations, and affirmations. Schedule & Ages: Mondays from 4:30-5:45pm; children 4-10 years old Pricing: $23 single session; 10 sessions for $165 The Mini Minds Difference: (+) Mini minds offers varying levels of yoga classes for children (preschool, beginner, intermediate, and advanced) (+) Mini Minds offers services at a lower rate than this organization (Mini Minds average is ~$16) (-) This organization seems to be the most similar yoga studio to Mini Minds and they both market to the same population/clients/geographic location (Carmel, Indiana). However, Mini Minds lacks prenatal yoga class and only provides services for children after birth. CULTIVATING MINI MINDS: MARKETING THE BRAND 36 Carmel Clay Parks & Recreation 1235 Central Park Drive East Carmel, Indiana Description: This community organization is responsible for 500+ park acres and many recreation facilities. They strive to meet the nature and fitness needs of the local community and increase overall quality of life. There is a current emphasis on creating parks and facilities that are accessible for all. Program Overview: (1) Little Yogis Details: Yoga class designed for children with disabilities. Focus on learning yoga poses, breathing techniques, posture, and balance. Schedule & Ages: Wednesdays March 6th-27th from 5:30-6:00pm; children 2-5 years old Pricing: $26 (2) Youth Yogis Details: Yoga class designed for children with disabilities. Focus on learning yoga poses and relaxation techniques through stories, imaginative play, and movement. Schedule & Ages: Wednesdays March 6th-May 1st from 6:15-6:45; children 6-12 years old Pricing: $38 (3) Teen Yoga Details: Adaptive introductory yoga class. Focus on increasing strength, balance, flexibility, and coordination. Schedule & Ages: Wednesdays January 9th-February 27th 6:00-6:45; teens ages 15 and over Pricing: $49 The Mini Minds Difference: (+) Mini Minds classes are longer in both duration and frequency so that children have an adequate amount of time to learn the curriculum. (+) Mini Minds teaches children about their brain during the yoga classes instead of providing traditional yoga curriculum. (-) Mini Minds does not offer adaptive yoga classes specifically designed for children with disabilities. However, the curriculum allows for participation for children of all abilities. CULTIVATING MINI MINDS: MARKETING THE BRAND 37 The Dailey Method 725 E 65th Street Indianapolis, Indiana Description: This organization prides itself on its use of hand-on training and education to improve awareness and optimize alignment. They work with clients to using a holistic approach involving the body, mind, motivation, and attitude. This is an international organization with 50 studios in 4 different countries. They also offer an online option for classes (for an additional fee) where you can access yoga videos on demand. Program Overview: (1) Kids LOVE Yoga Details: Children use their breath and body movements in silly ways to build strength Schedule & Ages: One Sunday per month 11:30am-12:30pm; ages not specified Pricing: single class $20; 10 class package $160; 30 class package $420 The Mini Minds Difference: (+) Mini Minds offers classes at a lower rate per session than this organization. (+) Mini Minds offers classes more frequently and during the week which can help to accommodate family schedules. (-) Mini Minds location is further north (not as centrally located within Indianapolis) which may deter families that dont live on the north side from attending the classes. CULTIVATING MINI MINDS: MARKETING THE BRAND 38 Shine Yoga & Wellness 833 Conner Street Noblesville, Indiana Description: This organization offers diverse classes including strength/flexibility classes, advanced classes, and restorative classes. Yoga is not their only service as they also provide nutrition consulting, wellness coaching, and workplace wellness. Program Overview: (1) Shine Kids Yoga Details: Focus is on increasing mindfulness, flexibility, focus and strength. Schedule & Ages: kids classes not currently available on their schedule; children ages 5-10 Pricing: $10 per class (2) Holiday Themed Kids Yoga Details: This class highlights making yoga fun for children. Schedule & Ages: Saturdays of holiday weeks 11:00am-12:00pm Pricing: $10 per class (3) Yoga for Teens: Cultivating Your Shine Details: Use yoga to decrease stress and promote relaxation. Focus on breath work, yoga flows, and guided meditations. These classes have a new topic/theme each week. Schedule & Ages: Wednesdays 4:30-5:30pm; for pre-teens and teens Pricing: $10 per class The Mini Minds Difference: (+) Mini Minds consistently offers yoga classes (8-week sessions) that are always on the calendar. However, in order to run the sessions Mini Minds requires a minimum of 3-4 children to sign up. (+) Mini Minds primary focus is on teaching children about their brain during yoga sessions while strength and flexibility are secondary benefits. (-) Mini Minds does not offer classes that are advanced enough for teen yoga as the most advanced class is generally for kids ages 10-13. CULTIVATING MINI MINDS: MARKETING THE BRAND 39 Cosmic Kids Yoga Online Platform, YouTube channel & App Description: This organization, established in 2012, provides a multitude of yoga resources that are specifically designed for children. They market the organization as healthy screen time for kids and claims participation in services can improve self-regulation, focus, and empathy. Cosmic Kids Yoga offers programs through a variety of mediums and also provides certification courses to become a kids yoga teacher. They encourage school teachers to use their materials in the classroom. Yoga classes are typically character-based included characters such as Lulu the Lion, Dodgson the Dodo, Spartz-24 RoboDog, Tommy the Bedtime Turtle, Mike the Cosmic Space Monkey, Frank the Frog, and many more. Programs: (1) YouTube Videos Details: Hundreds of videos sorted by length (under 10 minutes, under 15 minutes, and over 15 minutes), energy level (calm, focus, and active), and category (mindfulness, yoga, relaxation, and dance). These videos do include commercials. Pricing: Free (2) App Details: Commercial-free option for accessing and viewing yoga videos. Pricing: $65/year or $10/month (3) Lesson Plans & Guided Relaxations Details: Consumers can purchase yoga class plans that typically include information for 5 or 11 yoga sessions. These lesson plans can be general, purchased based off age, or based off topic (games compendium, childrens books, childrens movies, fairytales, etc.). There Pricing: Prices range from $5-$25 (4) Blog Posts Details: Posts with ideas and advice for parents. Pricing: Free The Mini Minds Difference: (+) Mini Minds use curriculum based on the brain instead of curriculum based on characters (+) Mini Minds classes are longer in duration which can help to solidify concepts learned. (-) Mini Minds does not offer any online learning opportunities as all services take place within the clinic. This may result in them missing a large portion of the target population. (-) Mini Minds does not have unlimited ability to access classes. Children only take one yoga class per week. With this organization clients can receive unlimited yoga classes. CULTIVATING MINI MINDS: MARKETING THE BRAND 40 Gaia Online Platform Description: This organization labels itself as a conscious media network that focuses on yoga, meditations, and spiritual growth. The website offers over 8000 videos and posts new videos each week with an ad-free experience. Videos can be accessed through mobile devices including iPhone, iPad, iPad Mini, iPad Pro, and Android. They can also be accessed through media devices including Roku, Apple TV, Amazon Fire TV, and Android TV. Services are offered in a 3-month plan ($11.99/month), weekly plan ($11.99/month), and annual plan ($99/year). Programs: (1) Yoga Classes Details: Class options are sorted by essential style (slow flow, vinyasa, meditation, and hatha), teacher, and morning ritual (energize, awaken gentle, and choose positivity). There are approximately 30 yoga videos dedicated to children and designed for children ages 3 through 12. The childrens videos range in length from approximately 10-20 minutes and include various themes such as space, dinosaurs, fitness, etc. (2) Series Details: Videos of interviews with spiritual teachers and innovators. Videos vary by both guests and topics. (3) Documentaries Details: Videos with various topics (science, nature, literature, emotions, world religions, etc.) related to the organizations mission. (4) Films Details: Hundreds of videos including 60+ topics. (5) Blog Details: Links to current articles (scholarly and non-scholarly) as additional resources The Mini Minds Difference: (+) Mini Minds is specialized in helping children and bring expertise with ages 3-13 (+) Yoga at Mini Minds is focused on teaching children about their brain through yoga while still incorporating themes (-) Mini Minds yoga classes are not accessible on-demand and are more costly than the classes provided from this company. CULTIVATING MINI MINDS: MARKETING THE BRAND 41 Next Generation Yoga Online Platform & Physical Facilities in Select States and International Locations Description: This organization, developed in 1998, provides yoga programs for all populations. They use a whole bodies, independent mind, and intuitive senses approach. A majority of their products and services are marketed to adults and a small subset is marketed to children. They provide many resources for their clients and consumers including articles about the benefits of yoga for kids. Programs: (1) Yoga Videos on Demand Details: Kids yoga videos have varying themes and include yoga poses, breathing exercises, and relaxation techniques. The kids learn about yoga through music, crafts, books, props, and sensory experiences. Videos are free and average about 12 minutes in length and are geared towards children between the ages of 2 and 7. There are only 10 kids yoga videos available. (2) Yoga DVDs Details: There are 3 DVDs available with the themes of dinosaurs, outer space and beaches. The DVDs provide approximately one-hour worth of material. Pricing: $15 per DVD (3) Lesson Plans Details: There are over 130 lesson plans available for purchase. Lesson plans are organized by ages, those for children ages 2-7 and those for children ages 8-13. Plans include yoga flows, pose pages, and advice for connecting with the children. Pricing: $18 per lesson plan (4) Lesson Plan Club Details: This organization provides monthly lesson plans with annual memberships. By signing up for this club member receive monthly emails with instructions. Pricing: plans for children ages 2-7 ($144.95); plans for children age 8-13 ($144.95); plans for both 2-7 year olds and 8-13 year olds ($237.95) The Mini Minds Difference: (+) Mini Minds yoga programs are specific for children age 3-13 so they have greater expertise and skills in working with this population (+) Mini Minds provides parent worksheets and kids activities for children to take at the end of classes. This provides encourages carry over and can promote greater learning. (-) Mini Minds does not offer services both at a physical facility and through an online platform as this company does. This may limit Mini Minds ability to reach/provide programming for more children. CULTIVATING MINI MINDS: MARKETING THE BRAND 42 Big Life Journal Online Platform Description: This organization focuses on helping kids to develop a growth mindset through journals, printable kits, and activities. They are driven by the goal to help kids be confident, resilient, and positive human beings. Products are marketed toward children 4 years of age and older. Big Life Journal offers a number of free resources including sample lesson plans, guides to teaching growth mindset, and weekly email printables to those on their mailing list. Programs: (1) Journals Details: Designed for two different age groups (ages 7-10, and ages 11+) with new topics each week (26 weeks) on socio-emotional learning and growth mindset. Journal pages include stories, illustrations, and guided activities. Pricing: $24.95 per journal (physical or e-book form) (2) Printable Kits Details: Kits are organized by age group (4 to 10-year olds and 11+ year olds) and have different themes such as self-esteem, goal setting, and growth mindset. There are 9 kits in total. Kits include worksheet and activities for children as well as guides for parents and teachers. Pricing: $10.95 per kit (3) Teaching Guides Details: There are two teaching guides offered. One for children ages 7-10 and one for children who are over 11 years old. Teaching guides include 13 lesson plans as well as numerous worksheets and activities. These guides can be used on a one-onone situation with a child or in a small group setting. Pricing: $19.95 per guide (4) Blog Details: Provides links to articles as resources for parents with tips and tricks for navigating tricky parenting moments and promoting growth mindset in children Pricing: Free The Mini Minds Difference: (+) Mini Minds uses providers who have expertise in brain-based learning who interact with children/parents/families face-to-face instead of relying on worksheets & printables (+) Mini Minds incorporates movement into their curriculum which helps to engage kids so that they are more actively involved in their learning. (-) Mini Minds does not offer any free resources to parents as a preview of services/programs provided. CULTIVATING MINI MINDS: MARKETING THE BRAND 43 Blissful Kids Online Platform Description: This is a mindfulness-based organization with an online presence only. Blissful Kids encourages children to destress, gain emotional regulation, increase awareness, and improve attention through relaxation and meditation. Programs: (1) Book Details: Book with 150+ mindfulness activities that is geared toward parents and children completing exercises together. Pricing: $9.99 (2) Activities Details: Website provides free articles that explain mindfulness, its benefits, playbased activity ideas that encourage mindfulness. These activities are often linked to brain-based learning. Activities include topics such as gratitude jar, take five exercise, the ultimate mindfulness bracelet, and many more. Pricing: Free (3) Courses Details: There are 4 courses offered. Two of them are designed for children (positive mindfulness for kids and teens and mindfulness with kids and youth 101), and two of them are designed for adults (mindfulness 101, and positivity for parents). Pricing: some courses are free but premium courses have a fee associated The Mini Minds Difference: (+) Mini Minds offers services that extended beyond mindfulness and include all components of brain-based learning. (+) Mini Minds uses a multi-disciplinary approach to teaching kids about their brain which helps to treat clients holistically. (-) Mini Minds does not have any printed resources (books, worksheets, courses, etc) to offer clients. CULTIVATING MINI MINDS: MARKETING THE BRAND 44 Mindset Kit Online Platform Description: An organization who provides resources for adults to help teach children about growth mindset. Resources are designed for various groups including educators, parents, and mentors. This website was created by The Project for Education Research that Scales (PERTS) at Stanford University. Resources are backed by research and focus on three learning mindsets: growth mindset, belonging mindset, and purpose & relevance. All resources provided on this website are free of charge. Programs: (1) Growth Mindset for Teachers Details: This program offers 7 online courses relating to growth and belonging mindsets. Courses include anywhere from 2 to 13 lessons and take between 8 and 45 minutes for completion. (2) Growth Mindset for Parents Details: This program offer just 1 online course to encourage growth mindset in children. The course has 10 lessons and take approximately 30 minutes to complete. (3) Growth Mindset for Mentors Details: This program offer just 1 online course to encourage growth mindset in children. The course has 17 lessons and take approximately 60 minutes to complete. (4) Professional Development Details: This course is designed for educator teams. It includes 7 lessons and takes approximately 90 minutes to complete. (5) Resource Library Details: Hundreds of resources available in both English and Spanish on promoting learning mindsets. Resources include, but are not limited to, downloaded PowerPoint presentations, videos, activities, brochures, posters, and practice recommendations. The Mini Minds Difference: (+) Mini Minds offer programs and services that are available both to the children themselves and parents/caregivers. (+) Mini Minds offers 7 different workshops for parents that are an hour and a half long and provide resources to take home so that parents may implement what they have learned. (-) Mini Minds services have a cost and this company provides all resources free of charge. CULTIVATING MINI MINDS: MARKETING THE BRAND 45 Left Brain Buddha Online Platform Description: This website, developed in 2013, promotes a modern mindful life. Its resources and materials are largely designed for adults and teens with any level of mindfulness experience. However, a section of their website is dedicated to teaching mindfulness to kids. Programs: (1) Mindfulness Courses Details: This organization offers 4 mindfulness courses for adults: mindfulness for beginners (6-week course), mindfulness for mothers (6-week course), mindfulness for teachers (5-week course), and mindfulness for stress reduction (4-week course). Each course includes written content, videos, audio meditations, and worksheets/journal prompts. Price: Prices range from $97 to $159 (2) Mindfulness Coaching Details: Personalized online coaching available for adults and teens to improve wellbeing and reduce stress. Coaching includes 45-minute sessions once a week with personalized instruction, guided meditations, and support. Pricing: 8 weeks for $449, 12 weeks for $649 (3) Blog Details: Resource and articles made for adults that occasionally cover topics relating to mindful practice in children. Price: Free The Mini Minds Difference: (+) Mini Minds prices are a dramatically lower cost per session. (+) Mini Minds offers services and programs to families including children, teens, and parents. Therefore, they serve a wider variety of clients. (-) This organization offers many resources and programs not available at Mini Minds including personalized coaching and a blog. CULTIVATING MINI MINDS: MARKETING THE BRAND 46 Mindset Works Online Platform Description: This website designed for students, parents, and educators to learn about growth mindset. It provides extensive education on the growth mindset culture including what growth mindset is, why growth mindset matters, how growth mindset works, and how to change your mindset. The company employs practitioners, coaches, leaders, and researchers. Programs: (1) Brainology Details: This program is offered for two settings, for school and for home. Both teach students how to develop a growth mindset through animations and activities. Pricing: For schools $20/student (must have 5+ students); for home $50/user (2) MindsetMaker Details: A professional development course for teachers and staff to help creature a culture of growth mindset. Program includes videos, discussion boards, activities, online assessments, and an implementation guide. Pricing: $75/educator or $2,000/site (up to 75 educators) (3) SchoolKit Details: Tools made for administrators, teachers, and students for immersion in growth mindset. Includes access to Brainology for Students and MindsetMaker for educators. It is available for one academic year. Pricing: $7,500 for the first year and $5,000 for subsequent years (4) Leader Kit Details: Resource for use by school leaders to cultivate growth mindset within school community. Includes 150-page book, videos, PowerPoint presentations, and professional development activities. Price: $250/kit (5) Growing Early Mindsets Details: A literacy-based program that emphasizes growth mindset and mindfulness. This program includes 10 childrens books and 3 teacher guides. Pricing: $550/class sets The Mini Minds Difference: (+) Mini Minds provides face-to-face services so they are more involved in care/services. (+) Mini Minds teaches more than just growth mindset as it only a part of brain-based learning. (-) Mini Minds doesnt offer unlimited access to resource after initial investment. Mini Minds requires active services instead of passive through books, videos, and curriculum. CULTIVATING MINI MINDS: MARKETING THE BRAND 47 Mind Yeti Online Platform & App Description: This entity was developed in partnership with the nonprofit, Committee for Children. Its resources focus on improving socio-emotional learning in children and are used as a coping tool. The products are designed for children for use through parents/caregivers and educators. The goals of the resources include: reaching a calm state, focusing attention, destressing, forming better relationships, and improving sleep. The Mind Yeti App can be used on an apple or android device and simply requires a device with a browser and internet connection. Programs: (1) Mind Yeti Basic Details: An intro into mindfulness with access to 15 guided meditations for kids. Price: Free (2) Mind Yeti Premium Details: Provides access to the full library of the organization. This includes 80+ mindfulness sessions with topics such as: calm down, focus, get along, reset, create, go to sleep, breath, thoughts, feelings, body, senses, gratitude, and kindness. Lessons are typically anywhere from 4 to 10 minutes in length. Price: Monthly subscription $8/month per user; annual subscription $4.92/month per user (3) Mind Yeti for Schools Details: Full access to Mind Yeti Premium subscription to promote a clam and positive culture within schools. Purchase of this product allows for access by unlimited staff per location. Price: $41.58/month per school The Mini Minds Difference: (+) Mini Minds classes/programs are significantly longer than the resources offered through this organization so consumers can get more for their money. (+) Mini Minds emphasizes more than just mindfulness in their services, they use a broad brain-based learning approach. (-) Mini Minds does not market its programs/services to educators and may be missing serving this population. CULTIVATING MINI MINDS: MARKETING THE BRAND 48 Kids Relaxation Online Platform Description: Kids Relaxation is owned and operated by a single person who is a school psychologist and certified coach. Products are made available to either parents or educators for use with children. The focus of the products is on relaxation and mindfulness. Programs: (1) Coaching & Consulting Details: Available for parents, educators, and children. Sessions provide tips, activities, and applicable/relevant products. Sessions can take place via either phone call, skype, or face-to-face. Initial consultations are 90 minutes in durations and follow-up appointments are 60 minutes. Price: Price not disclosed (2) E-books Details: Three books available covering the topics deep breathing and guided imagery. Price: $3.95-$5.95 (3) MP3 & MP4 Downloads Details: Files including guided imagery scripts. There are 17 different topics such as finding strength in the storm, planting a seed of love, and the treasure within you. Price: 99 cents per download (4) CD Details: Titled Adventures Within and promotes positive self-talk. This product includes several guided imagery scripts with an accompanying booklet. Designed for use with children ages 5-12. Price: $10.95 The Mini Minds Difference: (+) Mini Minds provides face-to-face coaching and consultation to parents/caregivers as part of care for their children. This is not an additional charge that they must pay for. (+) Mini Minds uses a multi-disciplinary (mental health therapist, occupational therapist, etc.) approach during development of classes/programs/ services. (-) Mini Minds resources are not available on demand and program/class times may not meet everyones availability needs. CULTIVATING MINI MINDS: MARKETING THE BRAND 49 Brain Talk Curriculum Online Description: This organization, co-owned by a speech-language pathologist and educational therapist, teaches kids about the brain as a part of mindfulness, cognitive-behavioral therapy, and socio-emotional learning. They aim to teach children about the connection between their thoughts, feelings, and behavior through metacognition. Programs: (1) Brain Talk Curriculum Details: This is the organizations primary product. It consists of 8 units with whiteboard animated videos, lesson plans, video scripts, student worksheets and activities, a glossary with student vocabulary activities, and home generalization materials. It is designed to be used by therapists, teachers, or parents/caregivers and can be used in an individual or group setting. Each of the lessons includes activities for children broken up into the following age groups: early elementary, upper elementary, and middle/high school. Price: $70 for a year-long subscription (2) Trainings Details: Individual, small group, or site wide training to provide more in-depth information on the curriculum. Can be provided face-to-face in select California areas or virtually. Price: Price not disclosed. The Mini Minds Difference: (+) Mini Minds has a variety of programs/classes/services that teaches different concepts within brain-based learning as opposed to the single curricula that is offered through this organization. (+) Mini Minds provides face-to-face personalized therapy to help teach brain-based learning in a manner that is unique to the individual instead of being a set curriculum. (-) This organization utilizes the same theory as Mini Minds to teach children. They are a direct competitor and can provide services to a greater number of people due to their online presence. CULTIVATING MINI MINDS: MARKETING THE BRAND Appendix C Figure 1. Mini Minds January calendar with all available classes, programs, and workshops. Figure 2. Mini Minds February calendar with all available classes, programs, and workshops. 50 CULTIVATING MINI MINDS: MARKETING THE BRAND Figure 3. Mini Minds March calendar with all available classes, programs, and workshops. Figure 4. Mini Minds April calendar with all available classes, programs, and workshops. 51 CULTIVATING MINI MINDS: MARKETING THE BRAND Appendix D 52 CULTIVATING MINI MINDS: MARKETING THE BRAND 53 CULTIVATING MINI MINDS: MARKETING THE BRAND 54 CULTIVATING MINI MINDS: MARKETING THE BRAND 55 CULTIVATING MINI MINDS: MARKETING THE BRAND 56 CULTIVATING MINI MINDS: MARKETING THE BRAND 57 CULTIVATING MINI MINDS: MARKETING THE BRAND Figure 1. Mini Minds February e-newsletter. 58 CULTIVATING MINI MINDS: MARKETING THE BRAND 59 CULTIVATING MINI MINDS: MARKETING THE BRAND 60 CULTIVATING MINI MINDS: MARKETING THE BRAND 61 CULTIVATING MINI MINDS: MARKETING THE BRAND 62 CULTIVATING MINI MINDS: MARKETING THE BRAND Figure 2. Mini Minds March e-newsleter. 63 CULTIVATING MINI MINDS: MARKETING THE BRAND 64 CULTIVATING MINI MINDS: MARKETING THE BRAND 65 CULTIVATING MINI MINDS: MARKETING THE BRAND 66 CULTIVATING MINI MINDS: MARKETING THE BRAND 67 CULTIVATING MINI MINDS: MARKETING THE BRAND Figure 3. Mini Minds April e-newsletter. 68 CULTIVATING MINI MINDS: MARKETING THE BRAND Appendix E 69 CULTIVATING MINI MINDS: MARKETING THE BRAND Appendix F 70 CULTIVATING MINI MINDS: MARKETING THE BRAND 71 CULTIVATING MINI MINDS: MARKETING THE BRAND 72 CULTIVATING MINI MINDS: MARKETING THE BRAND 73 CULTIVATING MINI MINDS: MARKETING THE BRAND 74 CULTIVATING MINI MINDS: MARKETING THE BRAND 75 CULTIVATING MINI MINDS: MARKETING THE BRAND 76 CULTIVATING MINI MINDS: MARKETING THE BRAND 77 CULTIVATING MINI MINDS: MARKETING THE BRAND 78 CULTIVATING MINI MINDS: MARKETING THE BRAND 79 CULTIVATING MINI MINDS: MARKETING THE BRAND 80 CULTIVATING MINI MINDS: MARKETING THE BRAND Appendix G 81 CULTIVATING MINI MINDS: MARKETING THE BRAND 82 CULTIVATING MINI MINDS: MARKETING THE BRAND 83 CULTIVATING MINI MINDS: MARKETING THE BRAND 84 CULTIVATING MINI MINDS: MARKETING THE BRAND 85 CULTIVATING MINI MINDS: MARKETING THE BRAND 86 CULTIVATING MINI MINDS: MARKETING THE BRAND 87 CULTIVATING MINI MINDS: MARKETING THE BRAND 88 Appendix H 1. What are your most common parenting challenges? Types as many topics as you wish. 2. What are the top three parenting challenges for which you would seek out advice? 3. Through what methods do you typically seek out advice? o Books o Websites o Conversation with friends/family o Conversation with professionals (pediatrician, therapist, etc.) o Blogs o YouTube/Videos o Other (please specify): 4. What books or websites have you purchased/visited for advice? 5. If you purchased books, have you read them? o Yes o No o Not applicable 6. If you have purchased books, and not read them, what has prevented you from reading them? 7. What is the best way for you to receive advice/support? o Attending a 1.5-hour workshop on a weeknight o Attending a 1.5-hour workshop on a weekend o Attending a 30-minute workshop on a weeknight o Attending a 30-minute workshop on a weekend o Live videos with the ability to ask real time questions o Downloadable videos that you can watch at your own pace o Other (please specify): 8. Which of our current workshops (www.miniminds.org/workshops) are of most interest to you? 9. What has prevented you from attending a workshop in the past? 10. The purpose of our workshops is to help parents, teachers, and other caregivers to build a foundation of knowledge for growth and change. What other feedback do you have as to how we can best achieve this mission?  ...

... Running head: THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONING PROGRAMS 1 The Development of Sensorimotor and Executive Functioning Group Programs Ketmany Guenin, OTS May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Alison Nichols, OTR, OTD THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONING GROUP PROGRAMS A Capstone Project Entitled The Development of Sensorimotor and Executive Functioning Group Programs Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Ketmany Guenin, OTS Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 3 Abstract Theracare Outpatient Therapy Services provides skilled therapies to children in order to maximize independence in their lives. Prior summer programs have been implemented in the past but with limited research and organization. The purpose of this Doctoral Capstone Experience (DCE) project was to utilize evidenced-based interventions in research in order to develop summer group programs, as well as clearly outline program interventions, skill sets being addressed, timeline of activities, and goals and objectives. A sensorimotor group and executive functioning group program were developed and partially implemented in order to address skills beginning with sensory regulation and sensorimotor functioning, progressing to executive functioning and social skills. Staff were educated and implemented similar group interventions in individual treatment sessions by pairing up clients based on timing of treatment sessions, age, and goals. Families were educated on the purpose of the group programs as well as provided with a resource addressing goals and objectives. The staff understood program goals and objectives and were comfortable implementing the groups based on the outlines provided for each day. Full implementation of the programs will be implemented in the summer of 2019 by the occupational therapists. Background Occupational therapys role in pediatrics is to work not only with the child, but with families and caregivers to allow for a more active role in participating in activities/occupations that are meaningful (More, 2015). Pediatric occupational therapists recommend appropriate interventions for all abilities and skill levels to enhance the childs development, play, learning, and overall occupational performance (More, 2015). A holistic approach is taken in the THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 4 occupational therapy (OT) profession in that OT practitioners often communicate with parents, caregivers, and other professions to ensure collaborative care so that maximal potential can be met for the child and their family. The occupational therapists specific role is to identify barriers or deficits and provide individualized interventions, adapt activities, environmental conditions, and needed materials to improve the overall functional performance for the child (More, 2015). The four overarching themes that occupational therapists target are needs relating to development, education, injuries, and emotional-behavior skills (More 2015). Within these main themes, a number of subsections are addressed. These can include, but are not limited to; meeting developmental milestones, activities of daily living, social skills, executive functioning skills, school performance, strengthening, cognition, sensory processing, visual motor and perception, coping strategies, emotional regulation skills, and self-advocacy skills (More, 2015). Purpose The Doctoral Capstone Experience (DCE) project was completed at Theracare Outpatient Therapy Services (TOTS) clinic in Fishers, Indiana. The majority of children served at the clinic are school-aged children; therefore, a majority of treatment sessions are held in the afternoon and evening hours to accommodate school schedules. Due to the majority of children being schoolaged, a common theme of skills treated include executive functioning, visual motor/perceptual skills, social skills, sensory processing, motor functioning, fine motor skills, and school performance. With this population in mind, the TOTS clinic concluded a summer group program would be beneficial. The purpose of the DCE project was to utilize research supporting the central nervous systems pyramid of learning and how implementing sensory integration can improve sensory dysregulation and motor performance, progressing to executive functioning social skills THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 5 (Williams & Shellenberger, 1996). With the children being school-aged, group environments are age-appropriate and social skills were crucial to target in the group dynamic. There were two summer groups, a younger group targeting sensory integration, motor performance, and social skills, and an older group, targeting motor planning, executive functioning, and social skills. Theory/Model The model that was utilized throughout this experience is the Person-EnvironmentOccupation-Performance (PEOP) model. This model encompasses the function between the interaction of the person, their environment, and their occupations (Cole & Tufano, 2008). People perform occupations within their different environments, which can positively or negatively impact occupational performance (Cole & Tufano, 2008). For the purpose of the development of group programs, the therapist is aware of the barriers and deficits a client faces that hinder the optimal occupational performance for a person in their environment. This model will guide the development in improving occupational performance for a client in their home, school, and community-based environments. An overarching theory that is believed to capture the purpose of the program development and targeted skills is the Sensory Integration frame of reference. Beginning in the 1960s, Jean Ayres was an occupational therapist and first research to explore sensory integrations impact on brain processes (Cole & Tufano, 2008). Resulting from this research, the sensory integration approach known as Ayres Sensory Integration was fully developed in the 1970s. Ayres created standardized and nonstandardized tests, intervention principles, and a theoretical framework to capture effective ways to identify sensory deficits and to improve sensory dysfunction (Cole & Tufano, 2008). Interventions will promote optimal postural control, ocular motor areas, bilateral coordination, motor control, and motor praxis (Cole & THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 6 Tufano, 2008). Sensory integration is present across the lifespan, which can result in sensory function or sensory dysfunction. Ayres explored the tactile, vestibular, and proprioceptive systems and how these senses progress throughout life (Case-Smith & OBrien, 2015). Development of these senses allow for sensory integrative abilities to mature resulting in skills such as postural control, grasping of objects, sustaining prone positioning, self-feeding, and crawling/walking to occur within the first year of life (Case-Smith & OBrien, 2015). As the child becomes more mobile in the second year, novel movements are performed introducing new sensory experiences. Motor skills, praxis, and ideation are developing, allowing for the child to use sensory integration to engage in more movements (Case-Smith & OBrien, 2015). Ayres considered years three through seven a crucial period for a child due to the impact of sensory integration and how the brain organizes the information. Children are challenged with age-appropriate tasks that include visual-motor skills, motor-panning skills, fine motor skills, and behavioral regulation, such as crafts, drawing, playground equipment, scissors, musical instruments, and completing homework (Case-Smith & OBrien, 2015). When the brain has difficulty organizing and interpreting sensory integration, challenges in functional performance in these activities occur (Case-Smith & OBrien, 2015). In this age range, children are often around peers in a school-based setting, which can impact social skills and functional communication as well. The majority of children at TOTS clinic are challenged with functional tasks in everyday life due to sensory disorganization. Currently, children begin their sessions with vestibular, deep tactile, and proprioceptive input to help organize the sensory system to be able to improve functional performance in age-appropriate tasks. When creating the groups, a social aspect was THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 7 included when group interventions were utilized, while also working on emotional regulation, coping mechanisms, and functional communication. Literature Review According to central nervous system development, a pyramid of systems is developed throughout childhood (Tarver, 2018). The foundational layer is development of the sensory system, followed by sensorimotor development. More complex functions of visual perceptual and visual motor skills are then developed leading to the top of the pyramid which is cognitive intellect development, including executive function, academia, and social skills (OConnor, Lambe, Gleeson, & Henry, 2016). Within this pyramid of development, the foundational layer of developing and regulating the sensory systems is crucial for proper development of more complex skills. Without proper development and organization of the sensory systems, motor functioning, visual perceptual skills, and higher cognitive skills are then impacted negatively impacting academic performance and social and emotional development (OConnor et al., 2016; Tarver, 2018). The following subsections outlined follow the pyramid of development and effective treatment strategies improving the foundational layers of sensory regulation, leading up to more complex skills as executive functioning and social skills. Sensory Integration Approach on Sensory Dysregulation Sensory processing disorders may include deficits related to detecting, modulating, interpreting or responding to sensory stimuli. Sensory modulation disorders indicate difficulty related to regulation of the degree or intensity of a response to sensory input (Miller, Coll & Schoen, 2007). Sensory modulation disorder is a common comorbid diagnosis estimated from 40% to 80% for people diagnosed with a developmental disability (Miller et al., 2007). Dysfunction in sensory processing can also lead to behavioral problems due to the inability to THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 8 interpret sensory information; therefore, a child may lack the ability to regulate or organize behavioral responses. (Wan Yunus, Liu, Bissett, & Penkala, 2015). Lacking these skills allows for inappropriate behavioral responses to occur, impacting school performance, social skills, and daily activities (Wan Yunus et al., 2015). In a study looking at the effectiveness of occupational therapy for children with sensory modulation disorder, occupational therapists provided ten weeks of sensory integration therapy to children five years or older, while a control group received either no treatment, or an activity protocol in which interventions did not target specific deficits. (Miller et al., 2007). The sensory integration therapy was found to be effective in that the treatment group made significant changes compared to the control group on the Goal Attainment Scale as well as on the Attention and Cognitive/Social subtests on the (Leiter-R Parent Rating Scale) (Miller et al., 2007). Functional performance and participation in daily activities have also been improved by sensory integration. Interventions followed by the principles of sensory integration as outlined by Ayres, which include tactile, vestibular, and proprioceptive input activities, have been proven effective with functional outcomes, as well as positive changes in behavioral problems in children (Schaaf et al., 2014; Wan Yunus et al., 2015). In past research, functional outcomes have been measured using the Goal Attainment Scaling, in which higher scores have been recorded after sensory integration therapy (Schaaf et al., 2014). Additional improvements in functional performance have included higher independence in self-care tasks and social activities, decreased sensory behaviors, and overall less reported caregiver assistance during daily life activities (Schaaf et al., 2014; Wan Yunus et al., 2015). Sensory Integration Approach to Motor Performance THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP PROGRAMS 9 Sensory integration has been proven to show multiple positive effects on motor performance. As indicated in several studies, the impact of a sensory integration program can show improvements in motor performance among a variety of populations. In research, a variety of sensory-based interventions targeting the vestibular, proprioceptive, and tactile systems have been suggested to be effective in improving motor performance in children. Examples of activities that can be used to target these systems include weight bearing, jumping, carrying heavy objects, incorporation of balance, swinging board, climbing, spinning chairs, and more (Humphries et al., 2002; Shemy & Mohamed, 2017). Fine motor activities that can be used in combination with these activities include zipping, puzzles, scissors, locks and keys, maintaining proper pencil grip, writing, manipulation, or games that require finger control (Shemy & Mohamed, 2017). From this type of treatment, motor performance areas that have been improved include upper-limb coordination, bilateral coordination, balance, fine motor skills, and motor planning skills (Humphries et al., 2002; Karim & Mohammed, 2015; Shemy & Mohamed, 2017). Five articles in a meta-analysis indicated a significantly positive treatment effect in motor outcomes after using a sensory integration approach in treatment (May-Beson & Koomar, 2010). These authors noted that research indicated that a sensory integration approach is successful in improving motor performance related to fine and gross motor skills, motor planning skills, and praxis (May-Benson & Koomar, 2010). In another article in the meta-analysis, moderate effects in motor performance areas after using a sensory integration approach. (May-Benson & Koomar, 2010). Executive Functioning Progressing to more complex skills in the central nervous systems pyramid of learning, executive functioning and social skills are considered to be skills utilizing cognitive intellect, THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 10 PROGRAMS which are crucial for independence in academic learning, activities of daily living, and behavior. (Williams & Shellenberger, 1996). Executive functioning involves a set of