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... Running head: PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 1 Occupational Therapy Practitioners Perceptions of the Utilization of Three-Dimensional Printing in Upper Extremity Practice Kelsie A. Harper, Jordan Hillenburg, Julie M. Baughman, Haley Danhof, & Lexi Ferguson December 14, 2018 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: Erin K. Peterson, DHSc, OTR, CHT and Kate E. DeCleene Huber, OTR, MS, OTD PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 2 A Research Project Entitled Occupational Therapy Practitioners Perceptions of the Utilization of Three-Dimensional Printing in Upper Extremity Practice 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, Jordan Hillenburg, Julie Baughman, Haley Danhof, & Lexi Ferguson 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 PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 3 Abstract Three-dimensional (3D) printing technology is thought to enhance developments in the medical field by printing products for the use of patients and health care providers. Researchers have investigated the use and impact of 3D printing technology in different health care professions; however, research regarding its use in occupational therapy practice, specifically upper extremity rehabilitation, is in early stages. Additionally, the perceptions occupational therapy providers have concerning the use of 3D printing in practice are currently unknown. In this study, investigators explored the perceptions and applications of 3D printing technology among occupational therapy practitioners through an online survey. Researchers received 268 completed surveys from participants who met inclusion criteria and analyzed responses using a mixed methods approach. Only seven participants (2.61%) reported using a 3D printer in their practice to print items such as prosthetics, orthotics, educational tools and models, and assistive devices. Non-users of the technology varied in their opinions regarding the potential impact 3D printing technology would have on their clinical practice. Furthermore, three themes emerged as barriers to implementing 3D printing into practice: 1.) lack of knowledge, 2.) clinician apprehension, and 3.) limited resources. The authors suggest there is a need for more research and provider education to improve understanding of 3D printing technology and its role in occupational therapy and upper extremity rehabilitation. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 4 Occupational Therapy Practitioners Perceptions of the Utilization of Three-Dimensional Printing in Upper Extremity Practice Technology has become an integral component to the daily lives of all people and is changing the ways of health care (Smith, 2017). One specific technology is three-dimensional (3D) printing (Ventola, 2014). 3D printing, also referred to as additive manufacturing or rapid prototyping, is thought to enhance the developments in the medical field by printing products for the use of both patients and health care providers (Bagaria, Rasalkar, Bagaria, & Ilyas, 2011). The process begins with a 3D image taken from a scanner or computed tomography (CT) image, and ends with a tangible 3D model created with layers of plastic, thread-like filaments (Bagaria, Shah, Chaudhary, Shah, & Bagaria, 2015). 3D printing technology has many diverse applications in the medical field and among health care professionals (Bernhard et al., 2015; De Crescenzio, Fantini, Ciocca, Persiani, & Scotti, 2011; Papandrea & Chen, 2014; Qiao et al., 2015; Rengier et al., 2010; Salmi, Paloheimo, Tuomi, Ingman, & Mkitie, 2013; Salvador & de Menendez, 2016; Silva, dos Santos, Souto, de Araujo, & da Silva, 2013; Starosolski, Kan, Rosenfeld, Krishnamurthy, & Annapragada, 2014; Yanping, Shilei, Xiaojun, & Chengtao, 2006). Although there is an abundant amount of research on 3D printing technology use in health care, many questions exist surrounding its utility regarding cost and time-effectiveness, as well as the durability of the printed products compared to traditional production methods (Cazon, Kelly, Paterson, Bibb, & Campbell, 2017; Fenske, 2014; Ganesan, Jumaily, & Luximon, 2016; Hagedorn-Hansen, Oosthuizen, & Gerhold, 2016; Herbert, Simpson, Spence, & Ion, 2005; Schrank & Stanhope, 2011; Zuniga et al., 2015). In addition, the potential impact on patients and health care providers is still being examined (Herbert et al., 2005; Wagner, Dainty, Hague, Tuck, & Ong, 2008). Further research in these areas is needed to better inform health care PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 5 providers of evidence-based practices to enhance patient-centered care and outcomes (Gibson, Woodburn, Porter, & Telfer, 2014; Silva et al., 2013; Zuniga et al., 2015). In his Eleanor Clarke Slagle Lecture, Smith (2017) challenged occupational therapy (OT) practitioners to continue integrating knowledge and skills of technology into practice due to its abundance in society; however, in the field of OT specifically, 3D printing technology use is limited and not yet mainstream (Ganesan et al., 2016; Gibson et al., 2014). In reviewing published literature, occupational therapists have used 3D printing in the making of orthoses (Ganesan et al., 2016; Huotilainen et al., 2014; Li & Tanaka, 2018; Paterson et al., 2015), adaptive equipment (Ganesan et al., 2016; Huotilainen et al., 2014;), rehabilitation tools (Bagaria et al., 2015), and assessment tool supplies (Mailloux, Parham, Roley, Ruzzano, & Schaaf, 2018). However, the perceptions occupational therapists have concerning the integration and use of 3D printing in practice are currently unknown. Therefore, the purpose of this study was to examine current uses of 3D printing in upper extremity rehabilitation by OT practitioners as well as investigate the perceptions they have regarding the technology. Literature Review What is 3D Printing? 3D printing technology is widely-regarded as a profound scientific triumph due to the ability to create and print a variety of physical objects from a digital image or design (Aufieri, Picone, Gente, & Paolillo, 2015; Bagaria et al., 2015). Images can be uniquely created by skilled technicians or obtained through various methods including 3D modeling software or 3D scanners (Aufieri et al., 2015). The 3D printer enables the object in the image to become tangible by printing multiple, overlapping, and precise layers of a plastic, thread-like material into the specified design (Bagaria et al., 2015; Fitzpatrick, Mohanned, Collins, & Gibson, 2017). The 3D PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 6 printing process is relatively fast and often considered to be time-effective when evaluating the finished products performance and use (Bagaria et al., 2011). 3D printing technology is especially of interest to those in the area of medical science due to its potential effects of faster production times, improved quality, and lower cost (Bagaria et al., 2011; Santos, Soares, Leite, & Jacinto, 2017). Specifically, the technological influence of 3D printing is becoming more prevalent in the health care field with several opportunities for use (Bagaria et al., 2011; Santos et al., 2017). Uses of 3D Printing in Health Care Utilization of 3D printing technology occurs in a variety of health care settings. Practitioners in medical fields such as orthopedics (Cha et al., 2017; Santos et al., 2017; Starosolski et al., 2014) and prosthetics (Lee et al., 2017; Liacouras et al., 2017; Rengier et al., 2010; Silva et al., 2013; Tanaka & Lightdale-Miric, 2016) have implemented 3D printing technology into their practice providing many benefits for both the medical professional and the patient (Bernhard et al., 2015; Rengier et al., 2010; Starosolski et al., 2014; Trace et al., 2016; Wagner et al., 2008). For example, 3D printing technology provides additional methods that allow providers to fully assess and understand results from CT scans and