skills used to perform activities that require planning, organizing, strategizing, paying attention, remembering details, and managing time and space (Understood Team, 2013). Children who have learning disabilities or Attention-Deficit/Hyperactivity Disorder (ADHD) often have difficulty using these skills which causes difficulties in school performance, socialization, and daily activities (Understood Team, 2013). As occupational therapists, interventions can be provided to improve these executive functioning skills to maximize participation and performance. Diamond & Lee (2011) assessed effective interventions used to improve executive functioning skills four to twelve years old. Interventions included computerized training, noncomputerized games, aerobics, martial arts, yoga, and mindfulness (Diamond & Lee, 2011). Results indicated that interventions of aerobics, martial arts, and yoga were effective in improving executive functioning skills (Diamond & Lee, 2011). Additionally, an intensive five week working memory training program was implemented in children with the diagnosis of ADHD between the ages of 7-17. The working memory training program included both visuospatial and verbal exercises on a computer-based training program. Participants completed 25 sessions over six weeks (Beck, Hanson, Puffenberger, & Benninger, 2010). Improvements were noted in working memory, initiation, and planning and organizing skills (Beck, et al., 2010). Social Skills School-aged children who have difficulties with peer interactions or general social skills often demonstrate deficits in school performance, executive functioning skills, play skills, and independence in daily activities or routines (Elksnin & Elksnin, 1998). Lacking basic skills such as sharing, responding to social cues, problem-solving, cooperative play, and turn taking can THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 11 PROGRAMS limit participation and performance in children with a variety of diagnoses, including autism and ADHD (Wilkes-Gillan, Bundy, Cordier, Lincoln & Chen, 2016). As a result of these deficits, children have fewer meaningful relationships and have fewer opportunities for social interactions such as play dates (Wilkes-Gillan et al., 2016). Children are then at risk for falling behind same aged peers developmentally and socially in school, home, and community-based settings. There are several therapeutic benefits that group interventions can offer to children with disabilities to improve functional outcomes. Targeting basic social skills in play-based interventions as well as meaningful occupations such as art, games, or cooking, have been found to improve social skills, motor functioning skills, and executive functioning skills (Gol & Jarus, 2005). Also within a group setting, increased parallel play and decreased solitary play can be facilitated to improve overall play skills among children (Wilkes-Gillan et al., 2016). Screening and Evaluation There is limited research that has been conducted that has focused on effectiveness of group therapy in the pediatric setting that target more than social skills. For the purpose of this project, a combination of evidence-based research that supports targeted interventions addressed in the literature review and evidence-based research that supports group interventions were used to create a four-session program for a sensorimotor group and an executive functioning group. After discussions with staff, staff wanted a clearly outlined program to follow along with educational resources to provide for families. Staff also indicated this need by reporting that there is a need for social skills to be addressed due to lack of skills observed in individual treatment sessions. The group with children aged seven and younger targeted sensory integration, social skills, and the effects on motor performance and sensory dysregulation (Charney et al., 2017; Karim & Mohammed, 2015; Shemy & Mohamed). The group with children ages seven THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 12 PROGRAMS and older would target executive functioning skills in daily life tasks, some motor performance, and social skills (Diamond & Lee, 2011; Beck et al., 2010, Charney et al., 2017). Clients who were seven would be placed in the group that the therapist felt most appropriate for the client. The questionnaire created for the younger age group was titled the Sensorimotor Group Questionnaire, and the questionnaire created for the older group was titled the Executive Functioning Group Questionnaire. Both the sensorimotor and executive functioning group questionnaires consisted of 12 questions and was paper-based. Quantitative questions were created including yes/no responses, a Likert Scale of 1-5, and multiple-choice responses to retrieve subjective and objective information regarding the clients skill sets and were provided to caregivers. Questions targeted experience in group settings, opinions of a group-based program, the knowledge of their childs current plan of care, targeted skills that parents believe their child would benefit from based on the level of knowledge, education of program goals and objectives, and if their child planned to participate in the group program in the summer. The questionnaires were distributed to families whose children were appropriate for a group-based program and who had similar goals in individual plans of care. The intervention-based questions in the sensorimotor group questionnaire included were related to sensory dysregulation (Miller et al., 2007; Schaaf et al., 2014 Wan Yunus et al., 2015;), bilateral coordination (May-Benson & Koomar, 2010; Shemy & Mohamed, 2015), motor planning (Humphries et al., 2017; Shemy & Mohamed, 2015), emotional regulation (Wan Yunus et al., 2015), social skills (Charney et al., 2017; Gol & Jarus, 2005), and fine motor skills (MayBenson & Koomar, 2010; Shemy & Mohamed, 2015). The intervention-based questions in the executive functioning group questionnaire included sensory dysregulation (Miller et al., 2007; Schaaf et al., 2014; Wan Yunus et al., 2015), general executive functioning skills (Beck et al., THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 13 PROGRAMS 2010; Diamond & Lee, 2011), fine motor skills (May-Benson & Koomar, 2010; Shemy & Mohamed, 2015), emotional regulation (Wan Yunus et al., 2015), social skills (Charney et al., 2017; Gol & Jarus, 2005) and motor planning (Humphries et al., 2017, May-Benson & Koomar, 2010; Shemy & Mohamed, 2015).. Both the sensorimotor group and executive functioning group questionnaires were distributed among families dependent on if the child was appropriate for the group program based on the topics and interventions listed above. The following responses to the questionnaires are included in Appendix A: Sensorimotor Group Questionnaire and Appendix B: Executive Functioning Group Questionnaire. There were nine sensorimotor group questionnaires distributed and fifteen distributed to the executive functioning group, with 100 percent completion rate for both groups. Results from the surveys indicated that a group format would be beneficial and that group members engaging in similar skill sets would be beneficial for the children as well. The majority of parents felt educated on their childs plan of care; therefore, there is higher accuracy in responses of skills their child is working on. The results of the surveys were used to facilitate the summer group program development. Group-based interventions are more appropriate in some settings compared to others. Within traditional practice settings, group interventions may be beneficial among inpatient rehabilitation, school settings, long term care facilities, community-based settings, or skilled nursing facilities. Cole & Tufano (2008) states that group interventions can be beneficial with adults in adult day care or skilled nursing facilities by targeting sensory stimulation to promote optimal arousal level in clients. In these settings, other skills such as strengthening, endurance, social participation, or cognition may be common skills worked on, allowing for positive benefits of group interventions. In older adults with chronic illness, group interventions have THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 14 PROGRAMS been found to be effective in improving quality of life and occupational performance by goal setting, psychoeducation, and problem-solving through achieving skill mastery (AOTA, 2018). For emerging practice areas, people with mental illness may benefit from group interventions targeting motor planning and the sensory system. Lorna Jean King was successful in creating group interventions for clients with mental illness by utilizing sensory integrative techniques, similar to techniques Ayres used with children (Cole & Tufano, 2008). Interventions targeted gross motor movements via proprioceptive or vestibular input to normalize muscle patterns and improve range of motion to promote spontaneous motor responses (Cole & Tufano, 2008). Emerging practice areas and some traditional practice areas that may not benefit from group-based interventions could include driving rehabilitation, home health, early intervention, outpatient orthopedics, outpatient neurology, and acute care. Possible reasons that group interventions would not be beneficial would be because of length of stay, skills, age range, and locations. For example, early intervention or home health settings would not be ideal for groupbased interventions due to individualized interventions being completed in the clients home. For acute care, the goal is to stabilize the patients medical status, so implementing group activities would be difficult to due individual restrictions or critical medical condition (AOTA, 2019). Driving rehabilitation would also not be ideal for group interventions due to the difference of activity demands, risks, and goals that would vary among individuals (AOTA, 2019). For the purpose of the program being developed at TOTS clinic, common factors of age, diagnoses, goals, duration of individualized treatment, and skills being worked on allowed for successful creation of group-based interventions. Activities could be graded for individuals, but still targeted the same goals due to the previous common factors listed. After completion of a THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 15 PROGRAMS needs assessment, parents and caregivers of patients indicated the need for a summer group program and felt education on goals and objectives for the group members would be beneficial. Implementation During the implementation phase, the programs were fully developed for the sensorimotor and executive functioning groups and organized into a binder for staff to implement in their entirety during the summer of 2019. Unfortunately, the full program was not able to be implemented during spring of 2019 because group programs are only scheduled for summers due to patient and therapist schedules. Implementation of interventions did occur among groups of two to four clients at a time. The binder outlined the list of interventions and time allotted for each activity for each day. Included with the list of interventions were all the skill sets that would be targeted within each specific activity. Interventions were created so that grading of activities could be applied when necessary in an attempt to allow for maximum participation among all group members. The DCE student spent time early on in the implementation phase discussing with families the purpose of interventions. The DCE student allowed time to educate the families of other occupational therapists clients as well. Families were educated on the process of how the DCE student collaborated with therapists and matched up clients to put them in groups of two to four based on similar goals and abilities. The DCE student also provided education on the incorporation of social skills and focusing on appropriate social interactions throughout the sessions. Families were accepting of the education and gave their consent for the client to participate with peers. Three occupational therapists were educated in an informal in-service on the purpose of the replication of interventions, types of interventions, and skill sets being targeted. Following THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 16 PROGRAMS the education, time was spent looking into the occupational therapists schedules and plans of care to correlate incorporating the interventions among two or more patients who were working on similar skills. Once schedules were matched up, collaboration among the DCE student and occupational therapists occurred to allow for maximum pairing of clients. The DCE student planned the sessions and collaborated with the therapists before, during, and after sessions. As a result of the needs assessment, group interventions heavily focused on social skills in the small groups. Social skills that were addressed included: introductions, telling the peer(s) something about themselves, asking the peer(s) something about their self, explanation of instructions to activities and games, impulse control with appropriate timing of stories, and turntaking. The DCE student and other therapists found it beneficial to target appropriate social interactions to allow for maximum participation. Clients were more engaged in sessions and interacted more with peers once social skills were targeted more frequently in sessions. The sessions were outlined in that half of the session would be individual-based and the second half would be group-based. The first part of the session primarily focused on organization of the sensory system, targeting the vestibular, deep tactile, and proprioceptive systems. The second half of the session included introductions among group members followed by completing activities that could target a variety of skills. All of the interventions allowed for functional communication and the skill sets that would address the clients goals. Overall, the replication of interventions among groups of two or more clients went very well during the implementation phase. An example of a session included targeting executive functioning skills among four clients. Specifically, social interactions, motor planning, working memory, impulse control, and reading were all a part of the activity. One patient would pick three cards, each with a different motor planning direction written on it. The client would read THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 17 PROGRAMS the directions to another group member who would then carry out the movements. The client who read the directions would work on encouraging the patient if they were having a difficult time, or to assist them in carrying out the motor plan. Another example of a session was between three patients who engaged in the game of Candy Land. This time, the younger age group engaged in the activities targeting motor planning, sensory integration, sequencing, bilateral coordination, and social skills. Each color represented a different task that was to be completed. For example, red was buttoning, blue was using a scooter board, orange was telling a short story or fun fact, purple was completing an obstacle course. This activity was successful in that any skill could be targeted while also in a cotreatment with another discipline, activities could be graded, and social skills could be targeted. Implementation of small group interventions was insightful in that the DCE student was able to target multiple skills in one activity. By utilizing this method, the clients were more engaged since there were opportunities to perform multiple skill sets rather than only targeting a challenging skill. The DCE student also allowed for the children to choose parts of activities to make the sessions more meaningful and engaging. This form of implementation was organized, gave the clients some control of activities, and addressed multiple goals. Leadership Leadership skills were required to promote a successful implementation phase. Leadership qualities that were utilized were: strong communication, being assertive and direct, creative and innovative, confidence, and maintaining a positive attitude. I provided group interventions to children that I had no previous experience with, so utilizing these qualities promoted for successful therapy sessions. THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 18 PROGRAMS I was assertive with collaborating multiple times a day with other occupational, physical, and speech therapists to ensure quality care was provided during the small group sessions. Along with collaboration among therapists, I utilized confidence and a positive attitude to build rapport with families and educate them on the interventions and skill sets being targeted. Families were very receptive to their childs plan of care, so education was provided week by week on the progress made in sessions. With implementing a somewhat new program to the clinic, frequent questions were asked during the implementation phase that I was required to answer and educate on. This promoted the opportunity for leadership skills to become further developed since education of the groups solely came from me. Over the course of the weeks, families became even more accepting of group implementation and would as me more questions compared to the clients familiar therapist. This allowed me to develop more confidence and assertiveness when providing individual and group interventions. Staff Development During the implementation phase, staff development was improved. As I correlated schedules, I also educated staff on select interventions that would be appropriate for them to implement if I was not available to implement. I would receive feedback from the other therapists as well as therapists collaborating among themselves, further promoting staff development. Interventions were implemented between occupational therapists or an occupational therapist with a speech or physical therapist. The occupational therapists would lead the session regarding addressing social skills and setting up activities that the physical or speech therapists could be involved in as well. Overall, the implementation phase facilitated my growth, as well as the employed therapists on site. Staff development will further develop once I THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 19 PROGRAMS complete the project, evidenced by the staff continuing to implement group interventions going forward due to the clearly outlined binder that was created. Outcomes & Discontinuation An in-service was presented at the clinic for the four occupational therapists on staff. The presentation specifically covered the information in the binder including interventions and schedules of each day. After familiarization of implementing similar interventions during the implementation phase, the occupational therapists were then educated on specific interventions that the DCE student created and provided. Positive feedback was provided from the occupational therapists as well as comments, questions, and further ideas that were discussed to ensure optimal implementation in the summer of 2019. The occupational therapists agreed to implement the program as developed by the DCE student and to continue incorporating small group interventions when appropriate until the summer program was implemented. The occupational therapists also agreed to use similar formatting of group programs in future summers because of the organization and clarity of skill sets that were outlined in the binder. A short survey was provided following the in-service to serve as a simple outcome measure. The outcome measure addressed understanding of interventions, comfort implementing provided interventions, ability to grade activities, comfort educating families, feasibility of following the day-to-day timeline, and available space and resources. (See Appendix C: Staff Survey). The general results indicated that the therapists would feel comfortable implementing the program, the activities were able to be graded when needed, and that the outline of the program would be easy to follow. A resource that was provided in the binder was a goals and objectives sheet for therapists to pass out to families in preparation for the summer groups (See Appendix D: Goals and THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 20 PROGRAMS Objectives Resource). The DCE student chose to use this resource in the discontinuation phase so that the therapists would be responsible for handing them out after the DCE student leaves, allowing for more carryover. A resource of goals and objectives would allow for a clear and concise educational handout that families can read and take home. In the implementation phase, families were educated on the purpose of group interventions as well as the purpose for targeting social skills. With a goals and objectives resource, families will already understand the overall purpose of group interventions but will then be able to understand specific goals and objectives with the use of this resource. During the implementation phase, objectives were not addressed in full due to time restraints and availability of participants, but targeted activities did address each goal to some extent. The societal need that was addressed was targeting social skills for children with disabilities during functional activities in order to improve overall independence and participation in meaningful occupations. As stated in the literature review, social behaviors have been found to improve from the combination of sensory and social group interventions (Charney et al., 2017). The group program aimed at targeting social skills while using a sensory and sensorimotor approach. Reports of higher independence in self-care tasks and social activities, decreased sensory behaviors, and overall less reported caregiver assistance during daily life activities are all benefits from implementing sensory and social interventions (Schaaf et al., 2014). By addressing social skills in a group-based setting, children with disabilities were allowed an opportunity to work on functional communication that could be transferred to the classroom setting, home setting, and community settings. Education on social skills occurred very frequently with caregivers following individualized therapy sessions. Social skills were a THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 21 PROGRAMS topic that parents and caregivers raised concerns about regarding how to improve these skills with their child. The DCE student emphasized the importance of the exposure to address social skills while working on functional skills too. Overall Learning Communication Styles Communication was a vital factor during this experience in many ways. I communicated with several individuals including therapists, families, teachers, staff, and the clients themselves throughout the entire process. Communication was expressed in a variety of ways in order to ensure success of the program, build a good rapport with families, and have a strong work relationship with the therapists on site. I was expected to communicate progress and education to families, rationale of interventions to teachers or staff, communicate problems or concerns, and advocate for clients. Communication was expressed through written, non-verbal, and oral methods to effectively provide a holistic care approach to meet the needs of the clients. Written communication was provided throughout the project with clients who received therapy somewhere other than the clinic. Communication between these families occurred via a written daily note that was sent home to families. Regarding the group programs, the written paperwork of the questionnaires and added notes in the daily note were the primary forms of communication. This form of communication was effective in that families would reach out via text or email to the therapist confirming the education or notes that were sent to them. Verbal communication was provided with different professionals throughout the entire process. I communicated with the families and kept them informed of the purpose of the program, what to expect in the process, continuous education throughout, and receiving verbal consent for having their child participate in peer-to-peer interactions. Verbal communication was THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 22 PROGRAMS also utilized daily with other therapists. I had to keep these therapists informed of the timeline of the project, coordinate and communicate which clients would be appropriate for peer to peer interactions and communicate the types of interventions that would be implemented in sessions. Finally, verbal communication was frequently utilized when engaging with teachers or staff from centers that children would be seen at. The DCE student communicated the purpose of the programs to staff and in return, learned that some of the centers were implementing groups at their site too. The DCE student and staff were then able to communicate regarding which specific skills were being worked on at the centers, as well as which skills would be targeted in the group programs. The staff was responsive in that they wanted to work on some of the skills that would be targeted in the group programs so the clients would have experience leading up to the summer programs. Non-verbal communication was used on a day-to-day basis with every encounter I made. Active listening, proper eye contact, and appropriate attire are a few examples of non-verbal communication utilized when communicating with caregivers, health professionals, staff, and clients. Non-verbal communication was essential in building rapport with the individuals that I engaged with and felt this form of communication was improved throughout this experience. Leadership Leadership skills were utilized throughout the experience in multiple ways. A leadership skill that was significantly improved was time management. As a student focusing primarily on clinical skills, I needed to manage my time in order to stay on top of daily notes, evaluations, progress notes, preparing for sessions, as well as developing appropriate resources such as the needs assessment, the interventions, a staff survey, and a resource of goals and objectives. Time THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 23 PROGRAMS management skills were challenging to utilize at the beginning of the experience but grew a lot by the end as the day-to-day tasks were able to be completed earlier in the day. Leadership skills were also utilized when leading small group interventions. When implementing interventions, the other therapists would let me lead and facilitate assistance to their child when necessary. I was required to exhibit flexible thinking and adapt when needed throughout implementation. Time management skills were also required and utilized in that some interventions required more time than originally expected. I had to adapt and provide more assistance in order to achieve task completion and have the participants feel successful. Advocacy Advocacy skills were utilized in the implementation phase when actual interventions were implemented among children. I advocated for each child when implementing the group interventions. The children were often shy and initially hesitant to engage socially with peers. I focused on advocating for the child by building their self-esteem, demonstrating what was expected, and providing praise afterward. This method of advocacy was successful in that social interaction and functional communication was achieved in all sessions as well as the children became more engaged once they fully understood what was expected of them. Another area in which advocacy skills were utilized was in family education following therapy sessions. Initially, most parents were surprised their child performed socially and engaged in activities as well as they did when I reported positive progress in those areas. I advocated for the children and made families aware of their childs capabilities and skills. I also advocated for the childs progress made thus far compared to the progress that still needs to be made. Families typically see a child on a day-to-day basis whereas I saw the child on a weekly THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 24 PROGRAMS basis, so highlighting improved skills from week to week really seemed to make a difference to families in their outlook on their child. Overall, this experience provided several opportunities for growth, advocacy, improved independence, confidence, skill sets, and improved communication. I was able to improve in clinical skills in individual and in small group sessions. All of these skills that were utilized and improved throughout this experience will be beneficial in future opportunities of developing and implementing group interventions in my work as an occupational therapist. References THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 25 PROGRAMS American Occupational Therapy Association. (2018). Critically appraised topic: Evidence for group interventions for community-dwelling older adults. https://www.aota.org/Practice/Productive-Aging/Evidence-based/CAT-PA-HealthGroup-Interventions.aspx American Occupational Therapy Association. (2019). Occupational Therapys role in acute care. https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/RDP/F acts/Acute-Care.pdf Beck, S. J., Hanson, C. A., Puffenberger, S. S., Benninger, K. L., & Benninger, W. B. (2010). A controlled trial of working memory training for children and adolescents with ADHD. Journal of Clinical Child & Adolescent Psychology, 39(6), 825836. doi: 10.1080/15374416.2010.517162 Case-Smith, J., & OBrien, J.C. (2015). Occupational therapy for children and adolescents. (7 th ed.) St. Louis, MO: Elsevier Mosby. Charney, L., Bartello, F., Soulsby, E., Waltman, D., McLaughlin, E., Salak, A., & Jorda, J. (2017). Effectiveness of sensory and social group interventions to improve the participation of children with Autism Spectrum Disorder via Goal Attainment Scaling. Retrieved from https://ajot.aota.org/article.aspx?articleid=2636439&resultClick=3 Cole, M. B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK. Diamond, A., & Lee, K. (2011). Interventions shown to aid executive function development in children 4 to 12 Years Old. Science, 333(6045), 959964. doi: 10.1126/science.1204529 THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 26 PROGRAMS Dikla Gol, & Tal Jarus. (2005). Effect of a social skills training group on everyday activities of children with attention-deficithyperactivity disorder. Developmental Medicine & Child Neurology, 47(8), 539545. doi: 10.1017/S0012162205001052 Elksnin, L. K., & Elksnin, N. (1998). Teaching social skills to students with learning and behavior... (Cover story). Intervention in School & Clinic, 33(3), 131. doi: 10.1177/105345129803300301 Humphries, T., Wright, M., Mcdougall, B., & Vertes, J. (2002). The efficacy of sensory integration therapy for children with learning disability. Physical & Occupational Therapy In Pediatrics, 10(3), 1-17. doi:10.1300/j006v10n03_01 Karim, A. E., & Mohammed, A. H. (2015). Effectiveness of sensory integration program in motor skills in children with autism. Egyptian Journal of Medical Human Genetics, 16(4), 375- 380. doi:10.1016/j.ejmhg.2014.12.008 May-Benson, T. A., & Koomar, J. A. (2010). Systematic review of the research evidence examining the effectiveness of interventions using a sensory integrative approach for children. American Journal of Occupational Therapy, 64(3), 403-414. doi:10.5014/ajot.2010.09071 Miller, L. J., Coll, J. R., & Schoen, S. A. (2007). A randomized controlled pilot study of the effectiveness of occupational therapy for children with sensory modulation disorder. American Journal of Occupational Therapy, 61(2), 228-238. doi:10.5014/ajot.61.2.22 More, Dottie. (2015). The role of occupational therapy with children and youth. Retrieved from https://www.aota.org//media/Corporate/Files/AboutOT/Professionals/WhatIsOT/CY/FactSheets/Children%20and%20Youth%20fact%20sheet.pdf THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 27 PROGRAMS O'Connor, C., Lambe, S., Leeson, S. and Henry, A. (2019). Facilitating childrens sensorimotor development in DEIS schools. Dcu.ie. Retrieved from https://www.dcu.ie/sites/default/files/edc/pdf/sensorimotor_briefing_paper_educatio naldisadvantagecentredcu2016_1.pdf Schaaf, R., Benevides, T., Mailloux, Z., Faller, P., Hunt, J., Hooydonk, E., Kelly, D. (2014). An intervention for sensory difficulties in children with autism: A randomized trial. Journal of Autism & Developmental Disorders, 44(7), 14931506. doi: 10.1007/s10803013-1983-8 Shemy, S., & Mohamed, N. (2017). Effect of sensory integration on motor performance and balance in children with Developmental Coordination Disorder: A randomized controlled trial. International Journal of Therapies and Rehabilitation Research, 6(1), 1. doi:10.5455/ijtrr.000000213 Tarver, P. (2018). Sensory Integration: Building Blocks | SpecialNeeds.com. [online] Specialneeds.com. Retrieved from http://www.specialneeds.com/children-andparents/general-special-needs/sensory- integration-building-blocks Understood Team (2013). E-Book: Executive function 101. Retrieved from https://www.understood.org/en/learning-attention-issues/child-learningdisabilities/executive-functioning-issues/ebook-executive-function-101 Wan Yunus, F., Liu, K., Bissett, M., & Penkala, S. (2015). Sensory-based intervention for children with behavioral problems: A systematic review. Journal of Autism & Developmental Disorders, 45(11), 35653579. doi: 10.1007/s10803-015-2503-9 Wilkes-Gillan, S., Bundy, A., Cordier, R., Lincoln, M., & Chen, Y. (2016). A randomised controlled trial of a play-based Intervention to Improve the social play skills of children THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 28 PROGRAMS with attention deficit hyperactivity disorder (ADHD). Plos One, 11(8). doi:10.1371/journal.pone.0160558 Williams, M. S., & Shellenberger, S. (1996). An introduction to "How does your engine run?": The alert program for self-regulation. Albuquerque, NM: TherapyWorks. THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 29 PROGRAMS Appendix A Sensorimotor Group Questionnaire 1. 2. 3. 4. 5. 6. 7. 8. 9. My child is _________ years old 9 Respondents: 3-5 years old My child has participated in a summer group program before (circle one) a. Yes- If Yes, Where?______________________________________ b. No 0 respondents: (0%) 9 respondents (100%) The occupational therapist is currently working on which of the following skills with my child: (circle all that apply) a. Sensory dysregulation 8 respondents (89%) b. Sequencing 3 respondents (33%) c. Bilateral coordination 6 respondents (67%) d. Motor planning 7 respondents (78%) e. Fine motor skills 5 respondents (56%) f. Handwriting skills 3 respondents (33%) g. Emotional regulation 6 respondents (67%) h. Other _________________________________________________ (please list) I feel group interventions focusing on the above checked skills would be beneficial to my child: (circle one) a. Strongly agree 5 respondents (56%) b. Agree 3 respondents (33%) c. Neither agree nor disagree 1 respondent (11%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel fully educated on the skills my child is working on in therapy: (circle one) a. Strongly agree 4 respondents (44%) b. Agree 5 respondents (56%) c. Neither agree nor disagree 0 respondents (0%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel a group therapy program with children in the same age range working on the same skills as my child would be beneficial a. Strongly agree 5 respondents (56%) b. Agree 3 respondents (33%) c. Neither agree nor disagree 1 respondent (11%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel that education on the type of activities that will be implemented in the group program would make me more likely to sign up my child for the group program a. Strongly agree 4 respondents (44%) b. Agree 5 respondents (56%) c. Neither agree nor disagree 0 respondents (0%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel that education on the goals of the group program would be beneficial a. Strongly agree 4 respondents (44%) b. Agree 4 respondents (44%) c. Neither agree nor disagree 1 respondent (11%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) How often does your child participate in group settings? When? a. Always 3 respondents (33%) THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 30 PROGRAMS b. Usually 4 respondents (44%) c. Sometimes 1 respondent (11%) d. Rarely 1 respondent (11%) e. Never 0 respondents (0%) f. __________________________________________________________________(please specify) 10. I feel my child would benefit from the social skills aspect with a group program a. Strongly agree 5 respondents (56%) b. Agree 3 respondents (33%) c. Neither agree nor disagree 1 respondent (11%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) 11. My child plans to participate in the group therapy program this summer if the time allows a. Yes 4 respondents (44%) b. No 0 respondents (0%) c. Maybe 5 respondents (56%) 12. I would prefer: a. 1x a week for eight weeks b. Monday-Thursday for two hours each for one week during the summer a. 5 respondents (56%) b. 4 respondents (44%) THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 31 PROGRAMS Appendix B: Executive Functioning Group Questionnaire 1. 2. 3. 4. 5. 6. 7. My child is __________ years old 15 respondents: 7-12 years old My child has participated in a summer group program before (circle one) a. Yes-If Yes, Where?______________________________________ b. No a. 6 respondents : (40%) b. 9 respondents (60%) The occupational therapist is currently working on which of the following skills with my child: (circle all that apply) a. Sensory modulation 6 respondents (40%) b. Visual/working memory 7 respondents (47%) c. Sequencing 4 respondents (27%) d. Task monitoring 11 respondents (73% e. Task initiation 13 respondents (87%) f. Task completion 13 respondents (87%) g. Multi-step tasks 13 respondents (87%) h. Strengthening 9 respondents (60%) i. Fine motor skills 11 respondents (73%) j. Emotional regulation 10 respondents (67%) k. Motor Planning 6 respondents (40%) l. Other ___________________________________________________(please list) I feel group interventions focusing on the above checked skills would be beneficial to my child: (circle one) a. Strongly agree 6 respondents (40%) b. Agree 6 respondents (40%) c. Neither agree nor disagree 3 respondents (20%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel fully educated on the skills my child is working on in occupational therapy: (circle one) a. Strongly agree 4 respondents (27%) b. Agree 8 respondents (53%) c. Neither agree nor disagree 3 respondents (20%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel a group therapy program with children in the same age range working on the same skills as my child would be beneficial a. Strongly agree 5 respondents (33%) b. Agree 8 respondents (53%) c. Neither agree nor disagree 2 respondents (13%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) I feel that education on the type of activities that will be implemented in the group program would make me more likely to sign up my child for the group program a. Strongly agree 4 respondents (27% b. Agree 10 respondents (67%) c. Neither agree nor disagree 1 respondent (.07%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 32 PROGRAMS 8. I feel that education on the goals of the group program would be beneficial a. Strongly agree 5 respondents (33%) b. Agree 9 respondents (60%) c. Neither agree nor disagree 1 respondent (.07%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) 9. How often does your child participate in group settings? When? a. Always 5 respondents (33%) b. Usually 7 respondents (47%) c. Sometimes 2 respondents (13%) d. Rarely 1 respondent (.07%) e. Never 0 respondents (0%) f. __________________________________________________________________(please specify) 10. I feel my child would benefit from the social skills aspect with a group program a. Strongly agree 6 respondents (40%) b. Agree 7 respondents (47%) c. Neither agree nor disagree 2 respondents (13%) d. Disagree 0 respondents (0%) e. Strongly disagree 0 respondents (0%) 11. My child plans to participate in the group therapy program this summer if the time allows a. Yes 5 respondents (33%) b. No 1 respondent (.07%) c. Maybe 9 respondents (60%) 12. I would prefer: a. One time a week for eight weeks b. Monday-Thursday for two hours each for one week in the summer a. 9 respondents (60%) b. 6 respondents (40%) THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 33 PROGRAMS Appendix C: Staff Survey Please answer the following questions based on 1: strongly disagree, 2: disagree, 3: neutral, 4: agree, and 5: strongly agree 1. I feel comfortable implementing the group program based on education provided and experience in the implementation phase: a. b. c. d. Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree 3 respondents (75%) 1 respondent (25%) Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree 4 respondents (100%) Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree 3 respondents (75%) 1 respondent (25%) Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree 4 respondents (100%) Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree 4 respondents (100%) e. 2. I feel that the program is clearly outlined and easy to follow with the timeline and types of activities: a. b. c. d. e. 3. I feel I have received enough education from the DCE student in order to educate families about the group programs: a. b. c. d. e. 4. I feel the activities are able to be graded in order to meet a variety of skill sets in the group: a. b. c. d. e. 5. I fully understand the purpose of the program as well as the goals and objectives: a. b. c. d. e. 6. I feel I could fully implement interventions and have adequate space and resources to complete all activities: THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 34 PROGRAMS a. b. c. d. e. Strongly agree Agree Neither agree nor disagree Disagree Strongly disagree 3 respondents (75%) 1 respondent (25%) Appendix D: Goals and Objectives Resource WHAT TO EXPECT: Your child will be engaging in fun activities while addressing social skills, sensory regulation, motor planning and coordination, fine motor skills, and executive functioning skills! These skills will be addressed in exciting games, obstacle courses, multi-sensory crafts, and teamwork activities. Below is a list of goals and objectives, if you have any further questions, please ask your childs therapist! Hope to see you then! Goal 1: Participant will engage in functional communication skills in group activities Objective 1: Participant demonstrate ability to introduce themselves to all group members Objective 2: Participant will demonstrate ability to share 3 facts about themselves Objective 3: Participant will demonstrate ability to share short story with group members Objective 4: Participant will demonstrate ability to communicate appropriate turn taking during activities Objective 5: Participant will demonstrate ability to give or explain simple directions during games and activities Goal 2: Participant will engage in motor coordination and planning in group activities Objective 1: Participant will demonstrate ability to work with group members in order to complete steps in activities Objective 2: Participant will demonstrate ability to complete motor planning or coordination movements independently or with assist from group members or therapist Objective 3: Participant will demonstrate ability to sequence through 4-5 step motor planning actions Goal 3: Participant will engage in executive functioning skills in group activities Objective 1: Participant will demonstrate ability to setup, complete, or change steps of an obstacle course Objective 2: Participant will demonstrate ability to initiate steps to activities Objective 3: Participant will demonstrate ability to utilize working memory during activities THE DEVELOPMENT OF SENSORIMOTOR AND EXECUTIVE FUNCTIONIG GROUP 35 PROGRAMS Objective 4: Participant will demonstrate ability to organize materials to create activities or crafts  ...

... Sensory Programming as Part of an Interdisciplinary Approach to Dementia Care in a Residential VA Setting Rachel M. Gramman May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Jennifer Fogo, PhD, OTR Running head: SENSORY PROGRAMMING AND DEMENTIA CARE 1 A Capstone Project Entitled Sensory Programming as Part of an Interdisciplinary Approach to Dementia Care in a Residential VA Setting Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Rachel M. Gramman Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date SENSORY PROGRAMMING AND DEMENTIA CARE 2 Abstract Individuals with dementia often experience sensory and occupational deprivation in long-term care facilities, and there is a need to provide opportunities for increased engagement. The purpose of this doctoral capstone experience within the VA healthcare system was to create and implement both group-based and individualized sensory programming for veterans with dementia and to educate staff members on the best use of sensory materials and techniques to improve veteran engagement. The occupational therapy student developed structured and unstructured, themed group protocols and coordinated with recreational therapy staff to plan individual sessions based on the veterans reported leisure interests. Two veterans with dementia, one veteran with Alzheimers disease, one veteran with Parkinsons-related dementia, and one veteran with vascular dementia were offered sensory sessions between two and five times per week for 15-30 minutes. Veterans were more likely to be very engaged when the session was client-centered and focused on a topic meaningful to them. Staff received education regarding theoretical background, session planning and documentation, and implementing sensory interventions to increase likelihood of continued veteran engagement and sensory stimulation following the students departure. SENSORY PROGRAMMING AND DEMENTIA CARE 3 Sensory Programming as Part of an Interdisciplinary Approach to Dementia Care in a Residential VA Setting As of 2017, 50 million people worldwide were living with dementia, and with the aging population, this number is projected to increase and impact an estimated 82 million people by 2030 (World Health Organization [WHO], 2017). Healthcare providers, including occupational therapists, will continue to encounter individuals with dementia now and in the coming years. In the United States alone, over half of patients residing in long-term care facilities between 20132014 had the diagnosis (Harris-Kojetin et al., 2016). Within the Diagnostic and Statistical Manual, 5th Edition (DSM-5), dementia is classified as a neurocognitive disorder, or NCD (Simpson, 2014). Though there are multiple etiologies including Alzheimers disease, Vascular dementia, Dementia with Lewy bodies (DLB), and Parkinsons disease, to name a few, memory loss and decreases in functioning and independent completion of self-care activities are shared characteristics that individuals with dementia will experience, with symptoms worsening as the condition progresses (Alzheimers Association, 2018; Atchison & Dirette, 2012; Centers for Disease Control and Prevention [CDC], 2018). Additional symptoms may include sleep disturbances, gait impairments, language difficulties, and behavioral symptoms (Alzheimers Association, 2018; Atchison & Dirette, 2012; Choi, Budhathoki, & Gitlin, 2017). Behavioral symptoms such as agitation, aggression, and rejection of care may appear at any stage of dementia and can co-occur in multiple combinations, with some becoming more prevalent than others based on the severity of the dementia (Choi et al., 2017). Such symptoms can be distressing for caregivers and often contribute to the decision to seek placement in a longterm care facility (Atchison & Dirette, 2012; Choi et al., 2017). However, when exploring the SENSORY PROGRAMMING AND DEMENTIA CARE 4 agitated behaviors of patients with dementia across multiple nursing home settings, researchers found that patients experienced an average of three unmet needs such as boredom/sensory deprivation, loneliness, and need for meaningful activity (Cohen-Mansfield, Dakheel-Ali, Marx, Thein, & Regier, 2015). Researchers concluded patients behaviors could be exacerbated, in part, from not having their needs met in this setting (Cohen-Mansfield, Dakheel-Ali et al., 2015). The researchers noted a trend among patients experiencing boredom/sensory deprivation; these patients tended to display physical nonaggressive behaviors more frequently (CohenMansfield, Dakheel-Ali et al., 2015, p. 61). The growing prevalence of dementia diagnoses and the large number of patients in long-term care who are experiencing sensory deprivation support the need to provide sensory programming to better meet these patients needs and increase engagement. Literature Review The use of sensory interventions for dementia care is not a novel idea, but because there is not a clear definition of what constitutes a sensory intervention, one could compile an extensive list of activities. After surveying more than 400 residential aged care services in Australia, researchers received responses describing the use of over 40 types of multi-sensory interventions (Bauer, Rayner, Koch, & Chenco, 2012). To better understand the current uses of sensory stimulation and to develop an evidence-based sensory program, the efficacy of interventions commonly utilized in dementia care were examined. Music In a study focused on the use of nonpharmacological methods to address behavioral symptoms related to dementia, music was among the most frequently used interventions (CohenMansfield, Marx, Dakheel-Ali, & Thein, 2015). Additional studies have highlighted the ability to SENSORY PROGRAMMING AND DEMENTIA CARE 5 create personalized sessions for patients when using music (Scales, Zimmerman, & Miller, 2018). In two studies, researchers examined the effects of providing individualized, structured, 30-minute music sessions twice weekly through use of a computer with individuals with severe dementia and found promising results (Maseda et al., 2018; Snchez Fernndez et al., 2016). For short-term impact of music interventions, Maseda et al. (2018) found that participants were more relaxed during the session, they demonstrated increased positive mood and attention, and they were more social immediately following a session as compared to before. Regarding longer-term impact, Snchez Fernndez et al. (2016) found that participants displayed less anxiety, fewer signs of depressed mood, and fewer physically nonaggressive behaviors at a follow-up eight weeks after intervention with music had ceased. Though music was beneficial when used in residential settings with individuals with dementia, facility staff seeking to implement music therapy should be aware that this intervention was also rated as requiring moderate investment, meaning that some training should be provided to the individual leading the session, and there is an associated cost of materials (Scales et al., 2018). Massage A review of the literature produced mixed results regarding the use of massage with individuals with dementia. After receiving a foot massage intervention, individuals with moderate to severe dementia showed less physiological signs of stress; however, a control group of participants who experienced no massage but rather had a person sit quietly in the room with them showed similar results (Moyle et al., 2014). From these findings, researchers were unable to conclude that the massage itself was effective; simply interacting with another individual may have created the stress reduction for participants (Moyle et al., 2014). Looking specifically at applying massage to help reduce behavioral symptoms of dementia, hand massage has been rated SENSORY PROGRAMMING AND DEMENTIA CARE 6 among the most effective interventions for reducing agitation, but aromatherapy massage of patients necks, shoulders, and arms produced short-term reduction in agitation only within the first few weeks of implementation, with no significant effect over time (Cohen-Mansfield, Marx et al., 2015; Yang, Wang, & Wang, 2016). However, the aromatherapy massage was useful for reducing depressive symptoms in participants (Yang et al., 2016). Due to this variability of how massage has been implemented, Scales et al. (2018) suggested that protocols be created prior to use. Robotic Pets Robotic pets have been utilized as part of a group and as an individual intervention. Following individual sessions with use of a robotic cat, caregivers of participants with dementia reported feeling that it was comforting for participants and provided a way to start a conversation (Gustafsson, Svanberg, & Mllersdorf, 2015). Additionally, two studies examined the use of a robotic seal in a group intervention and found that participants demonstrated increased communication and interaction skills following the sessions, and staff reported social benefits as well (Robinson, Broadbent, & MacDonald, 2016; Sung, Chang, Chin, & Lee, 2015). Though neither of these two studies included participants with dementia, participants did possess characteristics such as cognitive impairment that are similar to dementia symptoms, and nearly 25% of staff members in one study reported feeling that the use of robotic pets would be useful with individuals with dementia (Robinson et al., 2016; Sung et al., 2015). Despite these studies that produced generally positive results, researchers have also reported high levels of participant refusal and disinterest associated with the use of robotic pets (Cohen-Mansfield, Marx et al., 2015; Robinson et al., 2016). This should be taken into consideration in the intervention planning process. SENSORY PROGRAMMING AND DEMENTIA CARE 7 Multisensory Stimulation Environment A multisensory stimulation environment (MSSE) is characterized by a space, such as a sensory garden or a dedicated room, with various types of stimuli meant to impact multiple senses at one time (Maseda et al., 2018; Scales et al., 2018). Perhaps the most commonly known interpretation of this intervention is the Snoezelen environment, which was created with elements such as fiberoptics, bubble tubes, and colored lighting (Berkheimer, Qian, & Malmstrom, 2017; Maseda et al., 2018). Following participation in a Snoezelen intervention, individuals with dementia demonstrated increases in mood, relaxation, and alertness as well as decreases in anxiety and behavioral symptoms of dementia such as wandering, restlessness, and agitation (Anderson, Bird, Macpherson, McDonough, & Davis, 2011; Bauer et al., 2015; Berkheimer et al., 2017; Maseda et al., 2018; Snchez Fernndez et al., 2016). However, when also considering the comparison interventions in these studies, researchers found that use of music, exercise, sessions in a garden, and attention provided by a caregiver produced similar results and were more cost-effective than the Snoezelen sessions (Anderson et al., 2011; Bauer et al., 2015; Berkheimer et al., 2017; Maseda et al., 2018; Snchez Fernndez et al., 2016). Additionally, need for caregiver training was suggested prior to implementation of MSSE (Collier & Jakob, 2017; Scales et al., 2018). Sensory Groups Among individuals with dementia, those with a perceived previous interest in group activities, lesser degree of cognitive impairment, and greater independence with completion of activities of daily living (ADLs) were more likely to attend group activity sessions and demonstrated a higher level of engagement and more positive moods throughout sessions (Cohen-Mansfield, 2017; Cohen-Mansfield, Marx et al., 2015). Activity groups have focused on SENSORY PROGRAMMING AND DEMENTIA CARE 8 various topics such as cooking, reading, and music, to name a few, but within the field of occupational therapy, Ross (1997) created a specific group model focused on the use of sensory stimuli with the goal of participants achieving a state of alert calmness following completion (p. 1). Following this group model, participants progress through five stages, and stimulation activities in each stage were designed to sequentially place increasing demand on the central nervous system (Ross, 1997). The first stage, orientation, is intended to welcome participants, explain the purpose of the group, and to awaken the senses through short bursts of stimulation (Ross, 1997). Stage two, focused on movement, is meant to continue facilitating and increasing the arousal that was achieved in the first stage (Ross, 1997). The movements may include activities like exercises and dancing that can be graded to meet the needs of the participants (Ross, 1997). Stages three and four, titled visual-motor perceptual activities and cognitive stimulation and function, respectively, have been used to promote sharing, reminiscing, and other strategies to stimulate more internal focus and bring calming (Ross, 1997). The group ends with a concluding stage that should give participants a feeling of accomplishment and satisfaction (Ross, 1997). While all stages should be implemented, researchers suggested that the group leader should rely on participants responses to the stimuli and level of engagement to know when it is appropriate to advance to a new stage, and themes have been used to bring similar stimuli together in a session (Cruz, Marques, Barbosa, Figueiredo, & Sousa, 2013; Ross, 1997). Guiding Theory Due to the large number of sensory interventions available and those that could be additionally created using everyday objects in the environment, it may be difficult to decide which intervention is appropriate for a particular patient. However, coupling concepts from the SENSORY PROGRAMMING AND DEMENTIA CARE Model of Human Occupation (MOHO; Kielhofner, 2002 as cited in Cole & Tufano, 2008) and the sensory integration (SI) frame of reference may guide occupational therapy practitioners in providing client-centered care to individuals with dementia. Central to the MOHO is the idea that each person is made up of three subsystems (Kielhofner, 2002 as cited in Cole & Tufano, 2008). The volitional subsystem refers to an individuals values, interests, and feelings of competence and how these aspects combine to determine what motivates a person to participate in occupations whereas the habituation subsystem refers to a persons roles and routines (Kielhofner, 2002 as cited in Cole & Tufano, 2008). The third subsystem is the mind-brain-body, or performance capacity, subsystem, which includes musculoskeletal, neurological, cardiopulmonary, and symbolic aspects of the person (Kielhofner, 2002 as cited in Cole & Tufano, 2008). The person, with all his or her subsystems, exists in an environment that offers input, opportunities, and barriers, and occupational performance then results from and is impacted by how the person functions within the environment (Kielhofner, 2002 as cited in Cole & Tufano, 2008). Because of its neurocognitive impact, dementia affects the performance capacity subsystem of the person and subsequently may negatively influence occupational performance. Since there is no cure for dementia, reversing the impact on the persons subsystem is not feasible, but theorists from the SI frame of reference have offered suggestions for altering sensory input from the environment, which may support occupational performance. Jean Ayers developed the theory of SI and originally applied it to children, but it has since been used with adults as well since sensory integration is relevant across the lifespan (Cole & Tufano, 2008). Central to the theory is that, across ages, individuals receive input from their environments and must successfully process the incoming information from the stimulus in order to produce an 9 SENSORY PROGRAMMING AND DEMENTIA CARE 10 adaptive response (Cole & Tufano, 2008). Each individual differs and has his or her own sensory profile, meaning that each individual prefers and needs a different type and intensity of input to generate an adaptive response (Cole & Tufano, 2008). Though the SI framework includes concepts of integration, processing, and modulation, the goal is most often sensory stimulation when applied with older adults (Cole & Tufano, 2008; Mytton & Haigh, 2016). Researchers have suggested that increased sensory stimulation may become more important for older adults due to age-related sensory loss; they may need more input to register a stimulus (Heyl & Wahl, 2012; Mytton & Haigh, 2016). In some cases, older adults with sensory loss began to rely more on cognitive strategies to continue functioning in their environments, but for individuals with dementia, their ability to rely on these cognitive strategies may be negatively impacted as well (Heyl & Wahl, 2012; Mytton & Haigh, 2016). For those with dementia, the environmental stimuli may become even more difficult to process, leading to sensory deprivation, a commonly unmet need for this population that can subsequently result in negative behaviors (Cohen-Mansfield, Dakheel-Ali et al., 2015). Mytton and Haigh (2016) reviewed several studies and found that, when this need was addressed, sensory stimulation was associated with increased occupational engagement and more positive mood states from patients with dementia. However, this is not to say that all of the aforementioned sensory stimulation interventions are appropriate for all individuals with dementia. The MOHO concept of volition must be considered throughout intervention planning in order to provide patients with a meaningful experience. Though individuals with dementia often become less forthcoming with verbalizing their interests as their condition progresses to later stages, observations of their behavioral responses to stimuli, including smiling, length of attention to a stimulus, and attitude when interacting with SENSORY PROGRAMMING AND DEMENTIA CARE 11 a stimulus, have been used to inform current interests and volition (Cohen-Mansfield, Marx, Thein, & Dakheel-Ali; 2010; Raber, Teitelman, Watts, & Kielhofner, 2010). However, staff caregivers may have a more difficult time inferring meaning from behaviors, and it is not uncommon for staff to have limited understanding of volition in patients with dementia (Raber & Stone, 2015; Raber et al., 2010). In one study, staff at an assisted-living facility demonstrated understanding of general preferences of patients, but staffs understanding of the patients volition was unidimensional and unchanging, despite the fact that patients interests had changed over time as a result of disease progression (Raber & Stone, 2015, pp. 13-14). Relying only on their knowledge of patients past interests led staff to suggest activities that were no longer as meaningful for the patients (Raber & Stone, 2015). Raber et al. (2010) have suggested that the patients loss of interest in a once-liked activity may be related to personal feelings of diminished capacity due to recognition that their abilities are changing. However, if a past activity of interest is modified to match the patients new ability level, this may support continued engagement (Raber et al., 2010). To summarize, individuals with dementia benefit from sensory stimulation, but this is not always readily available within their environments or care facilities. With education about sensory stimulation, caregivers, including staff, have demonstrated the potential to change their perspectives of patients with dementia and to increase their recognition of each patients needs (Lykkeslet, Gjengedal, Skrondal, & Storjord, 2014). The resulting purpose of this doctoral capstone experience (DCE) within the VA system was to create and implement both group-based and individualized sensory programming for veterans with dementia and to educate staff members on best use of sensory materials and techniques in an effort to improve veteran engagement. SENSORY PROGRAMMING AND DEMENTIA CARE 12 Needs Assessment A preliminary needs assessment began during completion of a level two occupational therapy fieldwork rotation in the Community Living Center (CLC) at the Cincinnati VA Medical Center (CVAMC) a few months prior to the DCE. Based on observations at the time, it appeared that it was sometimes difficult for staff to engage some of the veterans with cognitive limitations in available programs. Staff confirmed this and mentioned that they had had an interest in implementing sensory programming for these individuals for a while and had begun research on the topic, but limited time and resources had contributed to non-advancement of the idea. However, grant money was recently secured, which created an opportunity for implementation and culminated in the current DCE. Once on-site, a more formal needs assessment was conducted, as detailed below. Site Evaluation A representative from the CVAMC is active within the VAs Innovator Network, which has Spark, Seed, Spread opportunities (VHA Innovation Ecosystem, n.d.). Essentially, when a new idea is sparked at the national level, funding is provided for it to be piloted at a seed site (L. Riegler, personal communication, November 19, 2018). If successful, innovators at the seed site are then given money that they may use to spread the idea to other VA locations (L. Riegler, personal communication, November 19, 2018). In this way, the CVAMC was chosen as a spread site and received grant funding from another VA in order to implement sensory programming related to dementia care. Because the intent was to replicate the seed sites therapeutic design at the CVAMC, the DCE student assessed the feasibility of doing so. Location characteristics. Following a visit to the seed site, the DCE student completed a SWOT analysis to compare the two VA locations (Table 1). Whereas the seed site had a SENSORY PROGRAMMING AND DEMENTIA CARE 13 dedicated dementia unit, the CVAMC CLC did not. Rather, the CLC was comprised of three, 16bed units, and the beds were divided among veterans in need of short-term rehabilitation, longterm care, respite services, and hospice care (E. Higgins, personal communication, February 5, 2019; U.S. Department of Veterans Affairs, 2018). Veterans with dementia were integrated among the units, so there was not a shared living space in the CLC for veterans with dementia. Furthermore, the CLC lacked a dedicated sensory space in the facility, and unlike at the seed site where sensory programming was overseen by nursing, nursing staff shortages at the CVAMC CLC did not make this feasible. However, occupational therapy practitioners receive training in sensory integration, so programming could proceed at the CVAMC CLC under their guidance following completion of the DCE. Sensory needs. Considering the sensory elements, it became clear during the needs assessment that, because of the logistical differences, the CVAMC would need different sensory materials than those that were in use at the seed site. The innovator at the seed site wished to order the following items for the CLC: wall murals, robotic pets, aromatherapy supplies, miscellaneous sensory items and mobile cart, a Snoezelen cart, and a set of interactive dementia books (B. Abele, personal communication, January 2, 2019). However, research regarding evidence-based sensory interventions for individuals with dementia revealed little support for the use of aromatherapy for addressing behavioral symptoms of dementia and suggested that the Snoezelen cart was not the most cost-effective option (Anderson et al., 2011; Bauer et al., 2015; Livingston et al., 2014). Furthermore, after viewing a Snoezelen cart that was used on the mental health unit of the CVAMC, it was clear that the size of the cart would make it difficult to transport between patient rooms and would require more storage space than what was available in the CLC. Therefore, these items were removed from the list along with the wall murals, which SENSORY PROGRAMMING AND DEMENTIA CARE 14 did not have approval from the interior design staff at the CVAMC. Following the literature review and discussions with staff, the DCE student collaborated with the registered occupational therapist (OTR) and supervising certified therapeutic recreation specialist (CTRS) to create a new wish list of sensory items. The student also conducted an inventory of supplies currently available in the CLC to ensure that there were no duplicate requests (Table 2). Personal Communication with Site Mentors Both an OTR and a CTRS acted as site mentors for the DCE. A second CTRS and a certified occupational therapy assistant (COTA) also provided significant input throughout the needs assessment, but final determinations for programming were made by the OTR, supervising CTRS, and the occupational therapy student (OTS). Program logistics. Staffing. It was determined that the sensory program would include both group and individualized sessions, and the implementation responsibilities would be shared among the two occupational therapy (OT) practitioners and three recreation therapy (RT) staff in the CLC. Group sessions would be led collaboratively, with RT staff being responsible for implementing individual sessions and OT staff acting in a consultative role to provide intervention suggestions. The RT supervisor reported that all department staff already possessed knowledge of basic sensory integration concepts, and the same was true for the OT practitioners, so the DCE student would therefore provide staff education focused mainly on the theoretical background of the DCE, research related to the topic, how to administer chosen assessments, session planning and implementation, and documentation methods. Desired outcome. Although a review of the literature revealed that researchers have frequently used sensory interventions with individuals with dementia to address behavioral SENSORY PROGRAMMING AND DEMENTIA CARE 15 symptoms, such as agitation and aggression, and there were multiple scales available to measure these outcomes, the CTRS mentor reported feeling that this symptom was not applicable to all members of the veteran population of interest (Anderson et al., 2011; Berkheimer et al., 2017; Cohen-Mansfield, 1991; Rosen et al., 1994; Snchez Fernndez et al., 2016; Yang et al., 2016). She requested that the DCE student implement a more inclusive outcome measure (E. Higgins, personal communication, January 8, 2019). After further search of the literature, participants attendance, attitude, and level of participation appeared as alternative outcomes that had been studied in relation to the target population (Cohen-Mansfield, 2017). The OTS and mentors agreed that these were more applicable to the veterans with dementia residing in the CLC, so veteran engagement was chosen as a generalized outcome that encompassed multiple other outcomes noted in the literature, including agitation and interaction skills. Frequency of sessions. For sustainability purposes, the OTR mentor requested that the sensory group occur only once per week to still accommodate the normal OT rehabilitation caseload (M. Reichle, personal communication, January 8, 2019). Even though this would have met the minimum frequency for implementing groups based on the five-stage model, Ross (1997) encouraged additional group sessions per week. To achieve this, group leadership was expanded to include RT staff, and the intended beginning frequency was increased to two 30minute group sessions per week for two groups of veterans with dementia. Additionally, staff decided to offer 15-minute individual sessions to veterans in the afternoons on a case-by-case basis, which was an appropriate amount of time for a 1:1 multisensory intervention (Anderson et al., 2011). Identification of key stakeholders. The chief of nursing, an infection control point of contact, supervisors and the manager within the rehabilitation care line, and the representative SENSORY PROGRAMMING AND DEMENTIA CARE 16 from the innovation network were identified as additional key stakeholders. Ongoing communication was initiated with these individuals to determine which items could be purchased through the related grant, how these items would need to be cleaned between patient use, potential involvement of nursing staff in the sensory programming, and expectations for discontinuation of the DCE to support sustainability. Future planning. Even though the DCE site did not have a dedicated dementia unit, the site mentors reported that there were plans for the addition of one in the coming years. The mentors requested that the DCE student compile a list of evidence-based suggestions for the interior design of the space. If a dedicated space is built, this would also increase the number of veterans with dementia who are served at the CVAMC, so the need for more specific information about dementia staging and models was also discussed. The OTS offered to compile a resource binder for the site mentors and added a section on the goal attainment scale (Appendix A) to measure the evaluation of the resources. Veteran Assessments Screening. Chart reviews were completed to identify veterans with dementia who were receiving LTC. Seven veterans were initially identified, but due to the mentors desire to initially pilot the sensory programming with only a small number of participants, this list was reduced to five veterans based on input from RT staff regarding which veterans would be most appropriate. Cohen-Mansfield (2017) found that therapeutic recreation staffs perceptions of whether an individual enjoyed participating in groups was correlated with that individuals later level of engagement. In the CVAMC CLC, RT staff members were most familiar with the participation history of the identified veterans, so their recommendations were accepted, thereby determining the final program sample of five veterans which included two veterans with dementia, one SENSORY PROGRAMMING AND DEMENTIA CARE 17 veteran with Alzheimers disease, one veteran with Parkinsons-related dementia, and one veteran with vascular dementia. The two veterans who were excluded from the initial sample had comorbid mental health diagnoses that resulted in maladaptive behaviors, which the OTS agreed may skew data collection as these behaviors could be mistaken for dementia-related agitation. Evaluation. Pool Activity Level Instrument. Because the sensory programming was to be a collaborative effort between OT and RT staff, an assessment was needed that would allow staff from each discipline to provide input and produce an interpretation of results that was of value for both OT and RT staff. The Pool Activity Level Instrument (PAL; Pool, 2012) allowed for this. Furthermore, this tool was found to be valid and reliable when used with a population of older adults with dementia (Wenborn et al., 2008). Though the PAL includes a Personal History Profile, which is a list of interview questions to elicit information regarding what is meaningful to the client, the current RT evaluation contained much of the same information, so the existing evaluation was used to gather information pertaining to the veterans activity interests (Pool, 2012). This was followed by completion of the PAL Checklist to determine the cognitive ability level of the individual; the categories of cognitive ability include planned, exploratory, sensory, and reflex, with the latter categories corresponding to greater cognitive impairment (Pool, 2012). The checklist contains nine items that each focus on one activity and provides four descriptors of how a person may complete the activity (Pool, 2012). Staff simply checked which of the four statements best described the veteran, and the category with the most checks indicated the veterans cognitive ability level (Pool, 2012). The PAL Activity Profile and Individual Action Plan provided RT SENSORY PROGRAMMING AND DEMENTIA CARE 18 with leisure activity suggestions for the veteran and informed OT practitioners and nursing staff how to better set up for ADL sessions to best match the veterans ability (Pool, 2012). Sensory Integration Inventory Revised. For those veterans scoring at the sensory or reflex levels of ability following assessment with the PAL (Pool, 2012), additional assessment was indicated to determine sensory preferences and inform focus of individualized sensory sessions. Considering the populations cognitive limitations, it was determined that a tool based on caregiver report would be more beneficial than one requiring the veterans to self-report. The Sensory Integration Inventory Revised (SIIR) allowed for this and provided staff an opportunity to comment on several items pertaining to the following categories: tactile, vestibular, proprioception, and general reactions (Reisman & Hanschu, 1992). After completing the SIIR with a veteran, the OTS reviewed item descriptions provided by Reisman and Hanschu (1992) to infer which types of sensory interventions would be most appropriate for the veteran and then communicated this to RT staff. Results. The OTS completed all veteran evaluations with the PAL (Pool, 2012) and SIIR (Reisman & Hanschu, 1992) during week eight of the DCE rotation. Scores based on staff report revealed that one veteran was functioning at the exploratory activity level of ability, meaning he would likely benefit from occasional cueing, especially when beginning a new activity or being in an unfamiliar environment (Pool, 2012). The remaining four veterans scored at the sensory activity level of ability, which indicated that consistent cueing and simplified instructions should be provided to increase the veterans success with occupational engagement (Pool, 2012). For these four veterans, the SIIR was also completed to identify sensory preferences. Two veterans frequently avoided vestibular and certain tactile input whereas one veteran was reported to SENSORY PROGRAMMING AND DEMENTIA CARE 19 frequently seek vestibular and proprioceptive input. The fourth veteran showed no preferences or aversions. Outcome measure. The DCE student utilized staff input and a combination of items from the Cohen-Mansfield Agitation Inventory (CMAI; Cohen-Mansfield, 1991), the Pittsburgh Agitation Scale (Rosen et al., 1994), the Assessment of Communication and Interaction Skills (ACIS; Forsyth, Lai, & Kielhofner, 1999), and Anderson and colleagues (2011) description of behavioral observations that indicated engagement to create a 4-point Likert scale for measuring veteran engagement (Appendix B). The DCE student reviewed the veterans charts for the month of January, but documentation from staff of various disciplines was not detailed enough to obtain sufficient information about the veterans baseline levels of engagement during social interactions. Therefore, the DCE student proceeded with baseline data collection using the created outcome measure and observations of the veterans daily routines and interactions during February. The measure was also used again following implementation to measure change in veteran engagement. Comparing Needs Assessments: LTC Versus Alternative Settings The needs assessment described above was completed in the long-term care setting with veterans with dementia. However, if the same population was encountered in a different setting, the needs assessment would likely require some degree of modification. Acute care. Similar to how the needs assessment was conducted for the DCE, the needs assessment in the acute care setting would still begin with staff interviews or surveys regarding the current care for patients with dementia. However, rather than focusing only on therapists, the interviews would be extended to nursing staff. Nursing staff have frequent interactions with SENSORY PROGRAMMING AND DEMENTIA CARE 20 patients in this setting, yet there is often little to no training provided regarding how to care for individuals with dementia; this may be due, in part, to the fact that the dementia diagnosis is likely not the primary reason for hospitalization (Butcher, 2018; Timmons et al., 2016). Starting with a survey to ascertain staffs concerns about caring for this patient population; what education, if any, they have received; and how confident they feel in caring for this patient population may be beneficial as part of a needs assessment. When considering patient outcomes and how to incorporate sensory interventions in acute care, agitation was a frequently cited issue for these patients (Butcher, 2018), so rather than developing an engagement scale as was done for the DCE, an existing agitation scale such as the CMAI (Cohen-Mansfield, 1991) or Pittsburgh Agitation Scale (Rosen et al., 1994) could serve as a more appropriate outcome. Also, whereas the PAL (Pool, 2012) was used during the DCE to determine appropriate activities for patients at the DCE site, such a tool would not be needed in the acute care setting; from an occupational therapy and nursing standpoint, ADLs would be the main focus rather than leisure activities. A sensory assessment, such as the SIIR (Reisman & Hanschu, 1992) could still be used, but the resulting sensory preferences would inform ADL sessions. For instance, it may be important for nursing staff to keep lights dim and the television low to prevent agitating a patient, or staff may try using a cool washcloth or drink in the morning to stimulate the patient and increase alertness. In this way, sensory programming could still be implemented in relation to dementia care. Adult day center. Staff at adult day centers offer a variety of services for individuals who need supervision or care throughout the day, and these include older adults with dementia (Eldercare Locator, n.d.; Dabelko-Schoeny et al., 2018). Because this setting is communitybased, it follows less from the medical model, and staff are able to offer more activities to SENSORY PROGRAMMING AND DEMENTIA CARE 21 individuals such as those offered in the CVAMC CLC. For this reason, the needs assessment at an adult day center could similarly begin with staff interviews about what types of programs are already offered and what new programs are desired. The information could be compiled in a SWOT analysis, and an inventory of current sensory materials could be created. Because the goal of increasing sensory programming would remain, individuals with dementia at an adult day center could still be evaluated using the PAL (Pool, 2012) to determine their cognitive ability level and the leisure activities that would be most appropriate for them. However, rather than using the SIIR to determine sensory preferences, the Carers Checklist (The Mental Health Foundation, 1998) would be more appropriate. Use of the Carers Checklist (The Mental Health Foundation, 1998) would allow for adult day center staff to provide input, but more importantly, it would allow for family caregivers to rate both behaviors of the person with dementia and how stressful this is for the caregiver. In interviews with family caregivers, Edwards (2015) found that caregiver burden was a factor that repeatedly emerged, but caregivers were often unaware of the assistance that could be provided by occupational therapy programming. The final part of the needs assessment in this setting would be to review any necessary documentation standards and determine an appropriate way of measuring outcomes. Implementation Sensory Sessions Sensory sessions began during week nine of the DCE rotation. All sessions were conducted in a small room with lights dimmed to provide a calming atmosphere. To decrease distractions, only the sensory items to be used during a given session were set out. At the beginning of each session, veterans were greeted by their preferred name, and the OTS explained the purpose of the session. This was necessary due to the veterans dementia and limited recall SENSORY PROGRAMMING AND DEMENTIA CARE 22 from previous sessions, and it also helped to combat the anxiousness that some veterans displayed when they did not understand why they were being taken off of their units. The veterans were each initially scheduled to attend two, 30-minute group sessions per week, but veterans often missed sessions due to illness, hospital appointments, or still being in bed at the time of attempt. In response to this, staff and the OTS decided to offer the sensory group to all five veterans five days per week beginning in week 11 in order to increase the likelihood that veterans would be able to attend and benefit from at least two sessions per week. Depending on the needs and number of veterans in attendance, session formats varied among three types. The first format followed the Ross (1997) five-stage group model. A sample group protocol following this format may be viewed in Appendix C. This format was utilized the least due to poor receptivity from the veterans. Prior to implementation of the sensory group, many of the veterans with dementia were accustomed to spending the majority of their time alone in their rooms, and they became noticeably anxious when brought into a group setting and asked to interact with other veterans and staff in an unfamiliar environment. Frequent transitions between activities, which is indicated by the Ross (1997) model, was also particularly difficult for one veteran who tended to benefit more from consistency and setting his own pace. To lessen the social and activity demands of group sessions, the DCE student developed and implemented a second group format where staff offered multiple activities related to a common theme, but veterans were not specifically asked to collaborate. A sample group protocol following this format may be viewed in Appendix D. Oftentimes, two veterans attended sensory group at the same time but did not interact with one another; rather they did their own activities in a manner that resembled parallel play. To ensure that veterans were still engaged in social SENSORY PROGRAMMING AND DEMENTIA CARE 23 participation with staff, another OT or an RT staff member were always present in addition to the OTS when using this format so that enough staff were available to attend to each veteran. In the third format, which was used most frequently and was the least structured, the DCE student offered individual sensory sessions to the veterans either in their rooms or in a dedicated space off of the unit. These sessions were typically shorter than the group sensory sessions and averaged 15 minutes in length. One benefit of this format was that the OTS could allow the veterans to have increased control. For example, the veterans were presented with multiple activities but could choose those they found most interesting or meaningful, and the veterans could switch activities as often as they desired. This approach followed the concepts related to use of Snoezelen multisensory environments where the therapist enables but does not direct the patient (Haegele & Porretta, 2014). Regardless of session format utilized, the DCE student tried to ensure that intervention sessions always included at least two kinds of input to provide multi-sensory stimulation for each veteran, and cognitive stimulation in the form of reminiscing was oftentimes combined with the sensory stimulation to provide a more meaningful experience for the veteran. For instance, a weighted gel aquarium was useful for providing tactile and proprioceptive input for the veterans, and the OTS also used the ocean scene and fish inside to prompt veterans to share stories about fishing when they were younger. Following the conclusion of each session, the OTS rated the veterans engagement levels using the outcome measure shown in Appendix B. The DCE student continued implementing the sensory sessions five days per week through the end of the capstone experience while utilizing the veteran engagement scale. SENSORY PROGRAMMING AND DEMENTIA CARE 24 Staff Education and Development Nursing, OT, and RT staff had critical roles in the implementation phase of the sensory programming. As caretakers on the units, nursing staff were responsible for ensuring that the veterans were out of bed and had received medications in time to attend the sensory sessions. However, many nurses and aides experienced staff shortages, burnout, and caregiver stress, therefore, the veterans were not always ready on time. To promote nursing staffs understanding of the importance of the veterans participation in the program, the DCE student educated nursing staff regarding the benefits of sensory stimulation for individuals with dementia and the benefits of the veterans spending time outside of their rooms and off the unit. Once staff developed a greater understanding of this, they were more willing to consistently encourage the veterans and assist them out of bed in the morning. The DCE student met with OT and RT staff early in the rotation to provide education regarding evidence-based practice principles and the advantages of using sensory interventions with older adults with dementia, so, when implementation began, OT and RT staff had already developed an understanding of the benefits of veteran participation. However, after sessions started and staff began co-leading groups with the OTS, the OTS educated staff on proper use of sensory products and discussed which types of stimulation could be achieved through use of each product. During sessions, the OTS engaged staff in discussion about the veterans observable behaviors and how those behaviors would be rated on the engagement scale. This served to enhance staffs understanding of how to properly document after implementing a session and also developed their ability to recognize when a veteran was showing signs of overstimulation, which indicated that the session should be terminated because the veterans tolerance had been reached. SENSORY PROGRAMMING AND DEMENTIA CARE 25 Student Leadership To ensure effective implementation, the DCE student relied on leadership skills including organization, communication, and decision-making. The OTS communicated with nursing staff each morning and delivered schedules to the units to ensure that veterans were out of bed at the requested time. If nursing staff experienced difficulty motivating a veteran or if a veteran was agitated by the request from nursing, the OTS entered the veterans room with nursing staff to facilitate conversation and provide encouragement. The OTS also planned all sessions and communicated the plan to the OT or RT staff member who was assisting with implementation that day. After two weeks of implementing sessions, the DCE student organized a spreadsheet and compiled and reviewed the data on veteran attendance, engagement ratings, and reactions to certain types of stimuli. In doing so, the OTS recognized the need to adjust both formatting and scheduling in order to increase effectiveness of sensory sessions and requested to meet with both the OTR and CTRS mentors. The OTS proposed changes, including advocating for the addition of more individual sessions. Once the mentors agreed to expand programming to five days per week beginning in week 11, the OTS created additional session formats and outlines and reconfigured groupings of veterans. To better engage the veterans, the OTS reviewed the RT admission evaluations for each veteran and then planned session themes based on the veterans indicated interests. For instance, two of the veterans liked old country western music whereas two other veterans preferred jazz, and three of the five veterans had experience with gardening. Using such information, the OTS rearranged groups based on who had similar past interests and used this to invite veterans to attend sessions they would be most interested in. Based on which veterans were then in attendance on a given day, the OTS chose which format to utilize and SENSORY PROGRAMMING AND DEMENTIA CARE 26 which types of sensory materials would be best to present to each veteran to increase the likelihood of them engaging. Project Outcomes Veteran Outcomes The OTS utilized the outcome measure for veteran engagement, shown in Appendix B, to gather data at baseline and following implementation of each sensory session. Engagement ratings were based on the DCE students behavioral observations of the veterans. At baseline, in the five months leading up to implementation of sensory sessions, the veterans each participated inconsistently in outings and social, physical, cognitive, and affective groups offered by RT staff. After reviewing RT documentation for each veteran and conducting direct behavioral observations in February, the OTS found that only one veteran had recently displayed disturbed/disengaged behaviors. The majority of the time when participating in RT groups, the veterans with dementia collectively tended to display engaged behaviors. However, this was often evidenced by interacting with materials such as craft supplies rather than interacting with staff or other veterans who were present. For two of the five veterans, these periods of engagement were often coupled with periods of neutral behaviors within the same session as they tended to doze or spend time just scanning the environment. The last category, very engaged, depended on the setting and the activity being offered. Though each veteran had displayed moments of being very engaged, these were infrequent and never lasted throughout the full session. For instance, when the veterans did initiate conversation, it was typically to request assistance or to state a need to return to their rooms and was rarely related to the focus of the group session. SENSORY PROGRAMMING AND DEMENTIA CARE 27 When implementation of sensory sessions began in March, the DCE student documented veteran engagement following each group and individual session. All five veterans demonstrated engaged behaviors for every sensory session in which they participated with the exception of one veteran who was agitated, or disturbed/disengaged, during one of his sessions. However, compared to baseline data, which indicated the veterans often engaged just with materials, the veterans now engaged with and interacted more with staff during the implementation phase. Two of the five participants did continue to demonstrate neutral behaviors at times during their sessions, but these behaviors were only temporary and were still shared with periods of engagement. Of note, these neutral behaviors were less likely to occur in sessions focused on the veterans indicated past interests. When the topic was meaningful to them, veterans were more likely to be rated as very engaged, and all of the veterans demonstrated very engaged behaviors in 60-100% of the sessions they participated in. Staff Outcomes Staff outcomes were related to the DCE focus of education and were measured by goal two on the goal attainment scale (Appendix A). As described above, the DCE student educated OT and RT staff on identifying veterans with dementia who may benefit from sensory interventions, planning individual and group sensory sessions to meet the veterans needs, and documenting veteran engagement following the sessions in preparation for staff taking over these duties from the OTS after the students departure. Due to the OTRs role as the evaluating therapist, the DCE student also educated the OTR on administration and interpretation of scores of both chosen assessment tools. Since education was provided to staff from these two disciplines within the CLC, this was rated a 0 on the goal attainment scale, which indicated that the most likely outcome was met. SENSORY PROGRAMMING AND DEMENTIA CARE 28 Discontinuation Planning for Sustainability Continuous quality improvement. To achieve ongoing veteran engagement in sensory sessions following completion of the DCE rotation, the OTS reflected back on the first three weeks of the implementation phase and applied continuous quality improvement principles to increase efficiency and the likelihood of success moving forward. Considering Lean Six Sigma principles for improving quality performance by identifying areas of inefficiency and seeking improvements, the OTS identified waiting, human capital, and transportation as sources of waste and addressed them accordingly (McMichael, 2016). Waiting. During implementation, veterans often missed sessions or received shortened sessions due to getting out of bed late. This resulted in the OTS and other staff waiting in the sensory room with no veteran participants at the specified session time. Consequently, this created a loss of productivity for therapy staff and negatively impacted patient care schedules for other veterans in need of OT rehabilitation appointments. Both the OTR and CTRS mentor expressed concerns that, if the sensory group could not proceed at the scheduled time, staff would not be available at another time of day, which was a threat to sustainability of the program. To address this issue, the DCE student spoke with nursing staff and began delivering printed patient schedules to the unit nursing stations at least two hours in advance of the scheduled session time to ensure that nursing staff were given ample time to provide assistance to each veteran who was expected to attend the morning sensory group. When the schedule was clearly communicated, veterans were more likely to be ready to attend on time, and OT and RT staff spent less time waiting. SENSORY PROGRAMMING AND DEMENTIA CARE 29 Transportation and human capital. Throughout the implementation phase, the OTS transported all veterans to and from their units to the dedicated sensory space. This often meant moving between floors in the CLC and making multiple trips to the same unit, which was not efficient and would not be feasible for therapy staff to continue following the DCE students departure. While the implementation of more individual sessions partially addressed this issue, transportation of sensory materials then became a greater source of waste since many individual sessions were conducted in the veterans personal rooms, with the OTS transporting items from the sensory space to the unit and back. To address these issues, the DCE student placed all sensory items on a mobile cart so that staff could move efficiently from room to room for individual sessions without needing to retrieve different sensory items each time. Also, for days when veterans needed to be transported off of their units to the sensory space for group sessions, the OTR contacted the volunteer coordinator and requested that volunteers assist with this aspect of the programming. There were typically several volunteers already sitting at the desk in the lobby, so it was a waste of human capital to not ask them for help. The coordinator was willing to assign volunteers so that, in the future, staff will now be able to save time by not having to transport patients themselves. Staff resources. To increase the likelihood of continued implementation at the end of the DCE, the OTS ensured that the OT and RT staff had resources available to guide them as program leaders. First, the OTS created a flowchart to assist staff with identifying which veterans would be appropriate to participate in sensory sessions and how evaluation should proceed. Moving to the intervention phase, the OTS organized items on the sensory cart according to type of stimulation and created a laminated full inventory list for staff to refer to when choosing sensory materials. The OTS also developed 12 session protocols, including five based on the SENSORY PROGRAMMING AND DEMENTIA CARE 30 Ross (1997) group model, which staff could utilize or use as examples for planning their own sessions in the future. Lastly, the DCE student created discipline-specific documentation templates and entered them into the electronic system to increase efficiency and consistency of staff documentation. This consistency was key when collecting program data for purposes of meeting the grant objectives, and the OTS created a spreadsheet for data tracking with all necessary information included. This spreadsheet was shared with OT and RT staff prior to the students departure and was approved by the grant leaders. Considering future planning and sustainability, the DCE student also ensured that staff had resources available should they wish to expand programming. Though there was only a small number of veterans with dementia currently residing in the CLC, there were veterans with other cognitive disorders who may benefit from participating in the sensory programming as well. The PAL (Pool, 2012) assessment is suitable for use with these individuals if staff want immediate expansion. To plan for long-term expansion and the potential addition of a dedicated dementia unit, the OTS developed a resource binder with additional information about dementiaspecific models and assessment tools, environmental suggestions for interior design, and dementia-related certifications that staff could seek to obtain for competency. Responding to Societys Needs Individuals with dementia unfortunately often experience both sensory and occupational deprivation while in care facilities (Cohen-Mansfield, Dakheel-Ali et al., 2015; Morgan-Brown, Brangan, McMahon, & Murphy, 2018). When studying five LTC units in Ireland, researchers found that facility staff often only interacted with patients when providing assistance at mealtimes or with self-care; the result was that "residents spent on average 37.6% of their time engaged and 62.4% of their time not engaged while in the communal sitting rooms" (Morgan- SENSORY PROGRAMMING AND DEMENTIA CARE 31 Brown et al., 2018, p. 5). Furthermore, researchers noted that, when patients with dementia experienced unmet needs such as sensory deprivation or a need for meaningful activity, this exacerbated agitated behaviors (Cohen-Mansfield, Dakheel-Ali et al., 2015). To respond to these needs, the DCE student implemented programming to simultaneously provide sensory stimulation to the veterans while also engaging with them. The goal was to bring the veterans off of their units and increase their activity and social participation thereby decreasing occupational deprivation that can occur in the residential setting. Through the process of evaluation and implementation, staff also appeared to become more responsive to the veterans individual needs, and it was important for staff to recognize the autonomy that individuals with dementia are still able to exhibit. Based on positive outcome ratings, the implementation of sensory programming seemed beneficial to both staff and residents within the CLC. Overall Learning Communication Throughout the DCE, the OTS used various communication strategies when interacting with the management team, OT and RT staff who were directly involved in implementation, other health providers, and the veteran participants. At the beginning of the DCE, grant details were still being finalized for purchasing sensory materials. Since a speech language pathologist (SLP) in another department of the CVAMC had secured the grant, the DCE student communicated with her and other members of the innovation network via phone and email correspondence to ensure that the DCE program would meet grant objectives and to discuss inventory. The OTS also called a retailer to discuss purchased sensory products and communicated all of this information back to the OTR and CTRS mentors. Weekly meetings were set for the DCE student and mentors to discuss progress of the project, and oral SENSORY PROGRAMMING AND DEMENTIA CARE 32 communication was the primary mode used. Oral communication was most appropriate since all parties were providing input, and it was more effective to hold face-to-face discussions when making decisions about the project. However, when these decisions then needed to be communicated to upper management, the OTS typically utilized written communication in the form of emails or printed outlines and agendas so that management would have a record of the progress that they could refer back to as needed since they were not as directly involved and were located in the main hospital rather than in the CLC. After implementation began, communication was primarily oral. Involved OT and RT staff had adjoining offices, so it was most effective to communicate scheduling needs and patient updates face-to-face as needed, especially since staff were in and out of their offices throughout the day and emails were not always readily accessible. These varied staff schedules also resulted in the need for the DCE student to revise the staff education goals that were on the original memorandum of understanding. While it was initially anticipated that the DCE student would provide an in-service or review handouts and issue surveys to staff, it became clear that educating staff in this way was not as effective as group discussion during a staff meeting and providing hands-on education during implementation of sensory sessions. Formatting was altered to make it more meaningful for staff. Following education, staff reported greater understanding of the importance of providing sensory stimulation for the veterans with dementia and how to create an individualized care plan based on each veterans needs. Communication also varied from one veteran to the next. While engaging them, the OTS found that one veteran had a difficult time hearing and responded better to nonverbal gesturing to understand what the OTS wished for him to do. However, some veterans very much enjoyed conversing and reminiscing with the OTS, so much more oral communication was used during SENSORY PROGRAMMING AND DEMENTIA CARE 33 their sessions. Once the OTS discovered how staff and the veterans learned best, this resulted in enhanced communication and better success with implementation. Leadership A key leadership skill developed throughout the DCE was communication. As described above, the OTS was responsible for communicating information to several groups in the organization. However, not all of the involved individuals were OTs, so the OTS had to learn how to present information in a way that individuals from multiple disciplines could understand. Besides adapting to respond to different learning styles, it was also important to consider personalities and the management hierarchy to determine which information needed to be delivered to each person in order to help them see the benefit of adding sensory programming to the organization. For upper management, the DCE student presented information about staffing needs to support sustainability, but when talking to the grant representatives, topics focused more on expenditures and plans for data collection. Stemming from this, the OTS also learned to resolve conflicts among individuals by listening to concerns from all involved parties and then responding in a way that addressed concerns from individuals at multiple levels in the organization. This ability to recognize and respond to potential barriers early in the planning process and to create a space for teamwork is a leadership skill that will directly translate into practice as an OTR. Advocacy During the early planning phase, the DCE student focused on advocating for the need for sensory programming through presentation of research findings. After management recognized the benefit of sensory programming for the veterans and allowed for the project to proceed with the involvement of both OT and RT staff, it became necessary to advocate for the role of OT. All SENSORY PROGRAMMING AND DEMENTIA CARE 34 group programming at the CLC was conducted by only RT staff with the exception of one gaming and one exercise group. In order to ensure that OT maintained a role in the sensory programming, the OTS advocated for the evaluations to be completed by the OTR and that OT staff would then provide suggestions to RT staff who could work with the veterans. Moving into the implementation phase, advocating for the veterans then became the primary focus throughout the remainder of the DCE. The OTS spoke with nursing staff on countless occasions about the importance of veterans partaking in activities and group programs in order to support occupational justice and prevent deprivation. SENSORY PROGRAMMING AND DEMENTIA CARE 35 References Alzheimers Association. (2018). 2018 Alzheimers disease facts and figures. Alzheimers & Dementia, 14(3), 367- 429. Anderson, K., Bird, M., Macpherson, S., McDonough, V., & Davis, T. (2011). Findings from a pilot investigation of the effectiveness of a Snoezelen room in residential care: Should we be engaging with our residents more?Geriatric Nursing (New York, N.Y.),32(3), 16677. doi:10.1016/j.gerinurse.2010.12.011 Atchison, B. J. & Dirette, D. K. (2012). Conditions in occupational therapy: Effect on occupational performance, (4th ed.). Baltimore, MD: Lippincott Williams & Wilkins Bauer, M., Rayner, J., Koch, S., & Chenco, C. (2012). The use of multi-sensory interventions to manage dementia-related behaviours in the residential aged care setting: A survey of one Australian state. Journal of Clinical Nursing, 21(21-22), 3061-3069. doi:10.1111/j.13652702.2012.04306.x Bauer, M., Rayner, J., Tang, J., Koch, S., While, C., & O'Keefe, F. (2015). An evaluation of Snoezelen compared to common best practice for allaying the symptoms of wandering and restlessness among residents with dementia in aged care facilities. Geriatric Nursing, 36(6), 462-466. doi:10.1016/j.gerinurse.2015.07.005 Berkheimer, S., Qian, C., & Malmstrom, T. (2017). Snoezelen therapy as an intervention to reduce agitation in nursing home patients with dementia: A pilot study. Journal of the American Medical Directors Association, 18(12), 1089-1091. http://dx.doi.org/10.1016/j.jamda.2017.09.009 Butcher, L. (2018). Caring for patients with dementia in the acute care setting. 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Collier, L., & Jakob, A. (2017). The multisensory environment (MSE) in dementia care: Examining its role and quality from a user perspective. Health Environments Research & Design Journal (HERD), 10(5), 3951. https://doi.org/10.1177/1937586716683508 Cruz, J., Marques, A., Barbosa, A., Figueiredo, D., Sousa, L. X. (2013). Making sense(s) in dementia: A multisensory and motor-based group activity program. American Journal of Alzheimers Disease and Other Dementias, 28(2), 137-146. doi: 10.1177/1533317512473194 Dabelko-Schoeny, H., Shin, J., Kowal, E., Overcash, J., Caterino, J., & Happ, M. (2018). Staff perceptions of adult day centers providing post-acute care for persons with dementia. Journal of Applied Gerontology, 1-20. doi:10.1177/0733464818757001 Edwards, M. (2015). Family caregivers for people with dementia and the role of occupational therapy. Physical & Occupational Therapy in Geriatrics, 33(3), 220232. https://doi.org/10.3109/02703181.2015.1031926 Eldercare Locator. (n.d.). Adult day care. Retrieved from https://eldercare.acl.gov/Public/Resources/Factsheets/Adult_Day_Care.aspx Forsyth, K., Lai, J-S., & Kielhofner, G. (1999). The assessment of communication and interaction skills (acis): Measurement properties. The British Journal of Occupational Therapy, 62(2), 69-74. doi:10.1177/030802269906200208 Gustafsson, C., Svanberg, C., & Mllersdorf, M. (2015). Using a robotic cat in dementia care: A pilot study. Journal of Gerontological Nursing, 41(10), 46-56. doi:10.3928/0098913420150806-44 SENSORY PROGRAMMING AND DEMENTIA CARE 38 Haegele, J., & Porretta, D. (2014). Snoezelen multisensory environment. Palaestra, 28(4). Harris-Kojetin, L., Sengupta, M., Park-Lee, E., Valverde, R., Caffrey, C., Rome, V., & Lendon, J. (2016). Long-term care providers and services users in the United States: Data from the national study of long-term care providers, 2013-2014. Vital & Health Statistics, Series 3(38), v-105. Heyl, V., & Wahl, H.-W. (2012). Managing daily life with age-related sensory loss: Cognitive resources gain in importance. Psychology and Aging, 27(2), 510521. https://doi.org/10.1037/a0025471 Livingston, G., Kelly, L., Lewis-Holmes, E., Baio, G., Morris, S., Patel, N., . . . Cooper, C. (2014). A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia. Health Technology Assessment, 18(39), v-226. doi:10.3310/hta18390 Lykkeslet, E., Gjengedal, E., Skrondal, T., & Storjord, M. (2014). Sensory stimulation - A way of creating mutual relations in dementia care. International Journal of Qualitative Studies on Health and Well-Being, 9, 23888-23888. doi:10.3402/qhw.v9.23888 Maseda, A., Cibeira, N., Lorenzo-Lpez, L., Gonzlez-Abraldes, I., Bujn, A., Labra, C., & Milln-Calenti, J. (2018). Multisensory stimulation and individualized music sessions on older adults with severe dementia: Effects on mood, behavior, and biomedical parameters. Journal of Alzheimers Disease, 63(4), 1415-1425. McMichael, L. (2016). Intro to strategic planning and continuous quality improvement tools: A lean six sigma approach for occupational therapists. Unpublished PowerPoint, Community Health Network. SENSORY PROGRAMMING AND DEMENTIA CARE 39 Morgan-Brown, M., Brangan, J., McMahon, R., & Murphy, B. (2018). Engagement and social interaction in dementia care settings. a call for occupational and social justice. Health & Social Care in the Community, 27(2), 1-9. doi:10.1111/hsc.12658 Moyle, W., Cooke, M., Beattie, E., Shum, D., O'Dwyer, S., Barrett, S., & Sung, B. (2014). Foot massage and physiological stress in people with dementia: A randomized controlled trial. The Journal of Alternative and Complementary Medicine, 20(4), 305-311. doi:10.1089/acm.2013.0177 Mytton, C., & Haigh, J. (2016). Sensory interventions to support the wellbeing of people with dementia: A critical review. British Journal of Occupational Therapy, 79(2), 120-126. doi:10.1177/0308022615598996 Pool, J. (2012). The pool activity level (PAL) instrument for occupational profiling, (4th ed.). London, UK: Jessica Kingsley Publishers Raber, C., & Stone, M. (2015). An exploration of volition: Caregiver perceptions of persons with dementia. The Open Journal of Occupational Therapy, 3(1). doi:10.15453/21686408.1075 Raber, C., Teitelman, J., Watts, J., & Kielhofner, G. (2010). A phenomenological study of volition in everyday occupations of older people with dementia. British Journal of Occupational Therapy, 73(11), 498-506. doi:10.4276/030802210X12892992239116 Reisman, J. E., & Hanschu, B. (1992). Sensory Integration Inventory - Revised for individuals with developmental disabilities: User's guide. PDP Press Robinson, H., Broadbent, E., & MacDonald, B. (2016). Group sessions with Paro in a nursing home: Structure, observations and interviews. Australasian Journal on Ageing, 35(2), 106-12. doi:10.1111/ajag.12199 SENSORY PROGRAMMING AND DEMENTIA CARE 40 Rosen, J., Burgio, L., Kollar, M., Cain, M., Allison, M., Fogleman, M., . . . Zubenko, G. S. (1994). The Pittsburgh Agitation Scale: A user-friendly instrument for rating agitation in dementia patients. The American Journal of Geriatric Psychiatry, 2(1), 5259. http://dx.doi.org/10.1097/00019442-199400210-00008 Ross, M. (1997). Integrative group therapy: Mobilizing coping abilities with the five-stage group. AOTA, Inc.: Bethesda, MD. Snchez Fernndez, A., Maseda, A., Marante Moar, P., Labra, C., Lorenzo-Lpez, L., & MillnCalenti, J. (2016). Comparing the effects of multisensory stimulation and individualized music sessions on elderly people with severe dementia: A randomized controlled trial. Journal of Alzheimers Disease, 52(1), 303-315. Scales, K., Zimmerman, S., & Miller, S. (2018). Evidence-based nonpharmacological practices to address behavioral and psychological symptoms of dementia. The Gerontologist, 58(Suppl_1), 102. doi:10.1093/geront/gnx167 Simpson, J. (2014). DSM-5 and neurocognitive disorders. Journal of the American Academy of Psychiatry and the Law Online, 42(2), 159-164. Sung, H., Chang, S., Chin, M., & Lee, W. (2015). Robot-assisted therapy for improving social interactions and activity participation among institutionalized older adults: A pilot study. Asia-Pacific Psychiatry, 7(1), 16. https://doi.org/10.1111/appy.12131 Timmons, S., O'Shea, E., O'Neill, D., Gallagher, P., De, S., McArdle, D., . . . Kennelly, S. (2016). Acute hospital dementia care: Results from a national audit. Bmc Geriatrics, 16, 113-113. doi:10.1186/s12877-016-0293-3 The Mental Health Foundation. (1998). Carers checklist: Appendix. Retrieved from https://www.mentalhealth.org.uk/publications/carers-checklist SENSORY PROGRAMMING AND DEMENTIA CARE 41 U.S. Department of Veterans Affairs. (2018). Cincinnati VA Medical Center: Community living center. Retrieved from https://www.cincinnati.va.gov/services/gec_community_living_center.asp VHA Innovation Ecosystem. (n.d.). Spark, seed, spread: Introducing VAs innovators network designed by employees for veterans. Retrieved from https://medium.com/vainnovation/spark-seed-spread-c8554cc36a4e Wenborn, J., Challis, D., Pool, J., Burgess, J., Elliott, N., & Orrell, M. (2008). Assessing the validity and reliability of the Pool Activity Level (PAL) Checklist for use with older people with dementia. Aging & Mental Health, 12(2), 202211. https://doi.org/10.1080/13607860801984375 World Health Organization. (2017). Dementia. Retrieved from https://www.who.int/newsroom/fact-sheets/detail/dementia Yang, Y., Wang, C., & Wang, J. (2016). Effect of aromatherapy massage on agitation and depressive mood in individuals with dementia. Journal of Gerontological Nursing, 42(9), 38-46. SENSORY PROGRAMMING AND DEMENTIA CARE 42 Table 1 SWOT Analysis SWOT Category Chillicothe VA Cincinnati VA Strengths Dedicated dementia unit Both OT and RT staff are invested in developing sensory programming and sustaining it Interdisciplinary involvement (psychology, nursing, recreation therapy) Therapeutic design used throughout the environment (murals, virtual fish tank, pictures relevant to time periods when veterans were younger) Grant has been secured for the purchase of sensory equipment/materials Sensory programming has been done within the mental health unit in the main hospital, so staff with past experience can act as valuable resources Have reported positive outcomes such as reduced falls and problem behaviors RT currently offers multiple groups that may be able to be Dedicated sensory room adapted Bird aviaries on-site Weaknesses Opportunities No involvement of OT practitioners Lack of a dedicated dementia unit Staff may direct veterans to a sensory area on the unit but then leave them and do not necessarily engage with the veterans Lack of a dedicated sensory space Nurses and the RT have access to the sensory room and can take patients there to interact with them Staff currently report having a difficult time engaging veterans with dementia, so implementing sensory programming is an opportunity to better serve Small population of veterans with dementia who are divided among three units in the facility SENSORY PROGRAMMING AND DEMENTIA CARE 43 these veterans With the interdisciplinary dedication from OT and RT, there is the opportunity to provide both individualized and group sensory sessions Possibility of building a new dementia unit in the future Threats RT reported that robotic pets were good in the beginning but have since become less of a focus No pre- and post-assessments are being used No screening process is in place to determine which veterans would be most appropriate Shortage of staff there are only two OT practitioners within the facility, so it may be difficult to provide group sessions with veterans with dementia in addition to providing treatment for all veterans in need of short-term rehab; nursing currently has 17 open positions within the facility, so nurses are being overworked and have no time to fill out additional paperwork or record observations of veterans SENSORY PROGRAMMING AND DEMENTIA CARE 44 Table 2 Sensory Materials Current CLC Inventory Assorted games (bingo, cards, checkers, dominoes, memory games) Items Available from the Mental Health Unit Boomwhackers Items Requested through Grant Funds Assorted DVDs Essential oils Bubble panel Items Requested through RT Budget Color-changing sphere Conversation cards Megapods (2) Bubble tube Follow Your Nose Balloons Squish balls Fidget kit Projector and discs Bean bags Gel aquarium Color morph lights (3) Gel floor tile Sound machine Tactile discs Newtons light up cradle Weighted blankets Dumbbell shape filled with water and objects Sand in Motion Yacker Tracker (3) Jingle bell stick Water Dancing Speakers Disco light Maraca (1) Miscellaneous fidgets Noisemakers with beads (2) Peg and loop manipulative Puzzles, assorted (4) Reminiscence items Scentscapes SENSORY PROGRAMMING AND DEMENTIA CARE ROM dances Textured balls Textured fabric swatches Textured hand mittens (3) Topic beach ball Touch-N-Tell (2) Traffic signal lamp Water and glitter tubes (3) Wiggly Giggly ball Wooden manipulatives (2) Wooden pegboard and shaped pegs 45 SENSORY PROGRAMMING AND DEMENTIA CARE 46 Appendix A. DCE Goal Attainment Scale Level of Expected Outcome Goal 1 Goal 2 +2 Much more than expected Cognitive and sensory evaluations (if appropriate) completed with 7+ veterans OT student provides staff education for staff from 4+ disciplines within the CLC 7+ group protocols completed by OT student Resource binder rated as extremely satisfactory per report of DCE mentors +1 More than expected Cognitive and sensory evaluations (if appropriate) completed with 6 veterans OT student provides staff education for staff from 3 disciplines within the CLC 6 group protocols created by OT student Resource binder rated as very satisfactory per report of DCE mentors 0 Most likely outcome Cognitive and sensory evaluations (if appropriate) completed with 5 veterans OT student provides staff education for staff from 2 disciplines within the CLC 5 group protocols created by OT student Resource binder rated as satisfactory by DCE mentors -1 Less than expected Cognitive and sensory evaluations (if appropriate) completed with 4 veterans OT student provides staff education for staff from 1 discipline within the CLC 4 group protocols created by OT student Resource binder rated as less than satisfactory per report of DCE mentors OT student provides staff education for no staff within the CLC 3 or fewer group protocols created by OT student Resource binder rated as not at all satisfactory per report of DCE mentors -2 Much less Cognitive and sensory than evaluations (if expected appropriate) completed with 3 or fewer veterans Goal 3 Goal 4 SENSORY PROGRAMMING AND DEMENTIA CARE 47 Appendix B. DCE Outcome Measure for Veteran Engagement 1 2 3 4 Disturbed/Disengaged Neutral Engaged Very Engaged Pacing/restlessness Scanning the environment (e.g., Following others or noises with eyes, but no conversation) Responding to conversation initiated by another Laughing Describing the materials Initiating conversation/ Asking questions Calling/Yelling out/Moaning Crying/teary Dozing/sleeping Wandering Verbal aggression Screaming Making verbal sexual advances Cursing Threats Constant unwarranted request for attention or help Physical aggression Hitting Kicking Grabbing onto people Pushing Throwing things Biting Scratching Spitting Hurting self or others Destroying property Making physical sexual advances Withdrawn Interacting with materials by touching them Smiling Pointing/Gesturing Eye contact Indicating interest (focused attention, but no conversation) Singing (if applicable) Collaborating with others (if applicable) SENSORY PROGRAMMING AND DEMENTIA CARE 48 Appendix C. Sample Ross (1997) Five-Stage Model Group Protocol Group Title: OT/RT Sensory Group Theme: Sports Supplies: 2# Dumbbell or Senior Fitnessize 3 different textured balls Wiggly Giggly ball Beanbags + target Megapod Device to access music Old sports photos Description: Stage I: Orientation o Pass a weight around the circle and allow members to introduce themselves o Pass 3 textured balls around the circle for tactile input o Pass around the wiggly giggly ball; have members say their favorite sport Stage II: Movement o UE Exercises May go through motions associated with different sports (pitching a baseball, shooting a basketball, throwing a football, etc) Allow each participant to choose a movement and the rest of the group members follow Stage III: Visual-Motor Perceptual Activities o Throwing with accuracy: tossing a bean bag at a target o Matching game on the Megapod-uses sports images (start with 6 squares) Stage IV: Cognitive Stimulation and Function o Reminiscence: old photos o Play Take Me Out to the Ballgame on speakers Stage V: Closing o Pass the weight around the circle again and have each member say their favorite part of the session Alternative Suggestions: To make Stage III more difficult, have vets throw bean bags into something If vet is unable to reach/touch screen in Stage IV, have them point or tell you which one they want to choose Scents of types of ballpark foods or leather (baseball glove) could be added to stimulate sense of smell Types of Stimulation Provided: Tactile, proprioceptive, visual, and auditory SENSORY PROGRAMMING AND DEMENTIA CARE Appendix D. Sample Themed, Unstructured Group Protocol Group Title: OT/RT Sensory Group Theme: The Ocean Possible Activities: Sand in Motion o Visual Stimulation Gel Aquarium o Visual Stimulation o Tactile Stimulation (gel) o Proprioceptive Stimulation (place on vets lap) Dancing Water Speakers o Visual Stimulation o Auditory Stimulation ROM o Proprioceptive Stimulation Moving feet in the water (ankle pumps) Bringing water to face (elbow flexion/extension) Throwing water into the air (shoulder flexion/extension) Paint the Ocean DVD o Visual Stimulation o Auditory Stimulation Bubble Tube o Visual Stimulation Bubble Panel o Visual Stimulation o Auditory Stimulation o Tactile Stimulation (vibration) Types of Stimulation Potentially Provided: Tactile, proprioceptive, visual, and auditory 49  ...

... Running Head: CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 1 Implementation of a Child Development Program for Women Residing at the Dove Recovery House: A Doctoral Capstone Experience Kyra-Jo Gaerke May, 2019 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Taylor McGann, OTR CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE A Capstone Project Entitled Implementation of a Child Development Program for Women Residing at the Dove Recovery House: A Doctoral Capstone Experience Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By: Kyra-Jo Gaerke Doctor of Occupational Therapy Student Approved by: Faculty Capstone Advisor Date Doctoral Capstone Coordinator Date Accepted on this date by the Chair of the School of Occupational Therapy: Chair, School of Occupational Therapy Date 2 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 3 Abstract A study done in 2018 ranked the United States by drug use (Kiernan, 2018). Indiana was ranked 7th in the lineup for having the biggest drug problem (Kiernan, 2018). Indianapolis has many addiction centers to address this issue, including the Dove Recovery House for Women. The Dove House is an inpatient facility in the heart of Indianapolis that provides housing, food, skilled treatment, and different programs to help improve the lives of women who are addicted to substances (Dove Recovery House for Women, n.d.). Prior to the start of the doctoral capstone experience (DCE) the student met with the executive director who expressed deficits in the education of child development and motherhood in the women at the facility. There are many research articles that suggest conflict in the role of motherhood when the mother is also in active addiction (Hersteiner, 2004; Pajulo et al., 2006; Slade, 2002; Suchman et at., 2004). To address these issues, the purpose of this DCE project was to develop a program that educates and encourages the mothers of Dove House about the role of motherhood and to allow individual exploration of what motherhood means for them and their children. The occupational therapy student (OTS) developed an occupation based and client centered six-week program addressing motherhood and child development. This paper describes the needs of this population, the screening process, implementation of the group and continuous quality improvement, the discontinuation process, the outcomes, and overall learning for the DCE. Based on data taken from pre and post surveys the majority of the women found the program to be effective, educational, and relevant. Keywords: substance use, child development, motherhood, program development, occupation CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 4 Implementation of a Child Development Program for Women Residing at the Dove Recovery House: A Doctoral Capstone Experience Literature Review In 2016, the Surgeon General, Vivek H. Murthy, released a report titled Facing Addiction in America. This report highlighted the serious problem that America has with substance misuse and how this problem effects not only the individuals using, but the community as well (US Department of Health and Human Services, 2016). In 2017, there were 15.7 million people that required treatment for alcohol addiction and 7.7 million people requiring treatment for illegal drug use. The highest amount of reported drug overdoses took place in 2014, which totaled to more than 47,000 people (US Department of Health and Human Services, 2016). Since 2000, the death rate of overdoses in the US has increased by 137% with a 200% increase of overdoses with opioid and heroin use (Rudd, Aleshire, Zibbell, & Gladden, 2016). From 2013 to 2014, there was a 14% increase in the amount of opioid overdose deaths. These staggering statistics demonstrate that the drug epidemic in the United States is realistic, and that education and intervention on drug use is required to decrease use and death caused by substances (Rudd et al., 2016). One facility that is fighting against the drug epidemic is the Dove Recovery House for Women. This facility is a non-for-profit inpatient recovery home for women who are truly seeking recovery from substance use (C. Dugger, personal communication, April 27th, 2018). This sober living facility is located in the heart of Indianapolis and is the largest substance abuse recovery center in Marion County. The Dove House can hold up to 40 women at one time, and currently has a 4-5 month wait list, demonstrating the extreme need for successful recovery houses in Indianapolis. Their mission statement is as follows, Dove Recovery House is CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 5 committed to empowering women to become substance free, self-sufficient, and healthy, by providing safe housing, quality programming and above all hope for the future (Dove Recovery House for Women, n.d.) When joining the house, the women are asked to commit to 90 days in the facility but are able to stay for up to 2 years. In 2017, the Dove House was able to serve 76 women; 94% of those women did not relapse, 75% are in school, working, or volunteering on a weekly basis, and 88% were reunited with their family and children. In 2017 they provided a cost-free sober living place for 76 women. The Dove House provides a way for women struggling with substance use to return to a fulfilling life without use of substances by providing them with case management services, trauma therapy, and life skills classes (Dove Recovery House for Women, n.d.). One role that is heavily influenced by addiction and is relevant to many of the women at the Dove House is motherhood. The Dove House does not allow children to stay at their facility full time, but children are allowed to visit and spend the night from Friday evening to Sunday. While with their children, many of the women struggle with finding age appropriate activities to do and are unsure how to participate in their role as a mother when someone else is keeping their child or children full time throughout the week. Studies show that women who abuse substances spend less time with their children, and the risk of child neglect is increased in this population (Silvia, Pires, Guerreio, & Cardoso, 2013). Studies also show that mothers who are abusing substances have a limited understanding about child development and struggle to understand their child or childrens underlying intentions and emotions (Suchman, Mayes, Conti, Slade, & Rounsaville, 2014). Despite the ambiguity that goes along with motherhood, this role can provide a stable identity and constant set of occupations associated with this identity (Hiersteiner, 2004). Providing a safe and loving environment for a child can offer strong CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 6 motivation for a woman seeking abstinence, but the role of a mother brings its own unique stressors and triggers (Pajulo, Suchman, Kalland, & Mayes, 2006; Hiersteiner, 2004). Occupational therapists are especially equipped to restore a persons role and routine by focusing on a clients behaviors, habits, and activities that are most meaningful to the client (Opp, 2018). These meaningful activities are also called occupations. Occupations, as defined by the AOTA (2014) occupational therapy framework are the daily life activities in which people engage (p. S6). These activities can include a diverse set of areas such as self-care tasks, driving, financial management, child rearing, sleeping, working, social participation, as well as negative occupations including addiction (Occupational Therapy Framework, 2014). Substance Abuse and Mental Health Services Administration (2015) states that, substance use disorders occur when the recurrent use of alcohol and/or drugs causes clinically and functionally significant impairment, such as health problems, disability, and failure to meet responsibilities at work, school, or home. An addicted persons concentration becomes focused on using or attaining their drug of choice, and this ends up interfering with their roles, routines and other daily occupations (Martin, Smith, Rogers, Wallen, & Boisvert, 2011). When working with those with addiction, occupational therapists usually focus on the clients dysfunctional routines, roles, and environment to improve their meaning and function in everyday life (Gutman, 2006). The Dove House is currently addressing the womens dysfunctional routines and environment by providing a structured day with interactive meetings in a safe environment that facilitates their healing (F. Brown, personal communication, January 9th, 2018). This doctoral capstone experience will address the specific role of motherhood that is relevant to many of the women at the Dove House with research demonstrating that it is often a complicated role in women with addiction. CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 7 Frameworks and models are often used to help guide the interventions and treatments as well as to strengthen and inform the areas of a project (Bonnel & Smith, 2017). For the purpose of the Doctoral Capstone Experience addressed in this paper, the Ecology of Human Performance (EHP) framework will be used. The EHPs main focuses are on preventative care, healthpromotion and rehabilitation within the scope of the clients ability to perform certain tasks in their given context (Cole & Tufano, 2008). In the EHP there are four main aspects. The first aspect is the person which consists of the skills and traits that make each human different (Cole & Tufano, 2008). The second aspect are tasks, which involves the behaviors that a person needs in order to succeed at a goal. The third aspect is the context, or the environment that surrounds a person (Cole & Tufano, 2008). The environment also includes temporal pieces such as age, phase of life, and time. The fourth and final part of the EHP is the personal-context-task transaction, which describes how the client interacts in the context to complete a performance task (Cole & Tufano, 2008). This frame of reference was chosen as the best fit for the women at the Dove House because the womens context has a large influence on their ability to perform the role of motherhood. While they were actively using substances, their context and tasks that they participated in were unhealthy. Now that they are in a recovery program, their context is positive and the tasks they participate in are healthier, but they are still learning how these positive aspects effect their person. This model can be utilized to help them develop a healthy role of motherhood despite the tasks and environmental stressors that might associate with that role. The transtheoretical model, also known as the stages of change model, is going to be utilized to guide the process of educating the women at the Dove House. This model includes seven stages that address a persons ability to identify a problem, process the problem, act on the CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 8 problem, and then change their behavior to address the problem (Prochaska & Velicer, 1997). At the Dove House, most of the women are currently in either the contemplation stage or the preparation stage. The contemplation stage consists of the clients ability to identify that they have a problem and are motivated to change but are still trying to understand the problem as a whole (Prochaska & Velicer, 1997). The preparation stage consists of the client planning for their change while obtaining the needed resources to help them make that change (Prochaska & Velicer, 1997). Some of the mothers at the Dove House are brand new, others have children who are older and grown, but each area of motherhood comes with its own challenges. By following the stages of change model, the occupational therapist will be guided on how to meet each of these women where they are at in their stage of change and provide them with the encouragement and resources that are needed to move forward. With the guidance of past research as well as the direction of the chosen model and theory, this paper and the DCE associated with it intends to educate the mothers living at the Dove House about the role of motherhood and the basic child development knowledge required for active participation in the role of motherhood through a six-week class with weekly one-hour sessions. Evaluation and Screening To analyze and assess the needs of the Dove House, an initial screening was had with the executive director, assistant director, and a case manager involved at the Dove House. The purpose of a screening, as defined by Scaffa, Reitz, and Pizzi (2010) is to provide a basis for designing interventions with targeted outcome (p. 300). Prior to this conversation, a literature search and review were done to determine the needs of women in recovery homes. The main themes taken from the literature review were discussed with the executive director, the assistant CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 9 director, and the case manager mentoring the occupational therapy student. The Dove House employees decided that the topic of focus should be on child development and motherhood. As previously mentioned, the Dove House does not provide a place for children to stay, but they do allow visited from Friday to Sunday. Many of the women have children who are living with family members or are able to get scheduled visits through the Department of Child Services (DCS). During these visits, the case managers and employees of the Dove House are noticing a lack of activities provided to the children by the mothers due to lack of comfort and knowledge on the childrens skills and development (C. Dugger, W. Noe, and F. Brown, personal communication, April 27th, 2018). This observation is consistent with the literature addressed in the literature review stating that mothers who are addicted to substances have less understanding of the intentions and emotions of their children (Suchman, Mayes, Conti, Slade, & Rounsaville, 2014). With the implementation of a class addressing these areas and following the guidelines given by the employees at the Dove House, the OTS hopes to increase the understanding and connection between mothers at the Dove House and their children. To determine the needs of the women, a needs assessment was written by the OTS and given prior to morning meeting. Morning meeting is a required meeting for all of the women in the house that takes place at 8am daily. An announcement was made discussing the purpose of the survey, and all women were asked to take the survey. The survey was written by the OTS and aimed to collect topics in which the women are struggling with relating to parenting, their current knowledge on the basic childhood milestones, and how they currently viewed their role as a parent. After morning meeting, two surveys were returned. The women were given one verbal reminder throughout the day, and two more surveys were returned. The OTS used the four returned surveys to further research the needs of the women regarding childhood development CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 10 and motherhood. The following topics were found to be important to those who returned the survey; reconnecting/reuniting/bonding, disciplining, developmental hinders on child due to drug use, general child development, finances, honesty when discussing addiction with children, and shame and acceptance. Throughout the first four weeks of placement at the Dove House, discussions took place between the OTS and the women at the Dove House to further investigate the topics to be addressed during the educational sessions due to the lack of return on the surveys. The women, in line with those who filled out the survey, verbalized a need for activities to do with their children during their visits as well as knowledge of basic development skills for each age level. The women stated that they are looking for a more informational and educationally based program (Women living at the Dove House, personal communication, January 7th, 2019February 1st, 2019). The Dove House provides many services to the women of Dove House through the lens of social work. Most of the employees at Dove House are either currently in school to become a social worker, or already have their social work degree. The Dove House does not have a licensed occupational therapist, and therefore it was not appropriate to use an occupation therapy-based assessment on the women at the Dove House for this capstone project due to sustainability purposes. Instead, the OTS developed a needs assessment focused on the role of a mother and child development that could be used in the future by the Dove House employees. A needs assessment is done to verify that the research done by the practitioner matches the needs of the specific population or clienteles that the practitioner is working with in order to provide an inclusive and meaningful session (Scaffa, Reitz, & Pizzi, 2010). CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 11 Implementation Curriculum Guide and Program Implementation In order to address the occupational role of motherhood and child development requested by both the employees of the Dove House and the women living at the house, the OTS developed a 6 week program to educate the mothers on their specific needs surrounding motherhood and children, including how drug use effects children in utero, basic child development milestones, discipline, activities for children in specific age groups, and how to connect and reconnect with children. The program took place on Fridays from 1:30p to 2:30p on the second level of the Dove House in the library room. This class, as well as all other classes and groups at the Dove House, was mandatory for the women to participate in if they were at the house at the time of the class. The women were excused if they had court, work, school, or a pre-scheduled appointment. The OTS used the text Group Dynamics in Occupational Therapy written by Marilyn B. Cole (2012) in order to implement the class in a therapeutic manner. The first session introduced the class, how it would be structured over the next 6 weeks, when it took place, and the rules associated with group. This was then followed by giving out the pre survey with questions addressing their knowledge base of the topic covered during that session using a three-point rating scale with the option of choosing not knowledgeable, somewhat knowledgeable, and very knowledgeable. All surveys are found in the Appendix A through F of this paper. The initial session educated the women on the development of the child in utero and progressed to the development of an 18-month-old. At the end of every session, the women were given a post-survey that was identical to the pre-survey with the addition of the open-ended question, what did you learn? The women were also asked if they had any questions, concerns, or comments that needed to be addressed before closing, or information that CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 12 they would like in the following weeks session. The session was then concluded, and the women were dismissed. The sessions all followed the same general format as the first session while addressing the following topics: Development of children 18 months -12 months and tantrums, development of ages 3-10, childhood trauma, and parenting styles. The final sixth session was a jeopardy game to summarize and review the information they learned throughout the class, followed by a survey to evaluate the class that included a Likert rating scale (see Appendix F). Education on Addiction and Leadership A large part of this doctoral capstone experiences was for the OTS to increase knowledge and leadership skills to better serve those with addiction in future practice. In order to fulfill this part of the project, the student worked the desk daily, lead morning reflection, and attended at least one group session, court case, or outing throughout the week. Working the front desk at the Dove House allowed the student to assist the women living at the facility with their daily needs. The front desk worker allocates the cleaning supplies for the women to participate in their chores, answers the phone for individuals calling in for assistance or questions, checks the womans schedules when they leave the facility to be sure they are following their specific weekly schedules, facilitates the women when they need to meet with their social worker, provides supervision for the women while they take their daily medication, and administers drug screens throughout the day. The front desk is the action center of the entire facility and a great way to get to know each individual living in the house. Attending and leading the morning reflection meeting was also a way to develop rapport with the women at the Dove House and understand their concerns and needs on a personal level. Morning reflection is a mandatory house meeting that takes place every morning at 8am and includes all of the women CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 13 and at least one employee of the Dove House. The meeting takes place in the living room and begins with an uplifting song and a motivational message. It is then opened up for the women to share any thoughts or feelings they experienced during the song or reading, and continues to progress into any house concerns, appreciations, or announcements that need to be made. The OTS was able to lead this group sporadically throughout her time at the Dove House, allowing her to develop a better understanding of the rules and regulations asked of the women by the Dove House. The group sessions the student attended include in house groups titled individualized outpatient (IOP) session, 12-step skills group, and relapse prevention group. These groups are all held by social workers that are employed at the Dove House. There are also community programs that come to the Dove House on a weekly basis to provide educational programs including Nurturing Parent, Making Changes Stick, Dream Center Group, and Big Bible Study. The Dove House also provides Alcohol Anonymous (AA) and Narcotics Anonymous (NA) and Heroine Anonymous (HA) that are for the women in the house and to any other women in the community as well. By attending and participating in the classes with the women at the Dove House, the OTS was able to develop a deeper understanding of what addiction is, how it effects the entirety of the person and those involved in their life, and more specifically how it has affected the lives of the women living at the Dove House. Through the education and getting to know the population at the Dove House, the OTS was able to develop a child development class based on the womens identified needs. The number of women that attended fluctuated from 10 to 30 women. Initially, the sessions included within the class consisted of three child development sessions, one session on reconnecting, one on discipline, and one on finances. After the first two sessions, the women expressed the need for CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 14 more in-depth development sessions, especially in regard to mothering older children. To accommodate for these needs, the third class continued to address development and the final three classes addressed topics that the women wanted to learn about including childhood trauma and parenting styles related to child development. The OTS still incorporated reconnecting, discipline, and finances into the sessions, but provided less detail than originally planned. The last session was used to summarize what the women had learned throughout the entire class. The general class outline can be found in Appendix G. The OTS utilized The Intentional Relationship text written by Renee Taylor (2008) in order to help guide the group and establish a relationship with the women of the house. The population of the group consisted of all women, most of the who were older than the OTS who had experienced addiction and trauma throughout their lives. The OTS, who prior to this DCE, had little experience with trauma and/or addiction as well as motherhood, was able to further develop her skills in assertiveness, confidence, empathy, understanding, and leadership throughout the implementation of this class. Throughout the implementation of the class, there were some interpersonal challenges that the student faced. The first challenge that came about was the time of the class. It took place on Fridays from 1:30p-2:30p, as this was the time that worked best for the staff. Before the implementation of this class, the women living at the house had free time from noon on, so the start of the class was an unwanted event. To address this, the student made sure to include hands on activities, exciting discussion, and spent some time prior to the start of class just talking to the women about their day. The OTS also kept the class informal, laid back, and comfortable by sitting with the women rather than standing in front and presenting the information to them. Another challenge that came forth rather early was the age and role difference between the OTS and the women living at the Dove House. Although the Dove House women range from ages 17 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 15 to 63 years of age, the majority of women are in their 30s and 40s. The student is 24 years old and has never participated in the motherhood role. This was brought up by some of the women, with one woman stating, So you are going to teach me how to be a good mom when youve never been one and are the same age as my kids? (Woman living at the Dove House, personal communication, February 8th, 2019). The OTS first addressed this question by discussing that the purpose of this class was not to make them better mothers, but provide basic child development education, allow them to explore what motherhood means to them and provide them with tools to allow them to further embrace this role. The student also discussed the role of evidence-based practice in occupational therapy and gave a brief summary of her educational background to demonstrate competence and understanding related to this topic. The student also told the women that if they had any concerns or questions about the information provided to them, she would be happy to provide them with the research behind it. After the OTS explained the purpose of the group and her expertise in this area, the women were more accepting to the education provided and were more willing to participate in the class. Resource Binder and Staff Development In order to provide a lasting resource for the Dove House, the OTS has complied a resource binder for staff use. When a new group of women come in and are having reservations about their role as a mother, the OTS developed a class for the staff to follow if they chose to address this topic. The resource binder includes an outline of topics for each session (a total of 6 sessions) along with handouts for the women to accompany each session, and surveys to assess the effectiveness of the class. There will also be supplemental community resources of local lowcost activities for the women to use to identify developmentally appropriate activities for their children to participate in on the weekends. To address staff development, the OTS explained her CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 16 resources to the staff at the staff meeting on the students final week at the site. She answered any questions that they had about implementation and gave full access to all resources and research that was done throughout the DCE. In addition to staff education on the class provided, the OTS also incorporated informal education during conversations throughout the DCE to discuss and show how OT is beneficial and can play a role in mental health treatment. Discontinuation and Outcome The focus of this DCE was to develop a program that provided quality education to the women of the Dove House education on a topic that was not being properly addressed at the site in order to improve an important role in their lives. The OTS provided this program using evidence-based practice to guide the weekly educational session and organized a binder to allow sustainability of the group in the future for Dove House. Another focus of this DCE was to allow the OTS to become immersed in the addiction population to better understand the diagnosis of addiction and how to treat this population upon completion of her degree. The child development class took place every Friday for 6 weeks and focused on discussing basic developmental milestones of children up to 18 years old, activities for different age groups, how to raise a child with trauma, disciplining children, parenting styles, and effects of drug use on children. The hope for this class was by addressing those topics, the women would establish knowledge and skills to use in their daily lives to develop a stronger sense of motherhood by improving their interaction and connection with their children. Every class consisted of a PowerPoint presentation based around a specific developmental period and chosen topics that related to that period. There was a pre and post survey given before and after class in order to address quality improvement. The survey asked specific questions related to the weekly session with the following answer choices, not knowledgeable, somewhat knowledgeable, CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 17 and very knowledgeable. To assess the pre and post survey outcomes, the amount of people that answered under each choice was counted and then converted to a percentage in order to compare the amount of educational growth each class provided for the women. Outcome Measure Analysis The first session was focused on the effects that drug use has on the children in utero, the development of children from birth to 12 months, Erikson stage one, emotional regulation development, and an infant massage activity and discussion. The survey questions addressing the first session included the womens confidence and knowledge associated with the sensory development, motor development, cognitive development, emotional development, social development, and activities to do with children ages birth to 18 months old. As supported by the data shown in Appendix H, there was a heavy increase in knowledge and confidence when looking at the questions related to sensory development, motor development, cognitive development, social development, and emotional development of ages birth to 18 months. There was no change in the pre and post question related to confidence in finding activities to do with children ages birth to 18 months. This area was not addressed in the first session due to decreased time and was instead addressed at the beginning of session two. Session two focused on ages 18 months to 36 months and addressed development, reflective functioning, emotional regulation tantrums, Erikson stage 2, and age appropriate activities. Based on the data, there was an increase in knowledge and confidence for all questions addressed in the survey. Participants rated having at least some knowledge and confidence in every area addressed except coming up with activities for children 18 to 36 months old. The pre survey data shows that 21% of people were not knowledgeable or confident in coming up with activities for ages 18 months to 36 months and in the post survey this percentage decreased to CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 18 8% of the women were not confident or knowledgeable. The data for this session can be found in Appendix I. Session three provided education on ages three to 10 with survey addressing development, Erikson stages three and four, imposter phenomenon, and brainstorming activities for children ranging from six to 10 years old. Based on the survey results found in Appendix J, there was an increase in knowledge and confidence in every area when comparing the pre and post surveys. The results of the post survey showed that all participants felt somewhat or very knowledgeable or confident in the topics that were addressed in the survey. There were no participants that felt as though they were not knowledgeable or confident at all after the class in any of the topics addressed in the survey. Session four marked the end of the developmental sessions and the start of the sessions that were focused on special interests based from the feedback the women gave to the OTS during the sessions. The topics of session four included Erikson stages five and six as well as trauma and parenting. The questions that were asked in the pre and post survey included identifying factors that influence trauma in children, recognizing the signs of trauma, familiarity in assisting a child who has trauma, and how to prevent secondary trauma. There was an increase in confidence and knowledge in all topics except for the question addressing secondary trauma. This question was worded as follows, Are you familiar with the term secondary trauma? If so, how familiar are you with strategies to prevent secondary trauma? Along with the typical three answer choices (not knowledgeable/confident, somewhat knowledgeable/confident, and very knowledgeable/confident), this question included one more option that was, I am not familiar with the term secondary trauma. In the pre survey, 13% of people chose this added answer and in the post survey 39% of people chose it. After asking the participants about their answer the CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 19 following week in group, the OTS accredits this decrease in familiarity of the term secondary trauma to an unfamiliar set up of the survey due to an additional answer option. The results of this session can be found in Appendix K. Session five was focused on parenting and included education on parenting styles, answering necessary but uncomfortable questions that children might ask about the mothers past lifestyle, plan development for children if they are suspected to be using substances, and traits that effect a persons temperament. There was an increase in knowledge and confidence in all the topics addressed in the survey, with the most significant knowledge and confidence increase being on the traits of temperament and types of parenting styles. These questions both demonstrated a 47% increase in the pre and post survey scores for the very knowledgeable/confident choice. The calculated results can be found in Appendix L. Session six was the final class and consisted of a review of what was taught throughout the class and the discontinuation of the program. Instead of a pre and post survey, the OTS gave the participants an overall evaluation of the class as a whole. The participants were asked to rate their answers to each question on a Likert scale that consisted of the following options; strongly disagree, disagree, neutral, agree, and strongly agree. The first statement that they were asked to rate was, This class was relevant to me. Seventy two percent either agreed or strongly agreed. The second statement was, This class was interesting to me. Eighty six percent of the women either agreed or strongly agreed. The participants were asked if the class provided them with knowledge and skills to use in the future. Seventy eight percent of women either agreed or strongly agreed. The fourth statement stated, I have utilized what I learned in this class with my own children. Forty two percent of women that participated in the evaluation either agreed or strongly agreed with this statement. The OTS speculates that the low percentage of the women CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 20 who agreed or strongly agreed to this question is due to some of the women not having kids at this point in their life. The last statement that the women were asked to rate was I am satisfied with this class. Eighty-six percent of the women either agreed or strongly agreed with this statement. The results of this evaluation can be found in Appendix M. Response to Societys Needs Based on the results from the pre and post survey as well as the overall class evaluation, this class was beneficial to the women at the Dove House and they were able to learn many skills that will further benefit their role of motherhood. Through the education that was provided to them in class, the women learned how to intentionally interact with their children or future children in order to improve their current and future relationships. Research states that mothers using substances are more likely to have parenting deficits and spend less time with their child (Suchman et al., 2004; Heristeiner, 2004). By educating the women of the Dove House on this information and providing them with the client centered educational class, they are more likely to leave the Dove House and join the community as functional mothers in society. Another way this DCE addressed the needs of the society is by advocating for occupational therapists in mental health and addiction settings. In a recent educational discussion about addiction with author David Sheff and cofounder of Alexandria Summit, Lynnne Zydowsky, it was stated that one of the greatest needs to improve treatment centers in the US is evidence-based practice (Fiddia-Green, Sheff, & Mills, 2019). Occupational therapy is rooted in evidence-based practice and can provide a unique angle on addressing addiction in order to achieve holistic, evidencebased treatment for all of those in need of addiction services. CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 21 Quality Improvement Quality improvement was addressed in many ways throughout this project. The pre and post surveys allowed the women to reflect on what they learned in class, and if it was taught in a way that allowed them to retain the information. It also allowed them to rate their confidence or knowledge in the topics that were being addressed in class and if it was meaningful to them. At the end of every class the OTS asked if there were any topics that the participants would like to know more about, or if they had any further questions about the topics presented. This allowed reflection and clarification to increase understanding of the education presented. The final way quality improvement was addressed was by the participants completing the final survey and answering questions about group improvement and what would make the class more beneficial for them. These areas were intentionally analyzed to improve the performance and purpose of the services provided to the women at the Dove House while adhering to the established outcomes of the project that provided sound guidance for the student to follow throughout the class. By addressing quality improvement within the program, the OTS was able to demonstrate entry level knowledge, use and apply critical thinking skills through evidence-based practice, demonstrate competence through reflective and holistic practice, improve and use leadership skills, and implement theory into the program to cater to the specific needs of the women at Dove House. Overall Learning Communication played an extremely imperative role throughout the entire experience at the Dove House. Due to the fragile state that many of the women are in upon arriving at the Dove House, the staff needs to constantly be on alert, able to simply and effectively communicate, and be acutely aware of the plans in case of an emergency. The Dove House has a CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 22 daily log that is kept at all hours throughout the day, and the OTS was required to record any notable information in the log including drug test results, resident outbursts, unusual behaviors, urgent phone calls, etc. Even though much information was written in the log, it was still very important to verbalize these things to another staff member at the Dove House to allow an open flow of communication and awareness of daily events. The staff of the Dove House made it a priority to have appropriate open communication with the residents as well. Every morning during the morning reflection, the staff and women residing at the house would discuss any needs, concerns, or praises that they had. There were a few times when the OTS and staff had to address the relapse of a resident and during these times, the women residing in the house were able to open up and share their feelings in a safe and loving environment. These relapses were sad and scary moments for everyone, but the group conversation allowed the experience to be processed in a healthy way. Nonverbal communication was used quite often in the house as well. Many times, the women just need someone to listen, someone to hug, or a quiet office with someone to sit with until they felt like they were ready to move on with their day. There were also times when they dealt with their fear or stress in a non-functional way and the OTS or staff were yelled at. During these times, the women were told their actions were inappropriate, required some time alone to cool off, and then were assisted by staff to develop a plan to demonstrate emotions in a more constructive manner in the future. Throughout the DCE, the student had many interactions with significant others, family members, health professionals, and the general public. By answering the phone at the front desk, the OTS was able to interact with many family members, friends, case managers, health professionals, and women in need as they called in to receive more information on the Dove CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 23 House and to schedule assessments. The OTS also provided assessments to clients in order to determine their fit for the Dove House program. The potential resident would either come alone, with a case worker, or with family or friends, and the OTS would ask questions to gather the persons history, drug use, mental health, and criminal background. After the assessment, the student would tell the potential client further information about the Dove House, the rules and regulation for the wait list, and the importance of communication throughout the entire waitlist process. Upon a bed opening, the new resident would arrive with her belongings and any family, case workers, or friends that came to drop them off. The OTS would give the family and resident a tour of the facility and allow her to settle into her new home while answering any remaining questions that the family or resident had. The Dove House is gaining popularity in Indianapolis due to the high success of the program as well as it being free for the women upon moving in. Due to the awareness growing around the organization, there were many health professionals coming to the facility for a tour and a visit. The OTS would help assist and lead during these tours in order to educate on the Dove House and what it stands for. During these tours, the OTS was able to learn more about local, state and government organization and provide education on the services that Dove House provides. The OTS was asked by family members, case workers, and health professionals what she was studying in school. This allowed for many informal discussions about the University of Indianapolis and how occupational therapy can be applied to all areas of mental health and addiction. The OTS spent the most of her DCE experience developing a deeper understanding of the disease of addiction by learning from and developing strong relationships with those who are diagnosed with it, those who are affected by it, and those who are fighting against it. The CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 24 experience was emotional, exhausting, intense, and at times it was terrifying to see the effect that addiction can have on a person. The Dove House has provided such an environment that these raw emotions are welcomed, discussed, and freely communicated so they can be processed in a healthy way by those effected. The 14-week DCE came with many hardships including overdoses, relapses, eating disorders, anger, and fear. Despite this, the passion, love, support, and forgiveness that pours from the Dove House is what held the lasting effect on the student. This DCE provided more than just a grade and an educational platform for the student to grow in; it provided the student with more than 40 incredible women who are working to change the way the world sees addiction. CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 25 References American Addiction Centers. (n.a). Group Therapy vs Individual Therapy. Retrieved from https: https://americanaddictioncenters.org/therapy-treatment/group-individual American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48 Bonnel, W., & Smith, K. (2017). Proposal Writing for Clinical Nursing and DNP Projects. Springer Publishing Company. Cole, M.B., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK, Inc. Dove Recovery House for Women. (n.d). Triumph over addiction. Retrieved from: https://doverecoveryhouse.org/home Fiddia-Green, C., Sheff, D., & Mills, B. (2019, March). A conversation with David Sheff. In Lynne Zydowsky (Chair), The Addicted Brain. Symposium conducted at the meeting at Clowes Memorial Hall in the Butler Performing Arts Center in Indianapolis, IN. Gutman, S.A. (2006). Why addiction has a chronic, relapsing course. The neurobiology of addiction: Implications for occupational therapy practice. Occupational Therapy in Mental Health, 22 (2), 1-29. Hiersteiner, C. (2004). Narratives of low-income mothers in addiction recovery centers: Motherhood and the treatment experience. Journal of Social Work Practice in the Addictions, 4(2), 51-64. Kiernan, J.S. (May 14, 2018). Drug use by state: 2018s problem areas. Retrieved from https://wallethub.com/edu/drug-use-by-state/35150/#main-findings CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 26 Koukourikos, K. & Pasmatzi, E. (2016). Group therapy in psychotic inpatients. Health Science Journal, 8 (3), 400-408. Martin, L. M., Smith, M., Rogers, J., Wallen, T., & Boisvert, R. (2011). Mothers in recovery: An occupational perspective. Occupational Therapy International, 18(3), 152-161. Opp, A. (2018). Recovery with purpose: Occupational therapy and drug and alcohol abuse. American Occupational Therapy Association. Retrieved from: https://www.aota.org/About-OccupationalTherapy/Professionals/MH/Articles/RecoveryWithPurpose.aspx Pajulo, M., Suchman, N., Kalland, M., & Mayes, L. (2006). Enhancing the effectiveness of residential treatment for substance abusing pregnant and parenting women: Focus on maternal reflective functioning and motherchild relationship. Infant Mental Health Journal: Official Publication of The World Association for Infant Mental Health, 27(5), 448-465. Prochaska, J. O., & Velicer, W. F. (1997). The transtheoretical model of health behavior change. American Journal of Health Promotion, 12(1), 38-48. Rudd, R.A., Aleshire, N., Zibbell, J.E., & Gladden, R.M. (2016). Increases in drug and opioid overdose deaths-United States, 2000-2014. American Journal of Transplantation, 16(4), 1323-1327. Scaffa, M., Reitz, S., & Pizzi, M. (2010). Occupational therapy in the promotion of health and wellness. Philadelphia, PA: F.A. Davis Company. Silva, S. A., Pires, A. P., Guerreiro, C., & Cardoso, A. (2013). Balancing motherhood and drug addiction: The transition to parenthood of addicted mothers. Journal of Health Psychology, 18(3), 359-367. CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE Slade, A. (2002). Keeping the baby in mind: A critical factor in perinatal mental health. Zero to three, 22(6), 10-16. Substance Abuse and Mental Health Services Administration. n.d. Mental Health and Substance Use Disorders. Retrieved from https://www.samhsa.gov/find-help/disorders Suchman, N., Mayes, L., Conti, J., Slade, A., & Rounsaville, B. (2004). Rethinking parenting interventions for drug-dependent mothers: From behavior management to fostering emotional bonds. Journal of Substance Abuse Treatment, 27(3), 179-185. Taylor, R. R. (2008). The intentional relationship: Outpatient therapy and use of self. FA Davis. US Department of Health and Human Services. (2016). Facing addiction in America: The Surgeon Generals report on alcohol, drugs, and health. Washington, DC: HHS, 6. 27 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 28 Appendix A Session One Pre Survey How knowledgeable are you in the sensory development of ages birth to 18 months (1.5 years)? 2. 3. 4. 5. 6. a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable How knowledgeable are you in the motor development ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable How knowledgeable are you in the cognitive development of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable How knowledgeable are you in the social development of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable How knowledgeable are you in emotional regulation of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable How confident are you in finding/coming up with activities to do with children ages birth to 18 months (1.5 years)? a. Not confident b. Somewhat confident c. Very confident CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 29 Session One Post Survey 1. How knowledgeable are you in the sensory development of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you in the motor development ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you in the cognitive development of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you in the social development of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 5. How knowledgeable are you in emotional regulation of ages birth to 18 months (1.5 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 6. How confident are you in finding/coming up with activities to do with children ages birth to 18 months (1.5 years)? a. Not confident b. Somewhat confident c. Very confident 7. What did you learn? CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 30 Appendix B Session Two Pre Survey 1. How knowledgeable are you in the sensory development of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you in the motor development ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you in the cognitive development of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you in the social development of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 5. How knowledgeable are you in emotional regulation of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not confident b. Somewhat confident c. Very confident 6. How confident are you in finding/coming up with activities to do with children ages 18 months (1.5 years) to 36 mos (3 years)? a. Not confident b. Somewhat confident c. Very confident CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 31 Session Two Post Survey 1. How knowledgeable are you in the sensory development of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you in the motor development ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you in the cognitive development of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you in the social development of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 5. How knowledgeable are you in emotional regulation of ages 18 months (1.5 years) to 36 mos (3 years)? a. Not confident b. Somewhat confident c. Very confident 6. How confident are you in finding/coming up with activities to do with children ages 18 months (1.5 years) to 36 mos (3 years)? a. Not confident b. Somewhat confident c. Very confident 7. What did you learn? CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 32 Appendix C Session Three Pre Survey 1. How knowledgeable are you in the motor development of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you in the cognitive development of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you in the social development of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you in emotional regulation of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 5. How confident are you in finding/coming up with activities to do with children ages 3-4? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 6. How confident are you in finding/coming up with activities to do with children ages 4-5? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 7. How confident are you in finding/coming up with activities to do with children ages 5-6? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 8. How confident are you in finding/coming up with activities to do with children ages 610? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 33 Session Three Post Survey 1. How knowledgeable are you in the motor development of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you in the cognitive development of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you in the social development of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you in emotional regulation of ages 3-10? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 5. How confident are you in finding/coming up with activities to do with children ages 3-4? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 6. How confident are you in finding/coming up with activities to do with children ages 4-5? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 7. How confident are you in finding/coming up with activities to do with children ages 5-6? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 8. How confident are you in finding/coming up with activities to do with children ages 610? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 9. What did you learn? CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 34 Appendix D Session Four Pre Survey 1. How knowledgeable are you on the factors that influence trauma in children/young adults? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you on recognizing the signs of trauma in children/young adults? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you on the ways to assist a child who is experiencing trauma? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. Are you familiar with the term secondary trauma? If so, how familiar are you with strategies to prevent secondary trauma? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable d. I am not familiar with the term secondary trauma Session Four Post Survey 1. How knowledgeable are you on the factors that influence trauma in children/young adults? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 2. How knowledgeable are you on recognizing the signs of trauma in children/young adults? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you on the ways to assist a child who is experiencing trauma? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. Are you familiar with the term secondary trauma? If so, how familiar are you with strategies to prevent secondary trauma? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable d. I am not familiar with the term secondary trauma CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 5. What did you learn? 35 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 36 Appendix E Session Five Pre Survey 1. Do you feel like you are equipped to answer the tough questions that your kids might ask? e. No f. Somewhat g. Yes 2. How knowledgeable are you on developing a plan if you find your child is using/abusing substances? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you on the different parenting styles? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you on the traits of temperament? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable Session Five Post Survey 1. Do you feel like you are equipped to answer the tough questions that your kids might ask? a. No b. Somewhat c. Yes 2. How knowledgeable are you on developing a plan if you find your child is using/abusing substances? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 3. How knowledgeable are you on the different parenting styles? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 4. How knowledgeable are you on the traits of temperament? a. Not knowledgeable b. Somewhat knowledgeable c. Very knowledgeable 5. What did you learn? CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 37 Appendix F Session Six Class Evaluation 1 Strongly Disagree 2 Disagree 3 Neutral This class was relevant to me. This class was interesting to me. This class provided me with knowledge and skills to use in the future. I have utilized what I learned in this class with my own children. I am satisfied with this class. How did this class help you? What are some of the concepts that you took away from this class? What would you do to improve this class? What other topics should this class include? Additional comments/questions/concerns. 4 Agree 5 Strongly Agree CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE Appendix G General Class Outline I. II. III. Session 1-Intro and Child Development a. About Me b. About this class i. Rules, time it takes place, what we are learning about, structure of class c. Survey d. In Utero Development i. Teratogens e. Development Birth-6mos old i. Emotional regulation f. Activity: Baby Massage g. Development 6-12 mos old i. Emotional Regulation h. Development 12-18 mos old i. Emotional Regulation i. Erikson and Stage 1 j. Post Survey k. Questions/Comments/Suggestions Session II-Child Development a. Questions from last class b. Pre-Survey c. Development 18 mos-24 mos d. Reflective Functioning i. What it is ii. Examples iii. Benefits e. Development 24-36 mos i. Emotional Regulation f. Erikson and Stage 2 g. Tantrums i. Tantrum scenarios ii. How to prevent tantrums iii. Helpful phrases to use with kids to calm them h. Post Survey i. Questions/Comments/Suggestions Session III-Child Development a. Questions from last class b. Pre-Survey c. Development 3-4 years i. Emotional Regulation ii. Brainstorm Activities for 3-4 year olds 38 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE IV. V. VI. d. Development 4-5 years i. Brainstorm activities for 4-5 year olds e. Erikson-Stage 3 f. Development 5-6 year olds i. Brainstorm activities for 5-6 year olds g. Erikson-Stage 4 h. Imposter Phenomenon i. Development 6-10 years old i. Brainstorm activities for 6-10 year olds j. Post Survey k. Questions/comments/suggestions Session IV: Child Development and Trauma a. Questions from last class b. Pre-survey c. Screen time *follow up research from last class d. Erikson Stage 5 e. Erikson Stage 6 f. Trauma i. Factors influencing childhood trauma ii. Signs of trauma in different age groups iii. How a parent can help a child with trauma iv. Secondary trauma v. Prevention of secondary trauma g. Brainstorming tough kid questions for next class h. Post Survey i. Questions/comments/suggestions Session V- The Tough Stuff a. Questions from last class b. Pre-Survey c. The hard questions i. Helpful Insights ii. The plan iii. Your tough questions d. Parenting Styles i. Authoritative ii. Permissive iii. Uninvolved iv. Authoritarian v. Reflection Questions e. Temperament f. Post Survey g. Questions/comments/suggestions/any final questions Session VI (Last session)- 39 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE a. b. c. d. Summary Discussion of motherhood and selves Discontinuation of group Any last burning questions the women had that OTS can answer 40 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 41 Appendix H Session One Outcome Data Not Somewhat Very Knowledgeable/Confident Knowledgeable/ Knowledgeable/Confident Confident Questions Pre %/Post % Pre %/Post % Pre%/Post% How knowledgeable are you in the sensory development of ages birth to 18 months (1.5 years)? Pre 8% / Post 0% Pre 54%/ Post 43% Pre 38%/ Post 57% How knowledgeable are you in the motor development ages birth to 18 months (1.5 years)? Pre 8%/Post 0% Pre 62%/ Post 46% Pre 30%/ Post 54% How knowledgeable are you in the cognitive development of ages birth to 18 months (1.5 years)? Pre 15%/ Post 0% Pre 54%/ Post 43% Pre 31%/ Post 57% How knowledgeable are you in the social development of ages birth to 18 months (1.5 years)? Pre 8%/ Post 0% Pre 62%/ Post 50% Pre 30%/Post 50% How knowledgeable are you in emotional regulation of ages birth to 18 months (1.5 years)? Pre 8%/ Post 0% Pre 69%/Post 46% Pre 23%/ Post 57% How confident are you in Pre 0%/ Post 0% Pre 46%/Post 46% Pre 54%/ Post 54% CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE finding/coming up with activities to do with children ages birth to 18 months (1.5 years)? 42 CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 43 Appendix I Session Two Outcome Data Not Somewhat Knowledgeable/ Knowledgeable/ Confident Confident Very Knowledgeable/ Confident Questions Pre %/Post % Pre %/Post % Pre%/Post% How knowledgeable are you in the sensory development of ages 18 months (1.5 years) to 36 mos (3 years)? Pre 14%/ Post 0% Pre 79%/Post 8% Pre 7%/ Post 92% How knowledgeable are you in the motor development ages 18 months (1.5 years) to 36 mos (3 years)? Pre 36%/ Post 0% Pre 50%/Post 15% Pre 14%/ Post 85% How knowledgeable are you in the cognitive development of ages 18 months (1.5 years) to 36 mos (3 years)? Pre 29%/ Post 0% Pre 57%/ Post 21% Pre 14%/ Post 77% How knowledgeable are you in the social development of ages 18 months (1.5 years) to 36 mos (3 years)? Pre 21%/ Post 0% Pre 57%/ Post 21% Pre 21%/ Post 77% How knowledgeable are you in emotional regulation of ages 18 months (1.5 years) to 36 mos (3 years)? Pre 14%/ Post 0% Pre 79%/ Post 23% Pre 7%/ Post 77% How confident are you in finding/coming up with activities to do with children ages 18 months (1.5 years) to 36 mos (3 years)? Pre 21%/ Post 8% Pre 50%/Post 15% Pre 29%/ Post 77% CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 44 Appendix J Session Three Outcome Data Not Somewhat Knowledgeable/ Knowledgeable/ Confident Confident Questions Pre %/Post % Very Knowledgeable/ Confident Pre %/Post % Pre%/Post% How knowledgeable are you in Pre 13%/ Post 0% the motor development of ages 310? Pre 62%/Post 40% Pre 25%/ Post 60% How knowledgeable are you in the cognitive development of ages 3-10? Pre 19%/ Post 0% Pre 62%/Post 40% Pre 19%/ Post 60% How knowledgeable are you in the social development of ages 310? Pre 0%/ Post 0% Pre 81%/ Post 40% Pre 19%/ Post 60% How knowledgeable are you in emotional regulation of ages 310? Pre 6%/ Post 0% Pre 63%/ Post 20% Pre 31%/ Post 80% How confident are you in finding/coming up with activities to do with children ages 3-4? Pre 6%/ Post 0% Pre 44%/ Post 27% Pre 50%/ Post 73% How confident are you in finding/coming up with activities to do with children ages 4-5? Pre 0%/ Post 0% Pre 62%/Post 27% Pre 38%/ Post 73% How confident are you in finding/coming up with activities to do with children ages 5-6? Pre 6%/ Post 0% Pre 63%/ Post 27% Pre 31%/ Post 73% How confident are you in Pre 13%/ Post 0% Pre 56%/ Post 20% finding/coming up with activities to do with children ages 6-10? Pre 31%/ Post 75% CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 45 Appendix K Session Four Outcome Data Not Somewhat Very Knowledgeable Knowledgeable Knowledgeable /Confident /Confident /Confident I am not familiar with the term secondary trauma (Question 4 Only) Questions Pre %/Post % Pre %/Post % Pre%/Post% Pre%/Post% How knowledgeable are you on the factors that influence trauma in children/young adults? Pre 13%/ Post 0% Pre 73%/ Post 23% Pre 14%/ Post 77% n/a How knowledgeable are you on recognizing the signs of trauma in children/young adults? Pre 20%/ Post 0% Pre 73%/ Post 23% Pre 7% /Post 77% n/a How knowledgeable are you on the ways to assist a child who experiencing trauma? Pre 40%/ Post 0% Pre 53%/ Post 25% Pre 7%/ Post 75% n/a Are you familiar with the term secondary trauma? If so, how familiar are you with strategies to prevent secondary trauma? Pre 60%/ Post 0% Pre 27%/ Post 15% Pre 0%/ Post 46% Pre 13%/ Post 39% CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 46 Appendix L Session Five Outcome Data Not Somewhat Knowledgeable/ Knowledgeable/ Confident Confident Questions Very Knowledgeable/ Confident Pre %/Post % Pre %/Post % Pre%/Post% Do you feel like you are equipped to answer the "tough questions" that your kids might ask? Pre 0%/ Post 0% Pre 56%/ Post 20% Pre 44%/ Post 80% How knowledgeable are you on developing a plan if your child is using/abusing substances? Pre 0 %/ Post 0% Pre 44%/ Post 13% Pre 56%/ Post 87% How knowledgeable are you on the different parenting styles? Pre 19%/ Post 0% Pre 68%/ Post 40% Pre 13%/ Post 60% How knowledgeable are you on the traits of temperament? Pre 20%/ Post 7% Pre 67%/ Post 33% Pre 13%/ Post 60% CHILD DEVELOPMENT PROGRAM FOR WOMEN AT RECOVERY HOUSE 47 Appendix M Session Six Outcome Data Questions 1. Strongly 2. 3. Disagree Disagree Neutral 4. 5. Agree Strongly Agree This class was relevant to me. 2% 7% 7% 43% 29% This class was interesting to me. 7% 0% 7% 43% 43% This class provided me with knowledge and skills to use in the future. 7% 0% 15% 21% 57% I have utilized what I learned in this class with my own children. 15% 0% 43% 21% 21% I am satisfied with this class. 7% 0% 7% 36% 50%  ...

... Running head: ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 1 Impact of Environmental Cues and Functional Tool Use on the Grasp of Transitioning Infants: A Pilot Study Jennifer Fogo, PhD, OTR, Mika Coffey-Lumpkin, Sydney Denhart, Madison Kovacs, Julie Larson, Shelby Sexton, Ellen Shepherd University of Indianapolis ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 2 Abstract Occupational therapy addresses fine motor skills throughout the lifespan, but there is limited evidence for how understanding a functional tools purpose and the presence of environmental cues impact a transitioning infants grasp pattern. Therefore, the researchers sought to determine if transitioning infants alter grasp on a functional object with the presence of an environmental cue. In a quasi-experimental study of transitioning infants aged 12 to 16 months (N=13), researchers presented a marker to participants with and without the presence of paper to determine the impact of environmental cues on functional tool use and grasp patterns. While trends in data were seen, there are no statistically significant findings as a result of this pilot study. The results confirm a trend in overall right-handed preference for transitioning infants when using a functional tool. On average, the transitioning infants initially make contact with the marker faster, maintain functional use of the marker longer, and utilize a more mature grasp pattern with the presence of an environmental cue. Future research is needed to confirm the impact of environmental cues on the development of transitioning infant grasp patterns. When working with transitioning infants, occupational therapists need to consider all environmental factors that may impact fine motor skills as they relate to functional tool use. ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 3 Impact of Environmental Cues and Functional Tool Use on the Grasp of Transitioning Infants: A Pilot Study Occupational therapists work to increase engagement and participation in occupations throughout the lifespan by improving an individuals body functions and performance skills, altering tasks and activities, or adapting the environment (American Occupational Therapy Association [AOTA], 2014). A primary focus of occupational therapy is to assess and provide intervention for fine motor skills by targeting client factors such as control of voluntary movement and performance skills including gripping, manipulating, and coordinating (AOTA, 2014). Grasp is used in everyday functioning throughout all stages of life for engagement in occupations. By definition, grasp is opening, shaping, and closing the hand on an object based on the features of the object (Thomas, Karl, & Whishaw, 2015). The development of grasp has typically been seen as a sequential pattern (Cronin & Mandich, 2016), originating with an ulnar palmar grasp and progressing to a dynamic tripod by 12 months of age (Butterworth, Verweij, & Hopkins, 1997; Cronin & Mandich, 2016; Sgandurra et al., 2012). External factors, such as object orientation, symmetry, and environmental cues, have been found to influence grasp patterns from infancy to toddlerhood (Barrett & Needham, 2007; McCarty, Clifton, & Collard, 2001). Researchers have examined various factors affecting grasp development in infancy including body scaling (Huang, Ellis, Wagenaar, & Fetters, 2013), visual perception (Berthier & Carrico, 2010), and object orientation (Claxton, McCarty, & Keen, 2009). Prior research has also examined how an infant perceives the functional use of objects (McCarty et al., 2001) but not how understanding the use of a tool impacts the infants choice of grasp pattern. Adults easily perceive affordances and environmental cues, which leads to the use of a variety of functional ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 4 grasp patterns (Huang et al., 2013). The perceived information can be termed body scaling, which is the foundation of functional actions (Huang et al., 2013). Body scaling is using the perceived size and shape of objects to adapt grasp patterns in relation to the size of the infants hand (Huang et al., 2013). Contaldo et al. (2013) reported that by 10 months old, an infant is able to select a correct grasp for an object and plan for future action of a tool. By 13 to 15 months, infants begin performing functional tasks that have been modeled by their environment (Contaldo et al., 2013). However, the extent to which transitioning infants, defined as infants between 12 and 16 months of age, functionally alter grasp patterns due to external, environmental cues remains unknown. For the purpose of this research, a functional tool is an instrument that has a designated purpose to achieve specific task objectives, and an environmental cue is an external factor that provides meaning and stimulates understanding of functional tool use. In this case, the functional tool was a marker, and the environmental cue was paper. Therefore, the purpose of this research was to determine if transitioning infants alter grasp and the functional use of a tool with the presence of an environmental cue. It was hypothesized that transitioning infants would grasp the marker faster and maintain a functional writing position longer, as measured by percent of time the tip of a marker was maintained on a surface, when an environmental cue of paper was present. It was also hypothesized that transitioning infants would utilize more mature and functional grasp patterns with paper present. Because grasp is a crucial component of daily independent occupational performance, infants who experience difficulties with grasp will be delayed in fine motor skills, greatly impacting their ability to engage in developmentally-appropriate activities in all areas of occupations (Libertus, Sheperd, Ross, & Landa, 2014). Early intervention with a focus on fine motor skills has been shown to be effective in establishing proper development throughout ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 5 childhood (Cameron et al., 2012). It is important for occupational therapists to understand all factors that impact functional grasp development for infants. If there are more factors affecting grasp patterns such as the presence of environmental cues, then occupational therapists need to incorporate a multi-faceted approach to fine motor intervention with infants and young children. Literature Review: The Development of Tool Use The purpose of this literature review is to explore research examining grasp development of transitioning infants. Specifically, research will be presented on the development of tool use and the functional use of a tool for typically-developing transitioning infants. Factors contributing to infant grasp patterns, such as tool function, orientation of objects being grasped, and infant visual perceptual skills will be explored to determine the current understanding of the impact of environmental cues on an infants method of grasping an object. Some of the contributing factors include how understanding a tools function, orientation of the tool, and visual perception impact grasp of a tool. Development of Grasp Patterns Gesell (1928) was one of the first researchers to acknowledge that as infants develop foundational grasp patterns, more advanced grasp patterns are able to form and build upon preceding patterns. The most primary form of grasp is the power grasp, which uses the entire hand in a fisted position to manipulate an object (Yakimishyn & Magill-Evans, 2002). According to Park (2006), infants begin grasping objects in their environment around 4 months of age using an ulnar palmar grasp to hold the object; this then progresses to radial palmar grasp. By 6 months, infants begin to demonstrate precision grasp patterns, such as raking and lateral grasp (Frankenburg et al., 1992). As infants get older, their use of power grasps continues to decrease, and the use of precision grasps increases (Butterworth et al., 1997). Around 7 to 9 months of age, ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 6 radial digital grasps begin to emerge (Cronin & Mandich, 2016). The consistent use of a radial grasp with various orientations of tools indicates advanced planning of function and accomplishing a goal (Claxton et al., 2009). By 12 months of age, infants have observed grasping, manipulating, and controlling of a functional tool for at least six months as they are spoon-fed (Barrett, Davis, & Needham, 2007). At this stage, infants have also observed that a radial grasp is the most effective way to hold a spoon to accomplish the goal of transporting food to the mouth (McCarty et al., 1999; McCarty et al., 2001). Twelve-month-old infants are typically able to feed themselves with a spoon (Achard & von Hofsten, 2002), demonstrating that development of fine motor skills at this stage allows functional tool use. As infants age, they are also able to manipulate and use environmental feedback to determine the type of grasp needed to functionally use a tool. McCarty et al. (1999; 2001) found that 14-month-old infants will make corrections in grasp before transporting a spoon to their mouth if it is necessary for the goal to be accomplished. The 14-month-old infants ability to understand the need to make corrections demonstrates the presence of feedback control, as shown by the infants reaching with their preferred hand and making corrections to accomplish the goal (McCarty et al., 1999). Grasp Skill Classifications There are numerous methods to classify grasp patterns, from simple to detailed and complex systems. It may be argued that simple-classification categories of grasp do not include the vast array of grasp patterns utilized on objects of various sizes and shapes. If grasp is only classified in simple methods, misunderstanding of the exact grasp may occur and prehension of tools may not be accurately described (Kamakura, Matsuo, Ishii, Mitsuboshi, & Miura, 1980). ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 7 Kamakura et al. (1980) utilized a detailed classification of grasp that included four major categories, with 14 identified grasp patterns. These grasps included standard power, hook power, index finger extension power, extension power, distal power, lateral, tripod, tripod variations 1 and 2, parallel mild flexion, surrounding mild flexion, tip prehension, parallel extension, and adduction. Other researchers have classified clenched grip, ventral clenched grip, transverse digital radial grip, transverse digital ulnar grip, clenched transverse digital radial grip, clenched transverse digital ulnar grip, transverse palmar radial grip, transverse palmar ulnar grip, interdigital grip, and digital palmar grip (Archard & von Hofsten, 2002; Connolly & Dalgleish, 1989) as observed adult grasp patterns. Yakimishyn and Magill-Evans (2002) combined the developmental progression of pencil grasps, as identified by Schneck and Henderson (1990) and Tseng (1998), to classify grasp patterns into a developmental sequence of prehensile grasps that included 14 types of grasps. Yakimishyn and Magill-Evans (2002) then utilized a five-point scoring system to quantify these grasps based on level of maturity. The grasp patterns consisted of radial cross palmar, palmar supinate, interdigital (variations 1, 2, and 3), digital pronate (only index finger extended), brush, grasp with extended fingers, cross thumb, static tripod, fourfinger, lateral tripod, dynamic tripod, and quadruped (Yakimishyn & Magill-Evans, 2002). Even though some of these grasp patterns are described in literature exploring grasping of infants and children, they are predominantly observed in research describing mature adult grasps. More commonly, researchers have classified grasp patterns with simple-classification methods based on the position of forearm, wrist, palm, and digits in relation to the item being grasped (Schneck & Henderson, 1990; Tseng, 1998). The most basic categories of grasp can be radial or non-radial grasp (McCarty & Keen, 2005), as determined by the objects orientation to the radial side of the hand (Achard & von Hofsten, 2002; Claxton et al., 2009; McCarty et al., ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 8 1999; McCarty et al., 2001). Additional types of grasps in these simple categories include ulnar grasp (Achard & von Hofsten, 2002; Claxton et al., 2009; McCarty et al., 1999; McCarty et al., 2001), digital/fingertip grasp (Claxton et al., 2009; Connolly & Dalgleish, 1989:Keen, Lee, & Adolph, 2014), and goal-end grasp (Claxton et al., 2009; McCarty et al., 1999; McCarty et al., 2001). Researchers have further broken down radial and ulnar grasps into categories such as transverse palmar radial (Archard & von Hofsten, 2002), overhand radial, underhand radial, and overhand ulnar (Keen et al., 2014). Some other types of simple-classification categories include power, intermediate, precision, and adduction grasps (Kamakura et al., 1980); primitive, transitional, and mature grasps (Yakimishyn & Magill-Evans, 2002); flexible and non-functional grasps (Achard & von Hofsten, 2002); or developmental and handwriting (Edwards, Gallen, McCoy-Powlen, & Suarez, 2018). Many of the simple-classification methods are used because researchers agree that while grasp can be broken down further, the more detailed classifications still fall within a smaller number of general grasp categories. Because the purpose of this study was to identify differences in the grasp patterns of transitioning infants, it was important to utilize a grasp classification system that could capture the varied developmental grasps that transitioning infants might use on a writing instrument. Therefore, the researchers used the classification system identified by Edwards et al. (2018), which divides grasp patterns into the primitive developmental grasps and the more mature handwriting grasps (See Table 1). ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 9 Table 1 Classification of Developmental and Handwriting Grasp Patterns Developmental Grasps Reflex Squeeze Crude Palmar Palmar Radial Palmar Raking Grasp Radial Digital Developmental Scissors Inferior Pincer Three Jaw Chuck Pincer Neat Pincer Handwriting Grasps Radial Cross Palmar Palmar Supinate Digital Pronate Brush Grasp Grasp with Extended Fingers Static Quadrupod Cross Thumb Static Tripod Lateral Tripod Dynamic Quadrupod Lateral Quadrupod Dynamic Tripod Interdigital Tripod Orientation and Hand Preference Object orientation is another component to examine when looking at grasp because the way an individual visually perceives the length and shape of an object will influence how he or she grasps the object (Claxton et al., 2009). Researchers in multiple studies alternated between left and right object orientation when presenting objects to the infant in order to control for bias (Barrett et al., 2007; Claxton et al., 2009; McCarty & Keen, 2005; Yakimishyn & Magill-Evans, 2002). Researchers have placed objects in midline in either the upright position or facing toward or away from the infant for a more neutral orientation approach (Achard & von Hofsten, 2002; Fagard & Lockman, 2005). In a study by McCarty, Clifton, and Collard (1999), the 9- and 14month-old infants consistently reached for a spoon in any orientation with their preferred hand. Fagard and Lockman (2005) discussed that although not always consistent at a young age, the majority of infants are right-handed, as most subjects over the age of 12 months used a predominantly right hand strategy across all trials. Claxton et al. (2009) agreed with prior ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 10 research findings that the majority of infants have a right-hand preference, saying that there was a faster preparation when using the right hand in grasp tasks. Cox and Smitsman (2006) found that children under the age of two years old do not tend to use goal-directed information such as the functional use of an object in deciding which hand they will use to grasp an object. In this study the researchers consistently presented the marker in midline to allow for greater variability of grasps for a functional purpose and to decrease bias for hand preference. Visual Perception and Feedback Schneck and Case-Smith (2015) described visual-motor skills as an individuals ability to integrate the visual image of letters or shapes with appropriate motor response (p. 500). Infants use their visual-motor skills to help refine grasp based on visual feedback. Once an infant develops the ability to integrate visual input with the motor skills of reaching and grasping, they can successfully and functionally grasp objects (Dankert, Davies, & Gavin, 2003). Visual perception allows infants to see a tool and purposefully reach for and grasp it (Berthier & Carrico, 2010). The infant does this by using his or her improved vision to create more precise motor movements of the hand (Berthier & Carrico, 2010). With this improved motor precision and understanding of their hand, infants must use their haptic feedback to manipulate their grasp on the functional tool (Berthier & Carrico, 2010). During the late part of the first year of an infants life, refinements with respect to motor planning and use of haptic feedback transform less stable initial grasps into more stable grasps (Barrett & Needham, 2007). Understanding of Function If there is a known function for an object, infants are more likely to grasp the object in a way that is helpful to the execution of the function (Barrett et al., 2007; Claxton et al., 2009; Keen et al., 2014). When knowing the functional use of an object, an infant tends to grasp the ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 11 correct area that enables proper use of a tool, such as the handle of a hairbrush instead of the head of the hairbrush. However, when there is an unknown function or absence of function, an infant will grasp any part of the tool (Claxton et al., 2009). Infants aged 12 to 18 months old who were presented with a spoon tended to grab the handle of the spoon; however, if they were presented with a novel tool that resembled a spoon in appearance, they grasped varying parts of the tool (Barrett et al., 2007). McCarty et al. (2001) used four different objects to determine when infants began to functionally use the tools, representing understanding of function. McCarty et al. (2001) found that at around 14 months of age, infants were more likely to effectively use the tools in the correct functional manner. The researchers also found that infants were more effective in using the tools and performing tasks that were self-directed rather than other-directed or objectdirected (McCarty et al., 2001). Researchers have found that infants as young as 6 to 10 months old recognized object properties and the surface on which the object lies and utilized these properties to adapt their haptic exploration and manipulation of the object (Bourgeious, Khawar, Neal, & Lockman, 2005; Morgante & Keen, 2008). Thirteen-month-old infants obtained objects faster than 11-month-old infants, possibly due to greater ability to understand function as well as having greater motor control (Barrett & Needham, 2007). Functional Tool Use: Crayons Infants tend to begin to make marks on paper with a writing instrument shortly after their first birthday (Bayley, 2006); therefore, it is important to understand the best writing instrument to enhance maturity of grasp development. Morgante and Johnson (2011) found that while 12month-old infants are able to grasp a crayon and show the emergence of object manipulation to influence function, it was more prominent and effective in 18-month-old infants. This shows that ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 12 the understanding of functional objects and grasp develops early and progresses with age. Simple mark-making with a crayon emerges around 12 to 14 months of age, and the progression to line drawing emerges around 15 to 24 months (Dunst & Gorman, 2009). Young children are more interested in colored tools than standard pencils (Yakimishyn & Magill-Evans, 2002). Infants produce larger quantity and better quality of scribbling when there is visual feedback from the utensil (Berefelt, 1987; Dunst & Gorman, 2009). In terms of size of the utensil, standard-sized crayons and magic markers, as opposed to primary-sized, are typically associated with more mature and complex marking (Dunst & Gorman, 2009). A standard-sized marker was used in this study based on the belief that transitioning infants would have experience with markers. Because it only has one functional end, the marker was also used to encourage the infant to use a more purposeful grasp on the marker toward the functional end, as opposed to a crayon that can be used functionally from both ends. Environmental Cues It has been found that infants change the speed in which they reach for an object and the grasp pattern they use to pick up an object based on what they intend to do with the object after retrieving it (Claxton, Keen, & McCarty, 2003). Barrett et al. (2007) found that infants were faster at grasping an object when they understood the function because they were motivated to produce the function. This shows that infants are able to use cognitive planning skills to adjust their grasp patterns based on environmental cues, their perception of the objects properties, and their perception of the objects function. Keen et al. (2014) determined environmental cues changed the way four-year-old children grasped a spoon to accomplish the task of feeding. The four-year-old children used a radial fingertip grip for self-feeding; however, they used an ulnar grip when the feeding task was externally directed, specifically toward a puppet (Keen et al., ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 13 2014). These children modified the grasp based on the environmental cue of the puppet. In the current study, the addition of a piece of paper was similar to the presence of the puppet. Because the impact of environmental cues on functional grasp patterns in transitioning infants is still unclear, research was conducted to determine the change in functional use of a writing instrument with and without the presence of an environmental cue. Methods Study Design The researchers used a quasi-experimental, repeated measures study design to examine the impact of an environmental cue such as paper, on the grasp patterns and functional tool use of transitioning infants. Using this design, the researchers completed two trials with each participating infant. In each trial, the transitioning infant was presented with a marker. However, on the second trial, the primary researcher also supplied the infant with paper to determine if the transitioning infant used a more mature grasp on the marker, grasped the marker quicker, or maintained the marker on the surface longer when paper was provided. Recruitment Procedures Following Human Research Protections Program (HRPP) approval, the researchers distributed informational flyers to daycare facilities in Indianapolis, Indiana. The informational flyer provided a brief description of the study and included researchers contact information. Additionally, a packet of information including the informational flyer, informed consent documents, and a brief questionnaire was given to the guardians of infants who would be between the ages of 12 and 16 months at the time of the study. The researchers were also available during predetermined times at the daycare facilities to provide additional information about the research study and answer any questions. At that time, if guardians wished to include ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 14 their infant in the study, the researcher reviewed the informed consent document with the guardian and obtained consent. Participants Participants included 12- to 16-month-old infants at the time of testing who attended approved daycares in Indianapolis. Infants with a diagnosed developmental delay or who had an injury or impairment affecting the use of their upper extremity were excluded from the study. Procedure/Data Collection The instruments needed to conduct the study included one piece of white 8.5x11 paper per participant, clear tape, and a standard-sized, non-toxic, dried out red marker. Guardians completed a brief questionnaire about their infants experience using a writing instrument such as a crayon, pencil, pen, or marker and to ensure their infant met the inclusion criteria (See Appendix A). On the day of testing, the infants classroom teacher also completed a short questionnaire about the typical writing experiences in the classroom (See Appendix B). An iPad or iPhone encrypted with a passcode was used to record the intervention sessions. Prior to data collection, the principal investigator trained all researchers on the appropriate procedures to conduct the intervention in a consistent and reliable manner. Consistent with past research, the trials took place in the infants daycare classroom to maintain ecological validity (Fagard & Lockman, 2005). This allowed the infant to be in a comfortable, familiar environment where the infant may have previously engaged in the activity of coloring with markers (Fagard & Lockman, 2005). The infant was seated at a child-sized table in the daycare classroom with a primary researcher seated across from the infant throughout both trials. A second researcher was located behind the primary researcher and recorded the session with an ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 15 encrypted iPad or iPhone. In the view of the camera, a label identifying the participant number was included to reduce risk of error during transfer of videos for storage. Video recording began approximately five seconds before initiation of the first trial and continued through the end of the second trial. The primary researcher performing the trials presented an uncapped, non-toxic, dried out marker at the infants midline using a fingertip grasp. Transitioning infants have had minimal experience with this type of grasp (Claxton et al., 2009; Connolly & Dalgleish, 1989); therefore, presenting the marker in this way minimizes the learned effect. As the researcher presented the marker on the table within reaching distance of the infant, the researcher only used the verbal phrase here you go to begin the trial. After the uncapped marker was presented to the participant, the infant was given one minute to make contact with the marker. If the infant did not make any contact with the marker within the first 10 to 15 seconds, the researcher cued the infant by pointing to the marker and repeating the phrase here you go to attempt to initiate the infants grasp of the marker. No more than five cues were used during each trial. Regardless if the infant contacted the marker or not, the researcher removed the marker from the infants hand and visual field after one minute. For the second trial, the primary researcher placed a piece of white 8.5x11 paper directly in front of the infant with clear scotch tape on the top edge of the paper to keep it from sliding. Immediately after the paper was taped down, the primary researcher placed the uncapped, non-toxic, dried out marker used in the first trial in front of the infant using the same procedures and instructions. The trial concluded one minute after the marker was presented. At this time, the primary researcher removed the marker and paper from the infants hand and visual field, and videotaping ceased. ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 16 Data Analysis The primary investigator and four members of the research team viewed the video of both grasping trials of the first participant. The researchers used the video to discuss the correct procedures for documenting the times and grasp patterns throughout each trial on the remaining participants. After the researchers demonstrated understanding and consistency with the documenting process, two researchers were paired and assigned to record each infants precise movements when reaching, grasping, and manipulating the marker. The two researchers independently viewed each infants video in slow motion many times to record the infants precise grasp and manipulation movements second by second. Recording movements second by second allowed the researchers to calculate the duration of each trial; the time from presentation of the marker to the initial grasp on the marker; the time from the initial grasp to the contact of the tip of the marker to the surface (table or paper); and the overall percent of time the infant maintained the tip of the marker on the surface. During this process, the initial grasp was identified as the time at which the infant held the marker in at least one hand and lifted the marker from the surface. Each pair of researchers also described in detail the infants initial grasp on the marker and all alterations of grasp on the marker throughout each trial. They described the grasps by indicating the handedness of the grasp, the grasp location on the marker, and the exact finger and thumb placements on the marker. If the two researchers times and/or descriptions of the grasps differed, then a third researcher reviewed the trial and the researchers discussed the observations until they reached a consensus. After the variables were documented, the principal investigator categorized the initial grasp and the grasp on the marker during the first contact of the tip of the marker to the surface as a developmental grasp or a handwriting grasp based on the descriptions of Edwards et al. (2018). ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 17 Researchers used descriptive statistics to explore the data and report the frequencies of nominal variables, such as hand use and type of grasps, and to calculate the means and standard deviations of continuous variables, including age and all measures of time. Tests of normality indicated that the data were not normally distributed. Therefore, Wilcoxon signed ranks were completed to determine if there was a difference between the time to initial grasp on the marker, the time from initial grasp of marker to tip of marker contact to the surface, and the percent of time the infant maintained the tip of the marker on the surface with and without paper. Researchers completed secondary analyses of Spearmans rho to determine any correlations between the variables. Results Guardian and Teacher Reports Guardians reported their infant used markers or crayons at home typically one to two days per week. Additionally, most guardians reported that their infant observed use of writing utensils in the home on a daily basis. Teachers of older transitioning infants (14-16 months) reported using markers or crayons in the classroom three to four days per week, whereas teachers of younger transitioning infants (11-13 months) reported using markers and crayons in the classroom one to two days per week. A majority of teachers indicated they use techniques of demonstration and hand over hand when the infants use writing utensils in the classroom. Grasping Trials The researchers recruited 20 transitioning infants for this study. Seven participants were eliminated if they did not come to the table, grasp the marker, or bring the marker to the surface in either trial (See Figure 1). The remaining 13 infants ranged in age from 12 to 16 months old, with an average age of 13.92 months. Two infants did not bring the marker to surface in one ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 18 trial; because of this, researchers completed data analyses with a sample size of 13 or 11 participants, determined by the infants actions during the trials. Figure 1. Flow chart depicting elimination of participants. Throughout all trials, 18 initial grasps were with the right hand, five initial grasps were with the left hand, and three initial grasps were with both hands. During each trial, the infants frequently changed grasp patterns on the marker, alternating between using the right, left, or both hands to ultimately manipulate the marker into a purposeful grasp and bring it to the surface. This occurred with final grasp using their right hand 18 times and left hand four times. There were no instances when the infants used both hands to bring the marker to the surface. The infants also demonstrated an increased use of a mature, handwriting grasp with the presence of environmental cue of paper. Regardless of the presence of paper or not, the infants consistently used a more mature, handwriting grasp when bringing the marker to contact the surface (See Table 2). ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 19 Table 2 Frequency of Grasp Patterns With and Without Environmental Cue Initial Grasp Developmental Handwriting Without Paper 9 4 With Paper 4 8 Without Paper 4 7 With Paper 2 9 Grasp when Contacting Surface Developmental Handwriting The resulting continuous variables associated with time were not normally distributed. Therefore, the researchers completed a Wilcoxon signed-rank analysis based on mean ranks to determine if there was a difference between the time the infants initially grasped the marker, between the time of initial grasp of the marker to the time of marker contact to the surface, and between the percent of time the infants maintained the tip of the marker on the writing surface with and without the environmental cue of the paper. Respectively, the results indicated Z= 1.55, Z= -1.69 and Z= -1.27, none of which were significant at p =.05. Although not statistically significant, when reviewing the means of the continuous variables associated with time, the infants initiated grasp on the marker quicker when paper was present than without paper (See Table 3). The infants also brought the marker to the table quicker and maintained the marker in a functional position longer when paper was present. Table 3 Mean Performance of Transitioning Infants With and Without Environmental Cue Without Paper Time to initial grasp no paper (N=13) M = 4.72 SD =6.68 Time to bring marker to surface (N=11) M = 11.74 SD =14.44 Percent of time marker on surface (N=11) M = 27.44 SD =29.75 ENVIRONMENTAL CUES IN TRANSITIONING INFANTS With Paper M = 2.27 SD =1.74 M = 5.02 SD =7.92 20 M = 40.30 SD =29.36 Discussion The researchers sought to determine if transitioning infants demonstrate a more purposeful and mature grasp on a functional tool (marker), increase the speed of initial grasp, and maintain a purposeful use of the tool longer when provided with an environmental cue, such as a piece of paper. Although the results indicate no statistical difference between the use of the functional tool with the presence of the environmental cue, trends were observed. Consistent with past research, the researchers found that the transitioning infants preferred their right hand to initially grasp the marker and bring the marker to the surface (Claxton et al., 2009; Fagard & Lockman, 2005). Also, a greater number of transitioning infants demonstrated a more mature, handwriting initial grasp on the marker with paper as compared to without paper. This is consistent with the findings of Contaldo et al. (2013), who reported that infants use appropriate grasps on tools and alter grasps according to the function of the tool. It is possible that the infants in this study used a more mature grasp with the presence of paper because it provided a cue that helped the infants better understand the purpose of the marker. In addition, based on the mean times, the transitioning infants grasped the marker quicker and maintained contact with the surface longer when an environmental cue was present compared to without. The small sample size may have limited the ability to find statistical significance. Researchers have found that infants grasp patterns on tools are dictated by their perception of tool properties, the intended goal of tools, and their prior experience with tools (Barrett et al., 2007). When infants have more exposure to tool use, they demonstrate more functional grasp patterns because they have a better understanding of the purpose of the tool (Barrett et al., 2007). More often than not, infants are ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 21 exposed to writing with a marker on paper. More research needs to be done to determine if the environmental cue of paper adds to infants understanding of the tool because it is associated with prior exposure to writing with a marker. Researchers could also examine the impact of experience with markers combined with paper on infants functional grasp and use of the marker. McCarty et al. (1999) found that 14-month-old infants corrected grasp patterns on a functional tool, a spoon, to accomplish the specific goal of bringing food to the mouth. Similarly, the majority of infants in the current study demonstrated alterations in grasp to a handwriting grasp when bringing the marker to the surface, both with and without the paper. Interestingly, the researchers also observed when the infants manipulated the marker, they consistently moved the marker with one or both hands to manipulate it into a more functional, handwriting grasp in order to bring the marker to the surface. This was beyond the scope of this pilot study. However, future research could explore the number and variety of manipulations to determine if infants exhibit less alterations of grasp patterns with the presence of paper. Limitations The current study had several limitations that impacted the overall results. The power and the generalizability of the results were impacted by the small, convenience sample. Participants were tested in a familiar environment to maintain ecological validity; however, within the classroom setting, there were a large number of environmental distractions including other infants, activities, and teachers. The environmental distractions provided decreased attention to task during testing for some of the transitioning infants and may have impacted time to contact results. Additionally, several teachers gave verbal cues to the infants during the trials despite researchers providing an explanation of the methods prior to testing. Verbal cues from teachers included pick up the marker and color on the paper, which impacted the ecological validity ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 22 and biased the infants to perform the task in a specific manner. The researchers attempted to decrease visual feedback; however, due to the marker not being fully dried out during all trials, minimal visual feedback occurred when contact of the marker was made with the surface. The visual feedback may have impacted the length of time the infant maintained the marker on the surface. This effect was minimized because each infant was presented the same marker for both trials and thus received visual feedback in each trial. Due to the variations in infant personalities, not all infants were comfortable with researchers during testing. Although questionnaires were used to collect some preliminary data on the infants experience with markers, the accuracy of answers provided by the guardian and teacher report cannot be confirmed. Conclusion The results of this pilot study were statistically inconclusive. The observed trends, however, support the need for more empirical research with a larger, more representative sample to determine the precise impact of environmental cues on functional tool use. Much of the research to date has explored infants functional use of tools such as a spoon (Barrett et al., 2007; Claxton et al., 2009; Connolly & Dalgleish, 1989; McCarty et al., 2001), but limited research has been done to examine infants functional use of writing instruments, such as crayons or markers. Despite limited understanding of transitioning infants knowledge of the function of writing instruments, handwriting is a primary focus for occupational therapists working with children. Researchers have found that environmental cues have been related to increased functional tool use with a spoon (McCarty et al., 2001). Researchers have also found that indirect experience, such as observing spoon use and direct experience, such as being taught appropriate grasp resulted in infants using functional grasp patterns more consistently on the spoon (Barrett et al., 2007). It is difficult to know how much indirect or direct experience transitioning infants have ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 23 with writing instruments today, especially with the increased use of technology. It is also difficult to determine the frequency in which early childhood educators or guardians guide transitioning infants to using a more mature grasp on writing instruments. Future research needs to be done to explore the impact of all environmental cues, as well as the impact of indirect and direct experiences on transitioning infants functional use of writing instruments. Occupational therapists can use this information to enhance early intervention, which may have a future impact on handwriting development. ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 24 References Achard, B., & von Hofsten, C. (2002). Development of the infant's ability to retrieve food through a slit. Infant and Child Development, 11(1), 43-56. doi:10.1002/icd.235 American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. doi: 10.5014/ajot.2014.682006 Barrett, T. M., Davis, E. F., & Needham, A. (2007). Learning about tools in infancy. Developmental Psychology, 43(2), 352-368. doi:10.1037/0012-1649.43.2.352 Barrett, T. M., & Needham, A. (2007). Developmental differences in infants use of an objects shape to grasp it securely. Developmental Psychobiology, 50(1), 97-106. doi:10.1002/dev.20280 Bayley, N. (2006). Bayley Scales of Infant and Toddler Development (3rd ed.). San Antonio, TX: Psychological Corporation. doi:10.1177/0734282906297199 Berefelt, G. (1987). Sex differences in scribbles of toddlers: Graphic activity of 18-month-old children. Scandinavian Journal of Educational Research, 31(1), 23-30. doi:10.1080/0031383870310102 Berthier, N. E., & Carrico, R. L. (2010). Visual information and object size in infant reaching. Infant Behavior and Development, 33(4), 555-566. doi:10.1016/j.infbeh.2010.07.007 Bourgeois, K. S., Khawar, A. W., Neal, S. A., & Lockman, J. J. (2005). Infant manual exploration of objects, surfaces, and their interrelations. Infancy, 8, 233252. doi:10.1207/s15327078in08033 ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 25 Butterworth, G., Verweij, E., & Hopkins, B. (1997). The development of prehension in infants: Halverson revisited. British Journal of Developmental Psychology,15(2), 223-236. doi:10.1111/j.2044-835x.1997.tb00736.x Cameron, C. E., Brock, L. L., Murrah, W. M., Bell, L. H., Worzalla, S. L., Grissmer, D., & Morrison, F. J. (2012). Fine motor skills and executive function both contribute to kindergarten achievement. Child Development, 83(4), 1229-1244. doi:10.1111/j.14678624.2012.01768.x Claxton, L. J., Keen, R., & McCarty, M. E. (2003). Evidence of motor planning in infant reaching behavior. Psychological Science, 14(4), 354-356. doi:10.1111/1467-9280.24421 Claxton, L. J., McCarty, M. E., & Keen, R. (2009). Self-directed action affects planning in tooluse tasks with toddlers. Infant Behavior Development, 32(2), 230-233. doi:10.1016/j.infbeh.2008.12.004 Connolly, K., & Dalgleish, M. (1989). The emergence of a tool-using skill in infancy. Developmental Psychology, 25(6), 894-912. doi:10.1037/0012-1649.25.6.894 Contaldo, A., Cola, E., Minichilli, F., Crecchi, A., Carboncini, M. C., Rossi, B., & Bonfiglio, L. (2013). Object use affects motor planning in infant prehension. Human Movement Science, 32(3), 498-510. doi:10.1016/j.humov.2013.02.005 Cox, R. F. A., & Smitsman, A. W. (2006). Action planning in young childrens tool use. Developmental Science, 9(6), 628-641. doi:10.1111/j.1467-7687.2006.00541.x Cronin, A., & Mandich, M. (2016). Human development and performance throughout the lifespan (2nd ed.). Boston, MA: Cengage Learning. ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 26 Dankert, H. L., Davies, P. L., & Gavin, W. J. (2003). Occupational therapy effects on visualmotor skills in preschool children. American Journal Occupational Therapy, 57(5), 542549. doi:10.5014/ajot.57.5.542 Dunst, C. J., & Gorman, E. (2009). Development of infant and toddler mark making and scribbling. Center for Early Literacy Learning, 2(2), 1-16. doi:10.1.1.662.1578 Edwards, S. J., Gallen, D. B., McCoy-Powlen, J. & Suarez, M. A. (2018). Hand grasps and manipulation skills: Clinical perspective of development and function (2nd ed.). Thorofare, NJ: SLACK Incorporated. Fagard, J., & Lockman, J. J. (2005). The effect of task constraints on infants (bi)manual strategy for grasping and exploring objects. Infant Behavior & Development, 28, 305-315. doi:10.10l6/j.infbeh.2005.05.005 Frankenburg, W. K., Dodds, J., Archer, P., Bresnick, B., Maschka, P., Edelman, N., & Shapiro, H. (1992). Denver II: Training manual. Denver, CO: Denver Developmental Materials, Incorporated. Gesell, A. (1928). Infancy and human growth. New York, NY: MacMillan. doi:10.1037/14664000 Huang, H. H., Ellis, T. D., Wagenaar, R. C., & Fetters, L. (2013). The impact of body-scaled information on reaching. Physical Therapy, 93(1), 41-49. doi:10.2522/ptj.20110467 Kamakura, N., Matsuo, M., Ishii, H., Mitsuboshi, F., & Miura, Y. (1980). Patterns of static prehension in normal hands. American Journal of Occupational Therapy, 34, 437-445. doi:10.5014/ajot.34.7.437 Keen, R., Lee, M. H., & Adolph, K. (2014). Planning an action: A developmental progression in tool use. Ecological Psychology, 26, 98-108. doi:10.1080/10407413.2014.874917 ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 27 Libertus, K., Sheperd, K. A., Ross, S. W., & Landa, R. J. (2014). Limited fine motor and grasping skills in 6-month-old infants at high risk for autism. Child Development, 85(6), 2218-2231. doi:10.1111/cdev.12262 McCarty, M. E., Clifton, R. K., & Collard, R. R. (1999). Problem solving in infancy: The emergence of an action plan. Developmental Psychology, 35(4), 1091-1101. doi:10.1037/0012-1649.35.4.1091 McCarty, M. E., Clifton, R. K., & Collard, R. R. (2001). The beginnings of tool use by infants and toddlers. Infancy, 2(2), 233-256. doi:10.1207/S15327078IN0202_8 McCarty, M. E., & Keen, R. (2005). Facilitating problem-solving performance among 9- and 12month-old infants. Journal of Cognition and Development, 6(2), 209-228. doi:10.1207/s15327647jcd0602_3 Morgante, J. D., & Keen, R. (2008). Vision and action: The effect of visual feedback on infants exploratory behaviors. Infant Behavior and Development, 31, 729733. doi:10.1016/j.infbeh.2008.04.007 Morgante, J. D., & Johnson, S. P. (2011). Infants perception of object-surface interplays. British Journal of Developmental Psychology, 29, 999-1005. doi:10.1111/j.2044835X.2011.02049.x Park, S. (2006). Inside HELP administration and reference manual for HELP (the Hawaii Early Learning Profile): Birth-3 years. Palo Alto, CA: VORT Corporation. Schneck, C. M., & Case-Smith, J. (2015). Prewriting and handwriting skills. In J. Case-Smith, & J. C. OBrien (Eds.), Occupational therapy for children and adolescents (7th ed., pp. 498524). St. Louis, MO: Mosby. ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 28 Schneck, C. M., & Henderson, A. (1990). Descriptive analysis of the developmental progression of grip position for pencil and crayon in nondysfunctional children. American Journal of Occupational Therapy, 44(10), 893900. doi:10.5014/ajot.44.10.893 Sgandurra, G., Cecchi, F., Serio, S. M., Del Maestro, M., Laschi, C., Dario, P., & Cioni, G. (2012). Longitudinal study of unimanual actions and grasping forces during infancy. Infant Behavior and Development, 35, 205-214. doi:10.1016/j.infbeh.2012.01.003 Thomas, B. L., Karl, J. M., & Whishaw, I. Q. (2015). Independent development of the reach and the grasp in spontaneous self-touching by human infants in the first 6 months. Frontiers in Psychology, 5, 1-11. doi:10.3389/fpsyg.2014.01526 Tseng, M. H. (1998). Development of pencil grip position in preschool children. Occupational Therapy Journal of Research, 18(4), 207224. doi:10.1177/153944929801800406 Yakimishyn, J. E., & Magill-Evans, J. (2002). Comparisons among tools, surface orientation, and pencil grasp for children 23 months of age. American Journal of Occupational Therapy, 56(5), 564-572. doi:10.5014/ajot.56.5.564 ENVIRONMENTAL CUES IN TRANSITIONING INFANTS 29 Appendix A Demographic Questionnaire for Parents Childs Name:___________________________________ Childs Date of Birth:___________________ Daycare Facility and Room (Class Name): _________________________________ Does your child have an identified diagnosis resulting in developmental delays? Yes No Does your child have experience at home with using markers or crayons for coloring? Yes No If yes, approximately what age did he/she first start playing with crayons or markers? __ Approximately how often does your child currently use markers and/or crayons at home? Daily 5-6 days per week 3-4 days per week 1-2 days per week In the last week, approximately how often has your child observed individuals writing or coloring at home? Daily 5-6 days per week 3-4 days per week 1-2 days per week ENVIRONMENTAL CUES IN TRANSITIONING INFANTS Appendix B Demographic Questionnaire for Daycare Teachers To be completed by Researchers: Classroom Name: _________________________ Day of Testing: __________ Tested Participant Numbers: _______________________________________________ ____________________________________________________________________________ To be completed by teachers: On average, how many times each week do the children in your classroom participate in activities that utilize crayons or markers? Daily 3-4 days per week 1-2 days per week Do you demonstrate how to use a crayon or marker when they are used for activities? Yes No Do you ever use a hand-over-hand technique with the children, to help them use the crayon or marker? Yes No 30  ...

... "It Takes a Village to Get Through Cancer, A Photo-Elicitation Study Exploring Lived Experiences of Community Cancer Survivors Gabrielle Ingram, Tamzyn Mather, Amy Ragle, Nicole Scholl, & Taylor Welch Katie M. Polo, DHS, OTR, CLT-LANA December 13, 2019 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Dr. Katie Polo, Associate Professor A Research Project Entitled "It Takes a Village to Get Through Cancer, A Photo-Elicitation Study Exploring Lived Experiences of Community Cancer Survivors Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Gabrielle Ingram, Tamzyn Mather, Amy Ragle, Nicole Scholl, & Taylor Welch Doctor of Occupational Therapy Students Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER "It Takes a Village to Get Through Cancer, A Photo-Elicitation Study Exploring Lived Experiences of Community Cancer Survivors Gabrielle Ingram, Tamzyn Mather, Amy Ragle, Nicole Scholl, Taylor Welch, and Katie M. Polo, DHS, OTR, CLT-LANA University of Indianapolis 1 Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 2 Abstract Introduction: Cancer survivors continue to experience complications that last months to years following diagnosis and treatment which can impact daily life. The purpose of this study was to explore the lived experiences of adult community cancer survivors related to daily activities and occupational performance. Methods: Phenomenology study design and photo elicitation, types of qualitative visual methodology were utilized to blend photos and words from survivors. Thirteen adult cancer survivors were recruited for this study at a community-based cancer support organization in central Indiana. Open coding, axial coding and constant comparative analysis approach was utilized to achieve trustworthiness and conceptual saturation. Result: Investigators identified that participants experienced a shift in cultural context, wherein they took on a new context defined by their cancer survivorship. This shift of cultural context is dynamic, inter-related, and ultimately paralleled by the experiences of the researcher identified themes, of distress, changes in perspective, client factors, and in occupational performance. The themes of distress, changes in perspectives and client factors dynamically influenced occupational performance and engagement. Conclusion: In order for occupational therapists to provide client-centered, holistic, and evidence-based practice into cancer survivorship care, occupational therapists need to understand the unique changes in roles, routines, and occupations and consider how this cultural context shift, along with distress, changes in survivors perspective, and client factors, lead to changes in occupational performance. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 3 "It Takes a Village to Get Through Cancer, A Photo-Elicitation Study Exploring Lived Experiences of Community Cancer Survivors Life expectancy and remission rates have increased, and as a result, two out of every three people diagnosed with cancer are expected to live for at least five years after initial diagnosis (Bluethmann, Mariotto, & Rowland, 2017; National Cancer Institute, 2019). According to the National Cancer Institute (2019), 16.9 million cancer survivors are living in the United States today. Due to these changes in life expectancy, the definition of a cancer survivor has evolved to a person living with cancer from initial diagnosis to the end of life (CDC, 2017; National Coalition of Cancer Survivorship, 2014). Cancer survivorship is an emerging area of practice within occupational therapy, as survivors are often left with lingering complications that may pose challenges when engaging in meaningful activities in everyday life (Baxter, Newman, Longpr, & Polo, 2017). The side effects of cancer can last months or years after treatment ends; therefore, cancer is now being considered a chronic condition (Baxter et al., 2017; Peoples, Brandt, Whrens & la Cour, 2017; Hwang, 2015; Lyons, Lambert, Balan, Hegel, & Bartels, 2013). A systematic review found that 36.7%-54.6% of cancer survivors reported having disabilities related to performance in basic and instrumental activities of daily living (ADLs) after cancer treatments (Neo Fettes, Gao, Higginson, & Maddocks, 2017). Occupational therapy practitioners provide intervention strategies and individualized care for cancer survivors to help combat the impact of late side effects, improve occupational performance, and enhance quality of life (Braveman, Hunter, Nicholson, Arbesman, & Lieberman, 2017; Polo & Smith, 2017). In order to meet the needs of this growing population, it is necessary to first understand survivors feelings, thoughts, and perceptions regarding their Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 4 journey. The purpose of this study was to understand the lived experiences of adult cancer survivors living in the community and how their occupational performance was impacted by cancer. Literature Review Fatigue Cancer-related fatigue (CRF) is a distressing, persistent, subjective sense of tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning (National Comprehensive Cancer Network, 2014, p.FT-1). Cancer-related fatigue differs from other forms of fatigue, as it is brought on by or experienced as a result of cancer. The fatigue is constant and not alleviated by sleep or rest and can influence ones ability to perform daily activities (American Cancer Society, 2016a; Iwase et al., 2015; Hall, Mishel & Germino, 2014). Survivors have been found to reduce or change participation in occupations within multiple studies in which CRF was the primary cause for lifestyle alterations (Dorland et al., 2016; Lyons et al., 2013; Morrison & Thomas, 2014). A cancer survivors reduction in occupational participation has negative impacts on various areas of the person's life. Sexual activity is one area of occupational performance that is at risk for reduced participation of the cancer survivor due to the negative impacts of CRF (Bober et al., 2013; Hopkins et al., 2015). Cancer-related fatigue also creates issues related to participation in leisure activities. Shipp, McKinstry, and Pearson (2013) and Sleight (2017) identified disruption to normal leisure patterns of cancer survivorssurvivors felt the need to alter or cease engagement in their usual leisure occupations and engage in more passive activities because of low energy levels. A cancer survivors lack of participation in these areas can have significant impacts on quality of life (Holm et al., 2012; Peoples et al., 2017). Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 5 In addition to reduced participation in sexual activity and other leisure activities, individuals who experience CRF reported increased difficulty participating in social occupations (Curt et al., 2000). There is strong evidence that the social lives of survivors are negatively affected due to poor endurance and cognitive changes (Hall et al., 2010; Hopkins et al., 2015; Peoples et al., 2017). Social interactions were a cause of stress for individuals experiencing CRF as a result of the unpredictable impacts of the fatiguesurvivors have voiced concerns about not knowing when it would occur or how it would affect their mood, ultimately inhibiting their motivation to engage in interactions with others (Fleming, Gillespie & Epsie, 2010; Myers, 2012; Peoples et al., 2017). Furthermore, effects of CRF on mood and motivation create a misunderstanding by friends and family members when attempting to understand why survivors seemed different from their pre-cancer selves (Von Ah, Habermann, Carpenter & Schneider, 2013; Fleming et al., 2010; Peoples et al., 2017). The effects of CRF are not localized to only physical energy and driveit affects a variety of other contexts and occupations, as well (Curt et al., 2000; Morrison & Thomas, 2014). Fatigue can significantly impact employment, as employers require both physical and mental endurance (Dorland et al., 2016; Mackenzie, 2014; Morrison & Thomas, 2014). Cancer-related fatigue is one of the main reasons that cancer survivors decide to take a leave of absence or delay their return to work post-treatment (Groeneveld, de Boer & Frings-Dresen, 2013; Morrison & Thomas, 2014). Some survivors reported benefits from returning to work due to the sense of normalcy and routine it provided them; however, other survivors expressed the need to reduce their work hours to cope with their diagnosis (Dorland et al., 2016). Cancer-related fatigue can reduce a survivor's energy to work physically, and it slows down cognitive processes that are necessary for the workplace (Todd, Feuerstein & Feuerstein., 2011). Returning to work is Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 6 multifactorial and is influenced by more than just a diagnosis (Dorland et al., 2016; Mackenzie, 2014; Morrison & Thomas, 2014). Cognitive Deficits Cognitive deficits are among the most frequently documented symptoms experienced during cancer survivorship (Boykoff, Moieni & Subramanian, 2009; Morrison & Thomas, 2014; Von Ah et al., 2013). Cancer survivors have identified some of the cognitive impairments experienced as deficits in memory, attention, and ability to think clearly (Duijts et al., 2014; Myers, 2012; Von Ah et al., 2013). These issues occur during treatment and remain present after treatment for up to three to 10 years (Harrington et al., 2010; Von Ah et al., 2013). Researchers have classified this side effect as "invisible" and one of which the general population is not aware (Dorland et al., 2016). Cancer survivors have reported feelings of frustration and emotional distress due to the unexpected occurrence of this symptom (Boykoff, Moieni & Subramanian, 2009). Cognitive impairments significantly impact occupational performance, creating obstacles for survivors when attempting to engage in ADLs and their routines as they did before diagnosis (Calvio et al., 2010; Todd, Feuerstein, & Feuerstein, 2011; Von Ah et al., 2013). Impaired cognitive performance influences the ability to manage responsibilities, such as driving, making payments on bills, cooking, doing chores, and remembering to shut off ovens or lights throughout the house (Grov, Fossa & Dahl, 2010; Myers, 2012; Peoples et al., 2017). Cognitive impairments also impact social participation and employment. Survivors have difficulty engaging in social interaction with others due to the cognitive demands of conversation, including word finding and memory (Myers, 2012; Boykoff et al., 2009; Von Ah et al., 2013). Such deficits led to disengagement in social participation, as survivors reported Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 7 feeling embarrassed or frustrated when cognitive issues disrupted their interactions (Boykoff et al., 2009; Von Ah et al., 2013). Other cognitive deficits, mainly flaws in memory and attention, are a prevalent experience of cancer survivors in the workplace due to the impact of these deficits on work performance (Groeneveld et al., 2012). For example, compromised attention impacts ones ability to perform his or her job as efficiently as was done before diagnosis (Duijts et al., 2014; Von Ah et al., 2013). Survivors described instances where they were unable to cope with the demands of previous work tasks due to cognitive issues, which led them to either quit or seek early retirement (Calvio et al., 2010; Duijts et al., 2014; Fleming, Gillespie, & Espie, 2010). Survivors identified a combination of cognitive issues and CRF cause deficits in occupational performance (Curt et al., 2000; Myers, 2012; Steirner et al., 2008). Cancer-related fatigue has an adverse impact directly and indirectly on the mental functioning of cancer survivors, which results in decreased occupational participation in areas including education, employment, and social interactions (Curt et al., 2000; Groeneveld de Boer & Frings-Dresen, 2013). Psychosocial Changes According to the American Cancer Society (2015), one in four people who are diagnosed with cancer experience clinical depression during and after treatment. Depression is brought on by the fear of body changes, as well as worrying about passing cancer along to future children (Robinson, Miedema & Easley, 2014; Sadovsky et al., 2010). Psychosocial factors, along with other late effects of cancer, can lead to difficulty of cancer survivors engaging in meaningful occupations, including sexual activity and social interactions (Baxter et al., 2017; Frumovitz et al., 2005). Klaeson, Sandell, and Berter, (2013) along with Robinson et al., (2014) and Sadovsky et al., (2010) have found that cancer survivors Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 8 who experience changes in body image or changes in masculinity or femininity struggled with low self-esteem and lacked the motivation to engage in sexual activity. These bodily changes include hair loss, weight gain, scars, and changes in body shape (Robinson et al., 2014). Social participation is negatively affected by the lack of drive and low self-esteem in cancer survivors (Frumovitz et al., 2005; Klaeson et al., 2013; Robinson et al., 2014). Men purposely avoided social interactions when they experienced changes in their masculinity, while women avoided these situations when they were experiencing low self-esteem (Boykoff et al., 2009; Klaeson et al., 2013; Robinson et al., 2014). The lack of motivation to socialize was also due to other people not understanding what the cancer survivors were going through (Boykoff et al., 2009; Fleming et al., 2010; Von Ah et al., 2013). This lack of empathy affected the way survivors interacted with others and engaged in social occupations. Work participation is negatively impacted by psychosocial factors, as survivors struggle to find support from family members, co-workers, and management that is necessary in order to be successful after returning to work (Duijts et al., 2014). Changes upon returning to work often include being assigned fewer or more simplified responsibilities, as well as changed attitudes of peers toward the survivors performance in the workplace (Duijts et al., 2014; Stein, Syrjala, & Andrykowski, 2008). These changes can negatively impact a survivors self-esteem and increase stress related to returning to work (Asher, 2011; Duijts et al., 2012; Steiner et al., 2008). Survivorship Needs Cancer survivors feel uneducated by healthcare professionals regarding potential side effects of cancer treatment that can have significant influences on occupational performance (Klaeson et al., 2013; Morrison & Thomas, 2014; Von Ah et al., 2013). Healthcare professionals tend to minimize client concerns when they attribute symptoms to age and other factors, leaving Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 9 patients uninformed about what to expect (Boykoff et al., 2009; Von Ah et al., 2013). Even when healthcare professionals addressed concerns, survivors stated that they felt uneducated regarding potential side effects, as well as when to apply adaptive treatment and coping methods (Klaeson et al., 2013; Morrison & Thomas, 2014; Peoples et al., 2017). This lack of guidance leads to survivors attempting to create self-coping strategies to overcome limitations that prevent them from functional occupational performance (Koch et al., 2013; Morrison & Thomas, 2014; Peoples et al., 2017). These reported inconsistencies regarding the information provided to survivors explain the poor transition between ongoing treatment and post-treatment experiences of cancer survivors (Baxter et al., 2017; Koch et al., 2013; Peoples et al., 2017). Available literature about cancer survivorship and occupational performance has justified the concerns that survivors have regarding their symptoms. Reportedly, side effects, such as fatigue, sexual dysfunction, depression, anxiety, and cognitive deficits are present and can last up to three to ten years post-treatment (Harrington et al.,2010; Klaeson et al., 2013; Von Ah et al., 2013). Healthcare professionals should acknowledge the side effects that cancer survivors experience and look further into these issues in order to alleviate or accommodate for problems (Grov et al., 2010; Harrington et al., 2010; Koch et al., 2013). No studies have collectively explored the lived experiences of cancer survivors with varying cancer diagnoses. The purpose of the study was to explore the lived experiences of adult cancer survivors living in the community related to their daily activities and occupational performance. Significance Being able to engage in meaningful occupations is essential to one's identity. (Morrison & Thomas, 2014). As demonstrated in the literature, the onset of late side effects from cancer limits ones occupational performance and can be detrimental to their quality of life (Hwang et al., Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 10 2015; Iwase et al., 2015; Koch et al., 2013). The challenge related to finding satisfaction in leisure and social activities due to CRF may prevent an individual from reaching maximum potential (Sleight, 2017). When a person is not able to engage in leisure and social activities to the extent to which they were once able, feelings of depression and anxiety may occur (Fong, Scarapicchia, McDonough, Wrosch, & Sabiston, 2017; Yonemoto et al., 2016). The anxiety and depression experienced may then prevent further engagement or cause hesitation in participating in meaningful occupations (Duijts et al., 2014). Detecting occupational deficits and addressing these concerns by an occupational therapist can help improve the quality of life of cancer survivors. Occupational therapists can assist in identifying difficulties caused by the late side effects of cancer and provide clientcentered care and interventions to overcome these roadblocks (AOTA, 2014; Polo & Smith, 2017). Occupational therapy is an underused resource when it comes to cancer survivorship, where only 32% of survivors used occupational therapy services (Pergolotti, Cutchin, Weinberger, & Meyer, 2014). Occupational therapy services can improve the quality of life, not only by providing intervention and treatment, but also by providing knowledge on how the late side effects impact the survivor and their occupational performance (AOTA, 2014; Polo & Smith, 2017). By raising awareness about what to potentially expect during cancer survivorship, cancer survivors can take preventative measures to avoid the inability to participate in meaningful and necessary occupations throughout their life. Methodology Study Design In order to gain the perspective of cancer survivors living in the community, we used a phenomenology study design and photo elicitation, a type of qualitative visual methodology. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 11 Photo-elicitation is a method that uses photographs to elicit verbal discussion in focus groups and elicits feelings, memories, and information from individuals (Glaw, Kable, Hazelton & Inder, 2017). By using this method, researchers can identify different layers of meaning and allow for triangulation between different information sources (Glaw, Kable, Hazelton & Inder, 2017). Photo-elicitation is becoming more widely used in various disciplines and is an effective and acceptable method for qualitative research (Pain, 2012). Procedures to address trustworthiness and credibility Krefting (1991) suggests rigor of qualitative data can be established by implementing more than one of the four qualitative criteria for trustworthiness which include: credibility, transferability, dependability and confirmability into the study design. Creswell and Poth (2017) recommend qualitative researchers engage in at least two of these validation strategies in any given study. The researchers of this study used several strategies to support the trustworthiness within each of the criteria by implementing triangulation, reflexivity, and the use of an audit trail throughout the process. Triangulation of data methods. Various sources of data were used during the study including demographic surveys, participant captured photographs, audio recordings, transcriptions, and field notes from focus group discussions. The researchers cross-referenced the various data sources throughout the research process, allowing the identification of patterns and recurring themes that reinforced the findings and limited bias to ensure the perspectives of the participants were accurately captured (Fusch, Fusch, & Ness, 2018; Morse, 1990). Reflexivity. Researchers engaged in reflexive thinking during the research process by considering how their biases and past experiences may impact their understanding of the data (Creswell & Poth, 2018). Researchers had discussions and debriefings following focus groups to Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 12 ensure participants comments were interpreted as intended. A total of four focus groups took place over three weeks, allowing for the opportunity for researchers to collaborate and reflect over data collected and interview tactics used. Further ensuring reflexivity, at least two researchers were present for each focus group. Member checking. Researchers completed member checking throughout the interview process to increase the credibility of findings and interpretations of this study (Creswell, 2013). Member checking is a technique that involves establishing the truth of the findings by sharing either a portion of the research findings, or the entire findings with the research participants (Krefting, 1991). This took place by researchers restating and summarizing information and then questioning the participants to determine accuracy during all focus groups. Researchers applied this in individual groups and across all focus groups to increase the credibility and transferability of the study results. Audit trail. An audit trail began upon development of the study in order to increase dependability and confirmability from the start (Krefting, 1991). Authors kept all raw data throughout the development of the findings as suggested by the six Halpern audit trail categories (Halpern, 1983). Raw data included initial coding, theme development, process notes, preliminary forms, and surveys. Overall, intentional implementation of various strategies that warrant trustworthiness and credibility of the study adds to the merit of our findings. Memoing. Memoing procedures were used for reflective notes in formulating the process researchers used to develop the final themes and logic diagram depiction (See Appendix C) with organizing the data (Creswell & Poth, 2017, p. 84). This process of researcher driven memoing adds to the trustworthiness and credibility of this research as it provides a record of the meanings derived from the data and logic diagram depiction. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 13 Participants Once receiving approval from the University of Indianapolis Human Research Protection Program (HRPP), researchers of this study used purposive sampling methods for participant recruitment through flyers, face-to-face conversations, and electronic email recruitment at the Central Indiana Chapter of Cancer Support Community. Creswell (2013) recommends when using phenomenology methods, a sample size of 3 to 10 should be recruited. When using photovoice, a visual methodology similar to photo elicitation researchers recommend a sample size of 10 (Palibroda, Krieg, Murdock, & Havelock, 2009; Wang, 1999); therefore, the investigators aimed to recruit 10 participants for the study to engage in both image capturing and focus group discussions. Individuals interested in participating in the study contacted one of the authors and were screened for the following inclusion criteria: (a) At least 18 years of age, (b) has present or past diagnosis of cancer, (c) has access to Central Indiana Chapter of Cancer Support Community, (d) able to consent to participation, (e) able and willing to take photos, (f) able and willing to participate in demographic survey and education training session, (g) able and willing to participate in one focus group session, and (h) able to speak and understand English. Researchers did not include participants who were under 18 years of age or those with legal guardianship. Eligible participants included in the study participated in a first-come, first-basis where recruitment ended once researchers successfully secured 13 participants for the study. Data Collection An introductory meeting between investigators and participants took place at a predetermined time at the Cancer Support Community of Central Indiana. The authors read the informed consent document to the participants and requested their written consent to participate. Once receiving approval, participants completed a demographic survey and took part in an Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 14 educational session about the use of the assigned digital camera and the role of occupational therapy in survivorship care. Once all initial procedures were completed, and cameras were assigned and distributed, participants spent the next three to seven days taking photos that reflected their experience as a cancer survivor. The investigators collected cameras, and the captured photos through blurring out faces, blacking out names, and personal information were de-identified as necessary. The photos were then printed and numbered in preparation for the focus group discussion. Researchers conducted four focus groups consisting of three to four participants in each. Investigators implemented the SHOWeD method recommended for photovoice in order to frame descriptions and promote reflection on photos during the focus groups gaining a deeper understanding of the participants cancer survivorship experience (Wang, 1999). Appendix A includes the SHOWeD questions researchers used to elicit reflection and description of participants photos and lived experiences. Participants discussed their survivorship journey and shared photographs as a means of expressing and reflecting upon their experiences. All focus group sessions were audio-recorded and transcribed verbatim by investigators. Data Analysis All data collected throughout the study was placed on an encrypted Google Drive, which included photos taken by participants, demographic surveys, and audio recordings of focus group sessions. Researchers implemented thick rich description by developing textual descriptions of the participants experiences and supported the descriptions through the use of quotes, fieldnotes, and photos provided by the participants (Creswell & Poth, 2017). Six researchers individually read transcriptions twice before using individual open coding. Once all researchers completed initial open coding, they met as a group multiple times to Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 15 discuss similarities and differences between each members version and to determine final collaborative codes. During the coding process, researchers took notes, used memoing procedures, and sketched reflective thinking to identify emergent ideas. Axial coding was then used to identify additional categories and relationships among the open codes. While researchers were actively identifying patterns in the data with axial coding, they implemented constant comparative analysis to ensure all emerging themes were true to participant experiences. When a new pattern emerged, researchers referred back to all transcriptions and field notes to capture significant statements, sentences or quotes creating a foundation of support for the emerging theme (Creswell & Poth, 2017). Participant photos were analyzed using a cross-photo comparison, this process paralleled the focus group analysis until researchers achieved conceptual saturation. Selective coding was then used to intersect the categories into the emerging theory that researchers present as a logic diagram (See Appendix C). Results Participants Thirteen adult cancer survivors living in the community were recruited for this study at Cancer Support Community of Central Indiana. All thirteen recruited survivors completed the study including filling out a demographic survey (See Appendix B), participation in the introductory educational session, photo collection process, and focus group discussion session. Of the participants, three were male and ten were female. Participants ages ranged from 23-74 years old with an average age of 48.5 years. Less than a quarter (23%; n=3) of the participants reported that they were actively undergoing treatment. Close to half (46.2%; n=6) of participants were five years or less from their initial cancer diagnosis and over half (53.8; n=7) were five to Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 16 ten plus years since their diagnosis. Less than a quarter (23%; n=3) of the participants reported receiving occupational therapy services in their survivorship journey. Findings Researchers found four emergent themes and underlying sub-themes after data analysis. These themes consisted of: (a) Distress due to lack of education from their healthcare providers, issues of juggling and engaging in many pre-existing roles, and financial strain associated with the burden of a chronic condition, (b) Changes in perspective about mortality and appreciation for life, (c) Changes in client factors and, (d) Changes in occupational performance. Distress Participants described overall distress within their survivorship due to the identified subthemes of lack of education from their healthcare providers, issues of juggling and engaging in many pre-existing roles, and financial strain associated with the burden of a chronic condition. One participant described the feeling as shown in Figure 1: I felt like an unmade bed...things just werent the way they were supposed to be. I guess I was thinking this wasnt supposed to happen to me...what did I do to deserve this? Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 17 Figure 1. Participants unmade bed captured to describe general distress of cancer Lack of education. As survivors of the study began to describe distress, they described feeling overwhelmed and upset due to the lack of preparation offered by their healthcare providers. Data collected during the focus group interviews suggested that most participants' experiences with healthcare professionals were negative. As stated by one participant: I just never felt like they gave me much information. And what really irritates me now that I think back on it, I would probably go at it a different way. No, they didnt tell me anything. In fact, the second chemo round...I thought, well Im just going to look that up online. Boy, was I sorry I did that. Because they said the worst side effects was like losing your fingernails, your skin will flake, losing your toenails. Id already lost all body hair. And then I heard that, and I thought boy I hope I dont have all that. Well darned if I didnt. The whole nine yards. And I thought, I wish now... I dont know if Id go online and look. But I couldnt get them to[educate me]. I kept having so much nausea, and they, they kept giving me these stupid pills. They didnt relate to me too well. And the nurses didnt either. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 18 Participants shared feelings of distress as a result of a lack of education from unanswered questions, unexplained methods of self-management, and having feelings that some needs were being minimized by their healthcare providers. Well, how could I ask questions when I don't know what is what?... I don't know what to ask...First, tell me something. Give me some literature or something. Yeah, that just kinda bothered me cause, to me, its insensitive. Self-advocacy and reliance on personal resources for researching unanswered questions were actions expressed by participants as an effort to fill knowledge gaps left by providers. As described by one participant and displayed in Figure 2: They didnt tell me, when I was diagnosed I went and got the stitches out, [they] sent me home. I went online to find out what I had, let alone the medicine. [when] I left that day, the doctor told me that I would be getting some medicine in the mail but she didnt tell me what. So it came in that hazard bag, I opened it up and I read the side effects, so I didnt know, I thought who knows? You say, Im sending you cream, and like you said, do you have any questions? Well how could I ask questions when I dont know what is what. I dont know what to ask. Figure 2. Participants collection of pills used to describe the confusion associated with a lack of education and need for self-resourcing Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 19 Role strain. Some participants experienced role strain as they attempted to continue fulfilling roles even with their diagnosis, including but not limited to the roles of being a spouse, parent, and caregiver. Participants of this study reported difficulty in marital relationships as their spouses attempted to empathize with their experiences of survivorship. Additionally, intimacy following the acquisition of a caregiver role was challenging: So my wife was a caregiver. And that plays in our marriage; we're still married. We just went to counselors this afternoon. We still love each other, but nothing much else is the same. I just dont know how to be intimate with my caregiver [wife]. Because of that role that she [wife] assumed or that I assigned to her. Participants shared distress of juggling and engaging in many pre-existing roles and the desire to perform these normally, as evident in one survivors experience engaging with friends as a young adult: I got my first full time job so Im just gonna pick up this picture (See Figure 3). I drew a picture of a birthday cake that said 21 on it. I think theres a lot to it, but in the middle of my treatment was my 21st birthday...I worked a part time job well I tried [to] cause I needed money. And so I think when my friends were my age and doing standard things that you do when youre 21/22 and then I was going through treatment it was real clich like it was a lot different. I always tried to like feel or be as normal as [I] possibly could or try to feel my age and then I knew that I had to go and get my shot on Wednesday. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 20 Figure 3. Drawing made by a participant of a 21st birthday cake taken to show how she differed from other young adults due to her diagnosis Financial burden. Cancer survivors discussed the financial burden brought about by their cancer diagnosis and treatment. One participant stated in a matter of fact way: It was financial toxicity. Financial stress was a relatable topic for the participants because healthcare costs accumulated throughout their cancer survivorship journey even if they had health insurance as one participant shared (Figure 4): Financially, it was devastating. I ended up having to file bankruptcy; I wasnt going to pay all them bills. I mean 20, 30 thousand dollars. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 21 Figure 4. Picture of a dollar bill used to describe the financial burden associated with a cancer diagnosis Participants also described the overwhelming feelings associated with receiving bills and navigating healthcare costs which contributed to distress. One participant shared Figure 5, and reflected: Then the bills start coming in and they are just frightful bills you know a quarter of a million dollars you know and of course the insurance people negotiate with the hospital and so on but you know we have a deal now where we pay a certain amount every month and probably will until they settle my estate you know. Figure 5. Picture of a stack of medical bills used to show the fear brought on by receiving surmounting debt Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 22 When discussing financial strain related to cancer survivorship, the participants mentioned struggling to complete various financial management tasks. Examples of factors participants shared that contributed to their struggle included decreased attention and concentration, dependency on their parents for financial support, and premature return to work in order to generate a source of income. Change in perspective The experience of cancer survivorship has an impact on an individuals perspective about mortality and appreciation for life. These changes in perspective can lead to changes in occupations, most often causing participants to take up new occupations or find more meaning in existing occupations. Awareness of mortality. The shift from cancer being a death sentence or, as one participant described, an "order your flowers now kinda thing," to a survivable diagnosis allowed some participants to "start over." Being diagnosed with cancer was a reminder to participants that life is finite. This awareness of mortality often allowed participants to find deeper meaning in things life has to offer. One participant supported this theme and shared Figure 6 with a reflection: And its just a reminder to me that we have so many pages in our book, you know so many days in our life. And you can do with it what you want. I mean, you can waste them or you can...do all kinds of things. Its a reminder that we are all gonna end up some place like this someday whatever we do. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 23 Figure 6: Picture of a cemetery where a participant reflected on his own mortality Appreciation for life. Having a new appreciation for life and savoring the moment more often was discussed by many of the survivors in this study. One survivor discussed how she decided she was not going to work herself to death, while others mentioned that they have slowed down and become more patient and tolerant of things since dealing with cancer. One participant shared Figure 7 and described its meaning: I just have a different perspective now that Ive gone through, you know, cancer and stuff. I try and savor the moment and be in the moment and enjoy like oh, god, those leaves are so pretty and oh, look at those flowers, and I try to enjoy stuff as it happens and just enjoy the peace and quiet. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 24 Figure 7: Participants area to enjoy the peace and quiet and savor the moment Client factors Many participants voiced changes due to their cancer diagnosis and treatment in the form of cognitive issues, energy levels, sensation, and psychosocial factors that researchers identified at client factors. One participant summed this up by stating: It messes with your thinking. It messes with your brain. It messes with your diet. It messes with the way you look. You know it makes you tired all the time, practically all the time. You have short term memory. Brain bursts, you know, stuff like that. And neuropathy. I hated [it]. Cancer-related cognitive impairments. Cancer-related cognitive impairments (CRCI) caused difficulties in day-to-day living as participants struggled to attend to, concentrate on, and recall during daily activities. As one participant explained the meaning of Figure 8: Its just a person walking around in a fog. And thats kind of how I felt for a long time after well during chemo and then after it ended. I felt, I was just in a fog for a long time. I think theres a name for it, chemobrain. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 25 Figure 8: Image showing a man walking in a fog used to describe the feelings of cognitive changes. Cancer-related fatigue. Cancer-related fatigue (CRF) was the most frequently discussed client factor impacting occupational performance that participants identified. Participants described how low energy levels and poor endurance reduced their engagement in occupations, as they were unable to complete activities that they were able to do before their cancer diagnosis. Cancer-related fatigue also influenced motivation as participants began to prioritize certain activities as a means of saving energy: Yeah I laid on the couch. I turned the TV on a lot of times but Id sleep like I said. I remember saying to my husband one time, Oh if I didnt have to go to the bathroom I wouldnt get up. And all he could say was please do. (laughs) But I just.. I just couldnt move. Neuropathy & other sensory changes. Survivors also experienced the onset of neuropathy and other sensation changes affecting the hands, feet, breasts and digestive system. Neuropathy and other sensation changes impacted clients abilities to engage in meaningful and necessary occupations due to loss or change in appetite, decreased sensation impacting intimacy, Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 26 and trouble manipulating objects during daily activities. One participant expressed his issues with how neuropathy created difficulties in the kitchen: It's like I lost all sensitivity in my hands. I pick something up, and the next thing I know, it's not there... I get something out of the refrigerator and all of a sudden I drop it...out of the shelf of the pantry. Thats a big change. Psychosocial changes. Participants also discussed psychosocial changes that affected how they viewed themselves. At times, physical changes to ones body or physical abilities impacted participants psychosocial wellbeing. Psychosocial factors resulting from the physical and cognitive changes they experienced included altered beliefs, self-identity, and emotions. Where some participants felt they had lost their identity, others felt they had taken on a new one. One participant proudly shared her new identity of being a cancer survivor as shown in Figure 9 stating: "You always have the scars, but I call them battles scars, they show Im a survivor". Figure 9: Survivors shirt from a cancer walk which she used to describe herself as a survivor Change in Occupational Performance Participants expressed either a loss, gain, or modification in occupational engagement. Much of the loss in occupational engagement occurred due to client factors impacting motivation and one's ability to perform the occupation. One participant reflected: "There's a bunch of stuff Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 27 that were not able to do that we were able to do. This inability to perform in ways in which they were previously able left many of the participants with feelings of frustration. Regardless of how enjoyable or meaningful some occupations were, participants discussed having to cease participation or admitted to avoiding participation due to challenges they experienced. Upon encountering challenges, participants shared that they felt alone and were unaware of ways to modify certain activities in order to continue participating, which resulted in disengaging altogether. Nothing that I used to love to do I can do anymore. You know that kind of thing, so you have to reinvent yourself with not too much success. Occupational participation was modified in some cases when participants believed that occupations were too physically or mentally demanding. Often, this modification involved assistance from family members or significant others who aided in self-care, medication management, and home management tasks. At times, this increased need for assistance and support changed the relationship dynamic, as one participant stated, "That was the roughest year I think we've had the whole time we've been married." There was a reduction in occupational participation because participants were unable to balance these activities on top of attending treatments and doctor visits. As one participant described: I was trying to work and keep my head above water." In terms of employment, participants discussed choosing to work part-time hours or even quitting their job because they were unable to work at the level to which their bosses and co-workers expected of them: They wanted you to work at the capacity that you worked when you were better, and you can't do it. And after it's all said and done, they'll tell you, 'well, you didn't really do a good job.' And that, you know, you're already feeling like crap anyway, and then they turn around and talk to you that way. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 28 At times, participants shared finding ways to replace lost occupations by engaging in a new one. Motivation to adopt new, meaningful occupations were often brought on by a participant's change in perspective. For instance, one participant discussed how she left her existing work position and returned to college in order to pursue her dream job: Im not going to over-work myself for a company or an organization who is not going to help me stay healthy. And stress is ridiculous, and it does horrible things to you. Although participants mentioned avoiding social interaction, they discussed engaging in cancer support groups in order to interact with people who could better empathize with them and understand their experiences. The social aspect of the support groups led to the introduction of new leisure activities, such as crafts, gardening, and games. Participants mentioned building meaningful friendships with other members of the support groups by traveling on day trips together. Participants admitted that participating in these new activities and social interactions added value to their cancer survivorship experience and their lives. External Supports Participants relied on external support to help navigate obstacles associated with the themes distress, changes in perspective, client factors, and occupational performance. These external supports consisted of community and family, religion and spirituality, and engagement in occupations. While the experiences of each participant were found to be unique, a positive component of their cancer survivorship journey included their external supports. One participant described this support in the following way: "We've always seen that quote that says it takes a village, and I think it takes a village to get through cancer." External supports varied and were unique to everyones experience. For example, two participants who were husband and wife, both being cancer survivors, kept a tally board (See Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 29 Figure 10) in their home as a visual representation of the days that they survived cancer together. This ritual provided a positive support mechanism and motivation for their shared survivorship journey. Another individual described a jar filled with encouraging notes and words from loved ones in her life that she called, Jars of Joy (See Figure 11). The various kinds of external supports aided the participants in accepting the changes in their lives, including physical, psychological, and occupational changes. Figure 10: Tally board used to show days two participants survived cancer together Figure 11: Jars of Joy Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 30 Logic Diagram & Description Researchers created several renditions of a diagram to capture relationships between themes which developed into a final visual diagram (See Appendix C). The American Occupational Therapy Association (AOTA) (2014) describes cultural context as one's customs, beliefs, activity patterns, behavioral standards, and expectations accepted by the society of which a client is a member" (p. S28). Investigators identified that participants experienced a shift in cultural context, wherein they took on a new context defined by their cancer survivorship journey. It is suggested that "the cultural context influences the client's identity and activity choices" (AOTA, 2014, p. S28). This shift of cultural context is dynamic, inter-related, and ultimately paralleled by the experiences of the researcher identified themes of distress, changes in perspective, client factors, and in occupational performance. Shift in Cultural Context The shift in cultural context included a sense of belonging to a new community stemming from newly found empathy for other cancer survivors. There was also a realization among participants that they felt different after receiving their diagnosis; thus, this culture context shaped their identity and how they viewed themselves: Its just a different, its a completely different mindset. However, participants shared that they found solace and a sense of belonging within the cancer survivorship community and its cultural context. As one participant stated: I felt like I was joining the group; this is the breast cancer stamp...I knew I had a lot of sisters. Being a part of the new cultural context impacted interactions with non-survivors. More specifically, participants felt that non-survivors viewed and treated them differently, which, at times, resulted in a dissonance among relationships and decreased social participation or social avoidance: Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 31 I think the people who haven't had the opportunity to have cancer or certain types of treatments dont really understand. Especially the change. Because I have tried to explain to my loving wife that Im not the same person I was a year ago. Ultimately, survivors of this study found their shift to this new context as a barrier between them and non-survivors in their lives. This belief is because the non-survivor group did not empathize with the participants new identity and survivorship experiences. The survivors felt that people who have not had cancer lack understanding of their cancer-related experiences and even referred to them as "outsiders." As one participant explained, "You know you don't understand unless you've been through it because you're not the same. You change." Discussion This study adds to the literature about the lived experiences of cancer survivors by identifying a shift in cultural context that happens concurrently with distress, changes in perspectives, client factors, and occupational performance. The themes of distress, changes in perspectives and client factors dynamically influenced occupational performance and engagement. Previous studies have focused on recruiting participants who have certain cultural backgrounds but did not identify this new survivorship cultural context that has been added to their lives (Sleight, 2017). Newman et al. (2019) identified that the construct of participation involves a deeper understanding of various factors, including cultural expectations. With photo-elicitation methodology, researchers identified another important theme: change in perspective. Participants in this study expressed changes in perspectives that were framed positively about having a new appreciation for life, setting these findings apart from previous studies (Klaeson, Sandell, & Berter, 2013; Robinson, Miedema, & Easley, 2014). The positive lens through which changes in perspectives transpired is perhaps a result of how the Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 32 photo-elicitation methodology accurately captures the point of view and meaning of issues relevant to the participants (Glaw, Kable, Hazelton & Inder,2017). In other qualitative studies, authors Klaeson, Sandell, and Berter (2013) as well as Robinson, Miedema, and Easley, (2014) used a researcher-driven methodology and found negative psychosocial implications of survivorship that included: anxiety, depression, poor body image, and lower self-esteem. Our study found participants shared that psychosocial changes impacted engagement in intimacy, social participation and their self-identity. The opportunity to reflect upon experiences and discuss feelings related to one's journey provided the participants insight into ways that cancer has impacted their outlook on life. The results of our study support the results other researchers results in that survivors experience a loss of occupations and the need for modifying engagement in occupation due to the various client factors associated with survivorship (Dorland et al., 2016; Hopkins et al., 2015; Shipp, McKinstry, & Pearson, 2013). However, investigators in this study uncovered a new finding, which was that some survivors described a gain in occupation. A "gain" in an occupation means the individual adopted a new occupation, often replacing a lost occupation or as a result of a change in perspective. Participants expressed that new meaningful occupations formed as a result of a change in perspective. The results of this study mirror those of previous researchersthe financial strains of having a chronic condition and a lack of education provided to the survivors cause distress (Duijts et al., 2014; Holm et al., 2012; Lyons et al., 2013). Additionally, the researchers of the current study found that role strain was a significant area of distress among the participants, as they had difficulty managing their previous roles due to changes experienced. Participants in this study expressed a loss of occupation due to the dynamic and interrelated issues of survivorship such as distress, changes in perspectives, client factors and Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 33 occupational performance. More than half of the participants in this study were five years or more into their survivorship journey and only 23% ever received occupational therapy services. While our sampling was small given the research approach, these findings are similar to a larger quantitative study. Pergolotti et al. (2015) found that among an estimated 87% of older cancer survivors who were considered to be in need of occupational therapy, only 32% were treated by occupational therapy within the first two years of the cancer diagnosis. Study Limitations Although researchers used member checking during and throughout the data collection process, member checking of results is forthcoming. Furthermore, ongoing peer examination was not implemented into the design of this study throughout the research process; however, it did take place during the final editing phase. Having a peer review throughout the studys process would have improved the dependability of findings. Lastly, the chosen methodology poses a limitation to the studyWang and Burris (1997) suggest that participants may struggle to capture pictures that symbolically define their journey due to the abstract nature of the design. Researchers tried to control for this by holding picture training sessions and handing out resources on the purpose of the study prior to participants taking photographs. Implications for Clinical Practice The authors of this study suggest that survivors experience a shift in cultural context and unique changes in roles, leaving them feeling unprepared to navigate and adequately compensate for the obstacles inherent in survivorship. Based on these findings, the authors support the need for occupational therapy among cancer survivors due to participants expressing issues in occupational performance and engagement. The participants of this study arrived at solving many of their own occupational performance issues by replacing or giving up some of their Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 34 meaningful activities. Therefore, it is imperative that screening and referral to occupational therapy services happens for survivors in order to assure that their occupational performance and engagement issues are being addressed. Occupational therapists can show survivors how to modify or improve their engagement in activities in order to avoid a loss of meaningful occupations. Intentionally looking into the perspectives and personal experiences of cancer survivors related to their survivorship journey adds value to the body of occupational therapy literature. Occupational therapists who regularly interact and treat this population can use these findings to inform their understanding of the experiences of cancer survivors in order to best meet their unique needs and assist with activity modifications to prevent loss of occupational performance and engagement. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 35 Reference American Cancer Society. (June,2015). Depression. Retrieved from https://www.cancer.org/treatment/treatments-and-side-effects/physical-sideeffects/changes-in-mood-or-thinking/depression.html American Cancer Society.(May, 2016a). What is cancer-related fatigue. Retrieved from https://www.cancer.org/treatment/treatments-and-side-effects/physical-sideeffects/fatigue/what-is-cancer-related-fatigue.html American Occupational Therapy Association. (AOTA). (2014). Occupational therapy practice framework: Domain and process (3rd ed.) American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Asher A. (2011). 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L., & Andrykowski, M. A. (2008). The physical and psychological longterm and late effects of cancer. Cancer, 112(Suppl 11), 2577-2592. doi: 10.1002/cncr.23448 Steiner, J. F., Cavender, T. A., Nowels, C. T., Beaty, B. L., Bradley, C. J., Fairclough, D. L., & Main, D. S. (2008). The impact of physical and psychosocial factors on work characteristics after cancer. Psycho-Oncology, 17(2), 138-147. doi:10.1002/pon.1204 Todd, B. L., Feuerstein, E. L., & Feuerstein, M. (2011). When breast cancer survivors report cognitive problems at work. International Journal of Psychiatry in Medicine, 42(3) 279294. http://dx.doi.org/10.2190/PM.42.3.d Von Ah, D., Habermann, B., Carpenter, J. S., & Schneider, B. L. (2013). Impact of perceived cognitive impairment in breast cancer survivors. European Journal of Oncology Nursing, 17(2), 236-241. http://dx.doi.org/10.1016/j.ejon.2012.06.002 Wang, C. C. (1999). Photovoice: A participatory action research strategy applied to women's health. Journal of Women's Health, 8(2), 185-192. Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 43 Wang, C., & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369-387 Yonemoto, T., Takahashi, M., Maru, M., Tomioka, A., Saito, M., Araki, Y., ... & Ishii, T. (2016). Marriage and fertility in long-term survivors of childhood, adolescent and young adult (AYA) high-grade sarcoma. International Journal of Clinical Oncology, 21(4), 801-807. doi: 10.1007/s10147-016-0948-2 Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 44 Appendix A SHOWeD Methodology SHOWeD Opening Statement/Question: Does someone want to share the story behind their photo or what your photo means to you? Adapted SHOWeD (Wang & Burris, 1997). S: What do you see here? Why did you take this photo? What was going through your mind when you took this? What do others see in this photo? H: Whats really happening here? How does this make you feel? Does anyone else view this differently? What did you think when you took this photo? O: How does this relate to our lives? How does this reflect your experience with cancer? Can anyone else relate to this? W: Why does this problem or strength exist? How have you overcome this problem? How long did it take you to overcome this problem? How did you feel about this problem when it was occurring? Did you seek help? What help did you seek? Did they help you? Where did you find this strength? Did you already have it? D: What can we do about this? What would you recommend to those who are cancer survivors? What do you think could have been done to help you cope with your cancer survivorship? Based on what you have shared today in terms of your survivorship, in what ways do you think occupational therapy could have helped you? Prompts Did other participants have similar experiences? For those of you who havent shared all their photos, is there photos that you would like to share that is meaningful to you? Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER 45 Appendix B Demographic Table Table 1: Participant Demographics by Number of Participants Age (years) Variable 20-29 30-39 60-69 70-79 n/a n (%) 1 (7) 1 (7) 6 (46.2) 3 (23.1) 2 (15.4) Ethnicity African American Black- American Caucasian 1 (7) 1 (7) 11 (84.6) Gender Male Female 3 (23.1) 10 (76.9) Type of Cancer Breast Colon Fallopian Tube Lung Melanoma NET (carcinoid) NSCLC adenocarcinoma Pancreatic T-Cell Non-Hodgkin's Lymphoma 4 (30.8) 3 (23.1) 1 (7) 1 (7) 1 (7) 1 (7) 1 (7) 1 (7) 1 (7) Stage of Cancer I II III IIIb IV Unknown 5 (38.5) 4 (30.8) 2 (15.4) 1 (7) 1 (7) 1 (7) Treatment Type Surgery Radiation Chemotherapy Chemotherapy and Radiation Other 2 (15.4) 3 (23.1) 9 (69.2) 3 (23.1) 1 (7) Cancer Survivorship (years) 1-5 5-10 +10 6 (46.2) 2 (15.4) 5 (38.5) Received Occupational Therapy Services for Survivorship Care Yes No 3 (23.1) 10 (76.9) Running Head: IT TAKES A VILLAGE TO GET THROUGH CANCER Appendix C Logic Diagram Depiction 46  ...

... CAREGIVER ANXIETY AND PLAY 1 The Effect of Caregiver Anxiety on Play in Children with Disabilities Kaitlynne James, Sydney Elliott, Kailan Henderson, Ellen Hodson, Megan Julian, Raquel Sauder December 13, 2019 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Alison Nichols, OTR, OTD CAREGIVER ANXIETY AND PLAY 2 A Research Project Entitled The Effect of Caregiver Anxiety on Play in Children with Disabilities Submitted to the School of Occupational Therapy at University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Kaitlynne James, Sydney Elliott, Kailan Henderson, Ellen Hodson, Megan Julian, Raquel Sauder Doctor of Occupational Therapy Students Approved by: Research Advisor (1st Reader) Date 2nd Reader Date Accepted on this date by the Chair of the School of Occupational Therapy: Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Date CAREGIVER ANXIETY AND PLAY 3 Abstract Play is a major occupation that contributes to child development and quality of life. The purpose of this study was to examine how caregiver anxiety impacts play with children with disabilities. Using a qualitative phenomenological approach, researchers conducted interviews with four mothers of children with either Autism Spectrum Disorder or Down syndrome to gain information on their lived personal experiences regarding play with their child. All caregivers had scores at or above mild anxiety on the Generalized Anxiety Disorder-7 questionnaire. After analyzing transcripts of the interviews, researchers found three major themes: finding joy in play, causes of anxiety, and the impact of anxiety on play. Caregivers reported feelings of joy and happiness during play with their child when they created a unique bond and discovered satisfaction and empowerment in their play. However, common causes of anxiety were lack of time, delayed achievement of developmental milestones, and feelings of playing wrong with their child. Caregivers described the effects of their anxiety on play as difficulties with balancing play with personal responsibilities and making play seem purposeful or educational. Clinicians should emphasize interventions aimed at decreasing the anxiety of caregivers to improve overall experiences of play for both the caregiver and the child. CAREGIVER ANXIETY AND PLAY 4 The Effect of Caregiver Anxiety on Play in Children with Disabilities Play looks different to all who engage in it, thus play can be difficult to define. Occupational therapists Parham and Fazio (2007) define play as, Any spontaneous or organized activity that provides enjoyment, entertainment, amusement, or diversion, (p. 448). Play is essential for children to engage in because it impacts their cognitive, physical, social, and emotional development (Gagnon & Nagle, 2004; Ginsburg, 2007; Kelly-Vance & Ryalls, 2008). Play encourages creativity, which allows caregivers and children to interact together and build trust (Ginsburg, 2007). Children with disabilities may struggle in developing the essential skills needed for participating in play, impacting their overall development (Brodin, 1999). Therefore, it is important to consider the effect a disability may have when assessing play and development in children. Children diagnosed with a disability may present additional demands on a family, increasing caregivers risk for anxiety, grief, and interruption to normal routines (Nabors et al., 2013). Recognizing the health of caregivers is important, as their health impacts their childs development and well-being (Murphy, Christian, Caplin, & Young, 2007). Research indicates that the physical and emotional health of caregivers is more likely to decline with increased caregiving demands (Murphy et al., 2007). Occupational therapists are encouraged to help caregivers find sources of support and provide education on ways to care for a child and the caregiver by teaching strategies and skills to improve caregivers physical and mental health (Manee, Ateya & Rassafiani, 2016). Although the benefits and importance of play and child development are clear, little research has been conducted that indicates a connection between a caregivers level of anxiety and its possible effects on the way they participate in play with their child who has a disability. CAREGIVER ANXIETY AND PLAY 5 Play of Children with Disabilities Caregivers may have expectations for how their child should play. For a child with a disability, their style of play may look different, thus requiring the caregivers to adapt to the childs needs. Researchers found that children with intellectual and social disabilities need additional guidance with initiation of play and interaction with toys as these children have been found to be less motivated to play, have decreased self-esteem, and possess fewer social skills (Brodin, 1999; Holmes & Willoughby, 2005; Missiuna & Pollock, 1991). Children with intellectual and motor disabilities experience increased childhood stress, decreased availability of resources to assist with coping and improving their intellectual disability, fewer educational opportunities, and lessened opportunities to participate in certain activities (Floyd & Gallagher, 1997; Murphy et al., 2007; Paczkowski & Baker, 2007). Specifically looking at children diagnosed with Autism Spectrum Disorder (ASD), play can look different when compared to typically developing children. Children with ASD have characteristics such as poor social participation, fixated interests, decreased flexibility, repetitive behaviors, and hypersensitivities to external stimuli, which can make play difficult (Lin, Tsai, Li, Huang, & Chen, 2017; Romn-Oyola et al., 2018). Children with ASD typically desired more control during play to decide which activities they participated in (Romn-Oyola et al., 2018). With the child in this role, caregivers were led to express more frustration and decreased understanding of how their child wants them to play (Romn-Oyola et al., 2018). Children diagnosed with ASD have decreased abilities or interest for engaging in pretend play and sensorimotor play and are more likely to engage in rough and tumble play (Lin et al., 2017; Romn-Oyola et al., 2018). Decreased engagement in pretend play can lead to lowered CAREGIVER ANXIETY AND PLAY 6 opportunities to express creativity, apply attention skills, participate in fine motor skills, and monitor emotional regulation (Lin et al., 2017). Higher success rates for children with ASD have been found when caregivers structure play around the childs preferences of play that are intrinsically motivating to the child (RomnOyola et al., 2018). It was found that when caregivers force play patterns or have very structured play patterns and routines, children with ASD tend to avoid these types of play and demonstrate negative behaviors (Romn-Oyola et al., 2018). Caregivers have reported increased competence and self-efficacy when they discover the ability to play and interact with their child, leading to a stronger caregiver-child bond (Romn-Oyola et al., 2018). Mothers in particular placed greater emphasis on making progress towards skills and accomplishing tasks and on integrating play into daily activities (Romn-Oyola et al., 2018). While there is less research regarding the play of children with Down syndrome (DS), these children are also likely to experience differences in the developmental progression of play compared to typically developing children (Venuti, de Falco, Esposito, & Bornstein, 2009). Children with DS were shown to have lowered attention span during sustained play and tended to repeat play schemes (Venuti et al., 2009). Typically, children with DS tend to have fewer skills in exploratory play, resulting from lowered cognitive skills and less structure in their daily routines (de Falco, Esposito, Venuti, & Bornstein, 2008; Venuti et al., 2009). Venuti, de Falco, Giusti, and Bornstein (2008) found that children with DS showed increased play skills when they were in sight of their mothers as opposed to playing by themselves, indicating that parental involvement in play is impactful for the development of a childs play skills. An additional study indicated that a childs exploratory and collaborative play increases with maternal involvement, as a result, serving as an increased motivator for children CAREGIVER ANXIETY AND PLAY 7 to participate in play (Venuti et al., 2009). Similar to children with other intellectual disabilities, children with DS greatly benefit from positive caregiver involvement (de Falco et al., 2008). Caregivers who possess a positive affect, demonstrate greater sensitivity to their childs development and diagnosis concerns, and engage in play with their children have an increased chance for healthy development and decreased medical complications (de Falco et al., 2008). When parents demonstrate over-protectiveness or over-bearing attitudes, they can have an overall harmful effect on childrens play (de Falco et al., 2008). Parental involvement has been supported to have positive effects on a childs development and play patterns. Children with motor disabilities are found to be at risk for behavioral problems, decreased coordination, poor concentration levels, and poor academic performance, which all impact play (Smyth & Anderson, 2000). Play participation has shown to lower self-efficacy of the mother and the child with motor impairments (Smyth & Anderson, 2000). Similar to children with intellectual disabilities, without access to early intervention and proper adaptations, these problems have the potential to persist into adolescence (Smyth & Anderson, 2000; Soref et al., 2012). Impact of Caregiver Health on Children with Disabilities When looking at factors that impact the way a caregiver plays with his or her child with a disability, it is important to understand the impact on caregivers health when caring for a child with a disability. Caregivers of children with disabilities reported increased anxiety levels, depression, chronic health problems, grief, interruption to normal routines, and additional demands (Brehaut et al., 2011; Manee et al., 2016; Murphy et al., 2007; Nabors et al., 2013). Caregivers of children with ASD were found to experience higher levels of stress related to a lack of professional support, concerns regarding the diagnosis affecting their childs current CAREGIVER ANXIETY AND PLAY 8 life and future, and disapproval from others about behaviors demonstrated by the child as well as feelings of incompetence, emotional dysregulation, depression, and feelings of hopelessness (Romn-Oyola et al., 2018; Sharpley, Bitsika, & Efredmidis, 1997). Caregivers of children with DS and other intellectual disabilities were more likely to experience parental stress and lower self-efficacy levels (de Falco et al., 2008). Children with disabilities tend to require increased care and attention, causing caregivers to place more emphasis on their childs health than their own (Murphy et al., 2007). Furthermore, poor caregiver health correlated with more hospitalized children and created the need for placing the child outside of the home (Murphy et al., 2007). Numerous factors can increase stress when caring for a child with a disability. Stress may negatively affect the childs education, play, language, and communication (Murphy et al., 2007). Caregivers stress may increase due to impaired sleep, lack of a support system, increased caregiving demands, lack of time, and negative child behaviors (Murphy et al., 2007; Plant & Sanders, 2007). Impairments in caregivers psychosocial health may occur due to low income levels, lack of job opportunities, decreased support from a significant other, young age, additional dependents in the household, caregivers own disability, and/or a high school degree or lower education (Klassen et al., 2004; Lewis et al., 2015). Caregivers reported feelings of frustration and discouragement when they were unable to perform childcare responsibilities due to their personal disability, lack of resources and adaptation tools, barriers inside or outside the home, and/or limited ability to interact and bond with their child (Wint, Smith, & Iezzoni, 2016). Caregivers also reported that being away from home, misunderstanding their childs diagnosis, emotional stress, and siblings and other immediate family members not coping well with the diagnosis exacerbate stressful circumstances (Nabors et al., 2013). A more relaxed and emotionally well-adjusted caregiver played more freely with their child and reported less anxiety CAREGIVER ANXIETY AND PLAY 9 when they had opportunities to take breaks and had a strong support system (Murphy et al., 2007). The health effects that caregivers experienced, especially anxiety relating to stress about their childs medical diagnosis, had a negative impact on the interactions they had with their child (Kenneson & Bobo, 2010). Employed mothers who cared for their children had a higher level of social support but increased anxiety because of separation from their child while at work, leading to less opportunities for play (Kenneson & Bobo, 2010). Studies have found that depression caused mothers to be less engaged and less responsive to their childs needs (Lefkovics et al., 2014). In regards to play, the child lost confidence and became shy, as they did not want to socially interact with other individuals (Wood et al., 2003). Overall, quality interaction is vital for a childs development (Morrissey & Brown, 2009). It is crucial to understand the causes of a caregivers decreased engagement with their child, as play is important for development and children need their caregivers to model what play should look like. To summarize, understanding how play differs in children with disabilities compared to typically developing children is beneficial when exploring ways to enhance a childs participation in the occupation of play. Due to increased responsibilities caring for a child with a disability, caregivers stress and anxiety impacts their personal health and the interaction with their child. When caregivers valued their childs play and became aware of the most effective play techniques for their child and their unique abilities, they reduced their childs anxiety and negative behaviors (Swan & Ray, 2014). Although research has suggested that the health of the caregiver affects the childs play, no research currently exists on if or how caregiver anxiety impacts play in children with disabilities. CAREGIVER ANXIETY AND PLAY 10 Methods Study Design The research design for this study was a qualitative phenomenological approach in which researchers investigated the lived experience of caregivers to better understand the participants own experiences and attitudes as a caregiver. The phenomenological approach was used by collecting data through interview questions to explore caregivers attitudes and personal experiences with their child with a disability relating to their anxiety levels experienced during play. Interested participants completed an online screening tool, the Generalized Anxiety Disorder-7 (GAD-7) questionnaire. Once the GAD-7 was completed, the participant was informed whether he or she qualified to participate in the study, requiring a score indicating at least mild anxiety. If they did not have a score that indicated at least mild anxiety, they were directed to a screen thanking them for their participation and informing them that they did not qualify for our study. If they did qualify for the study, they had the option to provide contact information for the primary investigator, who then attempted to schedule a 30-60 minute semistructured interview. Participants Caregivers were recruited from various facilities through flyers, social media, email, and newsletters. Inclusion criteria for participants consisted of caregivers of a child with a disability between the ages of birth to five years and eleven months old. Caregivers had to be 18 years of age or older in order to participate. Instruments The instrument utilized for screening was the GAD-7, a self-reporting measure of anxiety (Spitzer, Kroenke, Williams, & Lwe, 2006). The GAD-7 measures the reported level of anxiety CAREGIVER ANXIETY AND PLAY 11 in caregivers and gives a score based on their responses to seven questions. The GAD-7 takes less than five minutes to complete. The highest score that can be given is twenty-one (Spitzer et al., 2006). Scores between zero and four did not qualify participants for our study, but any score above four indicates mild anxiety (scores between five and nine), moderate anxiety (scores between ten and fourteen), or severe anxiety (scores above fifteen) and qualified participants for our study. For those whose scores qualified them to participate in the study, they were offered an opportunity to provide a method of contact for the primary investigator to schedule an interview. Researchers found that the GAD-7 exhibits excellent internal consistency along with good construct and factorial validity, therefore, making it a reliable and valid tool to evaluate the existence and severity of generalized anxiety disorder (Spitzer, et al., 2006). In a previous study examining the social, psychological, and financial burden on caregivers of children with chronic illnesses, the GAD-7 was used to screen for depressive and anxious symptoms (Khanna, Prabhakaran, Patel, Ganjiwale & Nimbalkar, 2015). Researchers found significant psychological distress, financial, and social burden experienced by the caregivers (Khanna et al., 2015). Interview Process Once the participant qualified for the study, an interview was scheduled at the University of Indianapolis. Participants had the option to be interviewed virtually if they were unable to have an in-person interview. Interviews included the participant, the principal investigator, and an occupational therapy student co-investigator from the University of Indianapolis. Interviews lasted approximately 30-60 minutes and were audio recorded. Participants received an informed consent, providing the option to stop the interview at any time. Recordings were transcribed verbatim by investigators. If the participants accidentally provided identifiable information, the data was redacted from the transcripts. Caregivers and children were provided with pseudonyms CAREGIVER ANXIETY AND PLAY 12 to protect their anonymity for the purpose of this manuscript and these pseudonyms are provided in Table 1. Specific questions were asked during each interview, as well as any probing questions deemed appropriate by the primary investigator. A list of interview questions is shown in Figure 1, which served as a guide to gather information during the interview. Table 1 Participant Pseudonym Information Mother Child Age Diagnosis Amy Allie 5 years old Down Syndrome Beth Ben 5 years old Down Syndrome Carissa Cody 3 years old Autism Spectrum Disorder Denise Dylan 4 years old Autism Spectrum Disorder Figure 1 Interview Questions 1. Tell me a little more about your child. 2. What does a typical daily routine look like for you and your child? 3. How does your child spend his/her time? (How would you describe play for your child?) 4. What does it look like when your child plays alone? 5. What does it look like when your child plays with other children? 6. When you play with your child, what does it look like? 7. How does your current play with your child look different from your expectations of play? a. Follow-Up Question: Based on the online questionnaire you took, your score indicated that you have at least a level of mild anxiety. Would you say that is accurate? b. Follow-Up Question: How do you feel that your anxiety impacts your play with your child? 8. If you could change anything about how you play with your child, what would you change? 9. How do you feel when you play with your child? 10. What is your favorite part about playing with your child? CAREGIVER ANXIETY AND PLAY 13 Data Analysis Three researchers were assigned to each interview to transcribe the recordings, which were checked for accuracy by another team member. Qualitative data was analyzed using a general inductive analysis approach as described by Thomas (2006); he refers to general inductive analysis as making interpretations from raw data to discover themes that contribute to research. A general inductive approach is an efficient and convenient way to analyze qualitative data (Thomas, 2006). The major goals of inductive analysis include summarizing raw data into themes, detailing correlations found in the study that link to the research objectives, and creating a model or theory about the data determined from the study (Thomas, 2006). The research team members independently reviewed the transcripts to reduce bias and to develop initial impressions of the data. The PI led a group discussion, where each member shared their initial interpretations of the findings. After a period of a discussion, the data were reduced to broad categories, and a set of three themes were developed. Trustworthiness of these findings was enhanced by use of multiple analyst triangulation, the use of verbatim transcripts, and maintenance of an audit trail. Findings Researchers completed interviews with four caregivers of children with disabilities, including two caregivers of children with Down syndrome and two caregivers of children with Autism Spectrum Disorder between August of 2017 and November of 2018. In total, 28 individuals completed the GAD-7, with 18 receiving qualifying scores. Nine caregivers provided methods of contact, and four interviews were successfully completed. The following themes were derived from the data depicting the caregivers experiences: causes of anxiety, anxietys impact on play, and finding joy in play. CAREGIVER ANXIETY AND PLAY 14 Causes of Anxiety Researchers found a wide variety of causes leading to caregiver anxiety that were expressed during interviews. Major subthemes found included caregivers lack of time to balance caregiving and life demands; caregivers desire to make play purposeful; caregivers feelings of inadequacy; delayed achievement of developmental milestones; and child portraying negative behaviors. Difficulty Balancing Schedules and Times All four caregivers expressed their concern of lack of time and difficulty balancing busy schedules, leading to increased feelings of anxiety. Caregivers expressed struggling to find a balance between play, work, household management, therapy sessions, driving extended distances for school and therapies and they voiced how it can be hard to find motivation to play after long days. For example, Amy said, I think if I could change anything about how I get to play with her it would be...I would want people to come in and do all my mom work so I could just play with her you know...I feel like she could be doing a lot more, and we could make so much more progress if I was able to just spend my time with her playing. But...we have to cook dinner and get ready for bed and I've gotta go to work and...there's so many responsibilities that if somebody could take those away I feel like...I could handle the play stuff. Other caregivers also indicated if they could have fewer responsibilities and more energy, they would have more time to play with her child. CAREGIVER ANXIETY AND PLAY 15 Desire to Make Play Purposeful All four caregivers expressed the need to make play purposeful, successful, or educational with their child. Play was found to bring anxiety to caregivers if they felt they could not achieve a successful level of play or if they felt like they were not playing the right way. Carissa stated that her anxiety increased when she chose educational play versus fun play with her child, He goes at his own pace... my anxiety does not do well with that...the more anxious I am the more likely I am to pull out the therapy toys instead of the fun toys. Denise expressed her view of successful play as taking more time and energy and this increased her anxiety level and impacted her feelings of self-efficacy. I would say at that point youre just stressed out or you feel like youre doing everything wrong so then you just shut down as a person...I feel like...a person...who is narrating whats going on to get...language...matching up with actions...like you need to be on it to have...a successful play I feel like so it just takes more energy; it just takes more time. The desire from all caregivers to make play purposeful, successful, and educational increased anxiety levels, affecting overall mental health. Feelings of Inadequacy Caregivers expressed increased anxiety when they were evaluating if there was anything additional that they should or could be doing with their child in order to promote healthy development. Increased guilt was experienced when caregivers felt that they were not doing enough to enhance their childs abilities. Amy stated, Am I working with her enough? Is she keeping up? Should I be spending more time doing this? Like shes not in this therapy, maybe I should be doing extra PT (physical therapy) stuff or extra OT (occupational therapy) type stuff with her since shes not doing CAREGIVER ANXIETY AND PLAY 16 therapies outside of the school. Or how can I make this play more productive so that she is getting something out of it? Another cause of caregivers anxiety was feeling like they were not playing the right way with their child and not meeting their childs expectations, affecting the childs mood and increasing caregivers frustration. Caregivers also had previous expectations about what play should look like and when their child with a disability did not play in ways that met their expectations, it caused the caregivers to feel frustrated, anxious, or inadequate. Denise stated her view on feeling frustrated when her child made her feel as though she was not playing right, I would say...with...the frustration and stuff...you just feel like youre not playing right, youre not doing it the right way. So you just kind of have to learn to let him take lead. Additionally, all four mothers agreed that play with their child was different than what they expected it to be when they thought about play with a typically developing child. Beth said, I thought it was going to be...snuggling in bed and reading books together or being able to just go to museums or go to the zoo and it just be...fun...I would be looked to as someone fun and...Id be able to take them to fun places...or at least I thought thats what it was going to be like...but yeah its a lot different. Researchers found that caregivers experienced elevated anxiety and feelings of inadequacy when they compared themselves and their parenting styles to other caregivers. Amy said, I think there's this constant comparison...that's one of my...personal biggest struggles is comparing myself to other moms of children with Down syndrome and...look at all the things theyre doing and I'm not doing that. Beth similarly stated, You see on Facebook what everyone else is doing and then you...know that...guilt or that anxiety can...increase. Its like oh maybe he should be doing that...and this. CAREGIVER ANXIETY AND PLAY 17 Delayed Achievement of Developmental Milestones Caregivers noted various areas of concern with their child not meeting developmental milestones, which increased anxiety levels. For the children with DS in the study, commonly reported unmet skills and inappropriate behaviors included deficits in expressive language, possessing selective attention, demonstrating sensory-seeking behaviors, and decreased fine motor skills. Both caregivers of children with DS expressed their childrens strengths in pretend play. On the other hand, caregivers of children with ASD expressed concerns about deficits in skills and inappropriate behaviors in effective communication skills, expressive thoughts, nonestablished preferences to people or toys, decreased engagement in play, self-stimulating behaviors (specific abnormal body movements, repetitive behaviors, or fixations), unpredictability during play, and sensory-seeking behaviors. Carissa discussed when she started noticing her child not meeting milestones and how that impacted her anxiety. Red flags for it started around six months of age...some days it seems like he has a milder form and you kinda think oh yeah, hell grow out of it, then there are other days like, whoa, its gonna be a long ride...So the anxiety is pretty high currently because weve kinda hit this...stopping point in his program where he needs to make that next jump (developmentally). We cant do anything until he does. Caregivers anxiety levels were found to increase during play when they were unable to understand their childs attempts at communication, which reportedly led to overall frustration from the child as well as the caregiver, thus impacting overall play engagement. Amy mentioned how her daughter struggled with speech and how her impaired speech impacted play, I think her biggest struggle right now is probably withexpressive languageIt makes play really hard because shes got certain things she wants us to do and she cant tell us. CAREGIVER ANXIETY AND PLAY 18 Child Negative Behaviors Lastly, caregivers also talked about how negative behaviors portrayed by their child increased anxiety. They explained that their child would get accustomed to certain activities or environments and did not adapt well to change. Some of the caregivers also discussed their anxiety toward going out in public with their child due to safety concerns. Overall, a variety of factors can have an influence on caregivers levels of anxiety. Caregivers voiced concerns with the difficulty of balancing caregiver demands and responsibilities with life demands, which influenced caregivers attention and attitudes expressed during play. Caregivers voiced concerns with making play purposeful and whether they were playing the right way with their child, increasing feelings of inadequacy during play. Developmental concerns in the child increased anxiety levels of caregivers, therefore, decreasing positivity displayed during play from caregivers. Knowing the causes of anxiety will provide further insight on the impact that caregiver anxiety has on play in a child with a disability. Impact of Anxiety on Play The impact of anxiety on play is complex and manifested by a host of interrelated factors. These include negative child behaviors and developmental deficits, increased difficulty in balancing play and responsibilities, and the pressure caregivers experience to make play purposeful and educational. Together, these influences can contribute to increased caregiver anxiety and have negative impacts on the occupation of play. Child Characteristics One major deficit noted by all four caregivers was communication, specifically expressive language and listening skills. Denise mentioned, Communication, thats where he struggles communicating clearly, and speaking clearly of what he wants but then also CAREGIVER ANXIETY AND PLAY 19 receptively understanding what is being asked of him. Other caregivers echoed this statement; they described a lack of eye contact from the child and at times a lack of response at all. Amy said, She picks and chooses what she listens towe definitely have to keep instructions shorter and more concise. Attention was also a factor as the caregivers noted their childs short attention spans. These communication skills deficits were found to affect play because the child did not consistently respond or demonstrate awareness of their peers or family members. Another deficit noted was the type of play children engaged in. Amy and Beth talked about their children with DS engaging in more parallel and pretend play, while Carissa and Denise said their children with ASD were not as interested in collaborative play and would rather play alone. Denise mentioned her child, Wont insert himself, or he might watch other kids play at a playground. Deficits in fine motor skills and delayed development were found to affect the way the children played as well. Beth commented to explain the activities she sees her child has deficits in, Like handwriting, scissors, dressing, undressing, those types of things. These mentioned deficits were found to increase the time required for completing fine motor activities. Carissa said her son, Goes at his own pacemy anxiety does not do well with that. Increased time demands can cause anxiety for the mothers because as discussed below, the caregivers feel like the time they have to play with their child is limited. All four caregivers also described how their child preferred to be in control of their play, making it difficult to structure. Denise stated, he controls it all, while Carissa said she tries to follow his lead. This presents challenges for the caregiver to play with the child because they feel like they are not playing right or in the correct ways, leading to increased frustration from them. Denise stated, CAREGIVER ANXIETY AND PLAY 20 Ive tried looking on Pinterest and coming up with ideas and getting it all ready and thinking okay were just going to do this one thing I already have it to like three fourths of the way done I just need him to help with like one little thing. It just never works out. So you kind of just, you can never really plan anything. You just have to be very flexible because you just never know what will set him off. Negative child behaviors also made play more challenging. Amy mentioned, shes incredibly stubbornshes got a horrible attitude sometimes when shespits at us. Carissa said her child is starting to get a little aggressive, a lot of stimming going on. In addition, Denise stated, you never know what will set him off. These behaviors led to increased anxiety and decreased positive mood for the caregivers in regard to playing with their child. Carissa elaborated, because hes knocked into you so hard you, Ill snap and Ill get angryand hedoesnt understand what it means to hurt somebody. So hes just confused and then when he starts cryingeverything else kind of falls to potit affects play and sometimes Ill just not do it at all. Balance of Play and Responsibilities Another factor that was similar among all the caregivers and increased anxiety during play was establishing consistent routines that were structured and incorporated into play. Carissa said, It is pretty structured throughout the weekwe have such a good established routine, Im a very routine person. With that being said, the children were often resistant to change in the routines as Amy mentioned her daughter eats the same exact thing every day. All the caregivers mentioned the responsibilities as part of their routines that limit the time they have to play with their children. Amy stated, Its a time constraint you know trying to balance CAREGIVER ANXIETY AND PLAY 21 everything and fit it all in and figure out whats the most important thing. Carissa said balancing everything feels like the biggest obligation in the world. Because of this, caregivers attention is frequently divided, mentioning they were often unable to devote enough time, attention, and effort to play. All caregivers consistently reported that the amount of responsibilities and trying to find a balance among all lifes demands made the caregivers feel anxious. Amy stated, Theres so many responsibilitiesand I am just tired. Beth would like to be a little bit more relaxed and not so worried. Carissa confessed, Im shorter on temperI dont always want to play with my childrenI would change my patience level. Denise feels like theres no break for meit just takes more energy it takes more timeI wish that I could replicate myself. The increased schedule demands the caregivers experienced had a negative impact on sleep. Carissa discussed how having a rough day or lack of sleep increased the likelihood of decreased play performance with her child. If Ive had a particularity bad night of sleep, which is usually driven by the anxietyIm shorter on temper in the morning too, or I may choose not to sit on the floor and play with him. Ill still get out the bucket of toys buthe wants to play with me but Ill choose to sit on the couch and growl while Im cuddling my coffee, andits not my proudest moment but Idont always want to play with my children. Making Play Purposeful All caregivers felt the need to engage in purposeful and educational play, considering play to be a learning opportunity. Instead of allowing play to run freely and be directed by their child, caregivers admitted to possessing some desire to maintain structure. Amy stated, I try and make my play with her as educational as possible and encourage communication through play. CAREGIVER ANXIETY AND PLAY 22 When asked if there were intentions and goals during play, Beth responded that she approaches play as a form of learning. Beth said, If were playing, its going to be educational. So, some sort of purpose. Fostering an educational and purposeful play time was highly important to the caregivers and the weight of this responsibility was described as exhausting. Denise admits, You need to be on it to have a successful playit just takes more energy and it just takes more time. In comparison to their children without a disability, the play is not centered around fun, but rather an emphasis is placed on making it educational and purposeful. Amy stated, Im putting a lot more work into it than I would if Allie didnt have Down syndromeif she didnt, we would actually just be playing for fun rather than trying to learn things. Beth compared feeling relaxed when playing with her neurotypical daughter to wanting to make play with Ben purposeful for him by saying, If we were just all sitting in her room and like just doing creative play and I could kind of follow her lead and elaborate on itwith Benthis is going to have like a purpose and a goal and like Im not gonna let you slip and just run the car back and forth. The pressure for purposeful play with their child created a difference in how caregivers play with their typically developing children. Facilitating play that is done right caused the caregivers to question their self-efficacy and abilities to meet their childs play expectations while preserving purposeful play. The anxiety involved in creating productive play is evident from the interviews and the impact is observed in the behaviors of both caregiver and child. All four caregivers used the word anxiety in reference to play with their child during the interview. Findings represent very close similarities between causes of anxiety and caregivers anxiety and the effects that their CAREGIVER ANXIETY AND PLAY 23 anxiety has on play with their children. Caregivers expressed how lack of time and difficulties with balancing caregiving and life demands impacts negatively their willingness to play with their child due to their lowered energy and patience levels. Caregivers also expressed their concerns with their childs negative behaviors and impaired communication skills and how this impacted their willingness to engage in play with them. The anxiety the caregivers experienced from attempting to make play productive, purposeful, and educational impacted the kinds of toys they choose to play with, as well as how much time they spent playing with their child. Caregivers also voiced how their anxiety was impacted by comparing themselves to other caregivers and play with other neurotypical children. Finding Joy in Play Despite the difficulties and anxiety that were found to come along with play, all four caregivers stated that they found joy while playing with their child. Each caregivers joy was discovered to be experienced in unique ways and most of the caregivers lit up when describing what they enjoyed most about playing with their child. All caregivers reported that they felt happy seeing their child laughing and enjoying themselves during play. Amy stated, I think my favorite part of playing with Allie is just seeing her little personality starting to come throughshes so bossy and just so fun loving and itit just makes my heart feel like its going to explode when we do things when we play together and shes talking gibberish or bossing me around telling me what to do or were dancing just it just makes me happy to see her happy and engaged. Beth also mentioned enjoying the playful side of her child. She stated, CAREGIVER ANXIETY AND PLAY 24 Hes just the funniest kid Ive ever met in the whole entire world, and he likes to do funny things like he like tries to play jokes on you or make you laugh instead, so I mean I just love that. Hes just so funny. He cracks me up. Carissa reported that, most days it makes me feel pretty darn good because hes so giggly and happy and like oh youre going to spend some time with me thats great. Denise stated how she finds joy in play through physical affection with her child, I would saywith Dylan its more of the cuddlingHe wants to be touched and things like thatDylan is justsmoochin like crazy and Im like alright take a break. But he just will lay on ya and just let you do whatever with him like, thats what I really love with him. Thats his like, just me and him time. Denise also reported finding fulfillment and joy when her childs play was successful, as shown through developing a new skill or doing an activity that the child has never completed before. Denise said, A lot of times you just have to realizewhat hes trying to do and then you can kinda figure out. And if I can figure out what hes talking about, hes almost even happy too cause Im understanding what hes saying. Like thats when its successful is when were both on the same page. Amy provides a great strategy for coping as she said, I desperately wanted it so I try even in those moments that I do start to get frustrated to think back and remember those times and it really does make a huge difference. It is important for caregivers to feel empowered to find joy in playing with their children in order to increase the well-being and confidence of both caregivers and children. CAREGIVER ANXIETY AND PLAY 25 Figure 2 Summary of Themes from Transcripts Discussion Causes of Anxiety Dabrowska & Pisula (2010) found that the additional responsibilities of caring for a child with a disability impacted the caregivers stress significantly. The caregivers from our study reported feeling like they did not have enough time to play with their child because their time was being consumed with other responsibilities, such as work, appointments, and increased caregiver demands. Similar to this, Murphy et al. (2007) found that caring for a child with a disability was stressful because the caregivers had little time to complete tasks and had increased anxiety because of additional demands. Similar to findings from Dabrowska and Pisula (2010), caregivers of children with ASD experienced stress that stemmed from their childs social deficits and communication barriers. CAREGIVER ANXIETY AND PLAY 26 Missiuna and Pollock (1991) found that play is impacted in a child with a disability for a variety of reasons, including the lack of age-appropriate communication; this is similar to the communication barrier that our caregivers discussed having with their child. Additionally, Lecavalier, Leone, and Wiltz (2006) found that mothers associated greater stress with behavioral problems, similar to what the caregivers in our study reported about how negative behaviors caused them to have anxiety. Our study found that parental anxiety increased due to feelings of not playing correctly or not meeting their childs expectations of play, preferred style of play, and needing to play right. Romn-Oyola et al. (2018) found that caregivers placed more emphasis on making progress toward skills and on integrating play into daily activities with their child. This is consistent with Brodins (1999) findings that play and learning are linked closely together and that children with disabilities have a large opportunity to learn through play. How Play is Impacted Due to causes of anxiety such as time constraints, child developmental delays and negative behaviors, and playing incorrectly, caregivers described how their play was impacted with their child. The caregivers from our study reported feeling like they did not have enough time to play with their child. Due to time restraints and other responsibilities, play was postponed or shortened; for example, extended mealtimes interrupted time for play with the child. Findings from our study also suggested that routines were very structured for these children and flexibility of adapting schedules may have led to decreased playtime or cause unwanted behaviors. The caregivers in our study consistently reported choosing educational play over pretend play or the need to make play purposeful, successful, or educational, due to the caregivers anxiety about their childs progress towards meeting developmental milestones. Caregivers CAREGIVER ANXIETY AND PLAY 27 consistently questioned whether they should allow free play or use play as an opportunity to make progress toward developmental milestones. This is similar to several of the parents in Graham, Truman, and Holgates (2014) study, who frequently reported that they incorporated therapy into play opportunities with their children. However, Goodley and Runswick-Cole (2010) felt as though combining therapy into play at home took away free choice of the child. In our study, caregivers reported that their child preferred to be in control of play, which was consistent with findings that play was centered around activities that the child enjoyed and was motivated to engage in, which elicited the most positive responses from the child (Romn-Oyola et al., 2018). Finally, Bentenuto, Falco, & Venuti (2016) found that when mothers played with their children with ASD or DS, they reinforced the play skills that their child excelled in, trying to match their childs style of play. This supports our findings that mothers tend to let their child control play and take the lead. Despite allowing children to have control, negative behaviors may present in play, such as aggression, spitting, and stubborn attitudes. Caregivers in our study indicated that when their child demonstrated some of these negative behaviors, they were less likely to engage in play with their child. Baker, Blacher, Crnic, and Edelbrock (2002) examined behavior problems exhibited during play by assessing 225 children with and without delays and the effects their behaviors had on the caregivers. According to the assessments used, the children with developmental delays showed more externalizing behavior and aggression and less emotional regulation (Baker et al., 2002). The researchers also discussed information about the correlation between the childs behaviors and the increase in stress for the family, which was similar to the testimonies of the caregivers in our study. Children with fewer demonstrated ASD behaviors were shown to have CAREGIVER ANXIETY AND PLAY 28 an increased likelihood for stronger verbal communication and comprehension skills, leading to increased pretend play performance (Lin et al., 2017). Finding Joy in Play All four caregivers found joy and satisfaction while playing with their child; this is consistent with the findings from Romn-Oyola et al. (2018), who found that mothers and fathers reported overall satisfaction when sharing about play with their child. These parents noted feelings of happiness when watching their child engage in play in meaningful ways (RomnOyola et al., 2018). Generally, the mothers of children with DS included in our study reported more silly play in comparison to the mothers of children with ASD, which increased the joy they found during play. Mothers of children with ASD reported play with more sensory components, including deep pressure through hugs and snuggling. This element of physical affection increased joy. The caregiver-child bond was a result of play that affected the mood of the participants and brought joy to them. Romn-Oyola et al. (2018) found that when parents figured out how to play with their child, the parent-child bond was enhanced. Our findings are consistent with findings of Romn-Oyola et al. (2018) because the caregivers discussed following their childs play patterns led to increased happiness when playing with their child. Ginsburg (2007) discussed how strong bonds between caregivers and their children are developed through play and caregivers are able to experience a deep sense of connection with their child as they can begin to understand and appreciate the ways that their child views the world. This caregiverchild interaction relates to the satisfaction of the caregivers in our study. It should be emphasized that there can be benefit to having a solid play pattern and routine, as well as being able to articulate to caregivers how positive play experiences can be of value to both them and their CAREGIVER ANXIETY AND PLAY 29 child. Having satisfaction in play can motivate caregivers to continue to enhance play experiences and see the positive results that can come from the strong connection they have with their child during play. Limitations Researchers in this study only interviewed the caregivers of four children between the ages of birth to five years and 11 months with Autism Spectrum Disorder and Down syndrome. Including a wider age range of children with a greater variety of diagnoses would allow for research to be more transferrable to caregiver anxiety and its impact on play in children with disabilities. Additionally, it would be beneficial to interview fathers of children with varying disabilities in order to see similarities and differences of how anxiety levels in mothers and fathers affect the way they play with their child. Furthermore, research could focus on incorporating families with additional siblings in order to learn more about if family dynamics and anxiety levels are associated with children with disabilities. We encountered some challenges when recruiting participants for this study. The small number of caregivers interviewed limited the transferrable results of our studys topic. Although multiple means for recruitment were utilized (social media, clinics, and email), only twenty-nine individuals completed the GAD-7 screening tool, nine offered a means of contact for an interview, and four committed to participating in the interview. Future Research Future research should include additional caregivers of children with varying diagnoses, including motor disabilities, to encompass a greater variety of conditions in order to draw conclusions to contribute to this important topic in literature. Involving a greater spectrum of pediatric diagnoses to assess caregiver anxiety will provide further evidence of how childrens CAREGIVER ANXIETY AND PLAY 30 play can be impacted by increased anxiety levels in caregivers. Childrens play contributes greatly to child development, thus future research should support the effectiveness of engaging parents and children in play in order to contribute positively to development. Future research should explore the effectiveness of interventions aimed at decreasing the anxiety of caregivers of children with disabilities to improve overall experiences of play for both the caregiver and the child. Caregiver anxiety and childrens play are both within the occupational therapy scope of practice. Mental health is important to client factors and play is an ADL that children need to participate in to grow and learn to contribute positively to healthy child development and achieving developmental milestones. Conclusion Caregivers experienced anxiety when trying to make play purposeful and encountered increased caregiving demands associated with having a child with a disability. The level of caregiver anxiety was affected by feelings of not playing with their child in ways the child desired, experiencing pressure of adding educational components into their childs play to make play purposeful, and feeling overwhelmed with the additional caregiving demands and finding balance among their daily lives. However, caregivers still find joy in seeing their child succeed in play or progressing developmentally through play. The caregiver-child play bond is to be cherished and recognized as a key component of development. Joy found in play will motivate caregivers to continue to participate in play experiences with their child, leading to positive outcomes and a strong connection between caregiver and child during play. CAREGIVER ANXIETY AND PLAY 31 References Baker, B.L., Blacher, J., Crnic, K.A., & Edelbrock, C. (2002). Behavior problems and parenting stress in families of three-year-old children with and without developmental delays. 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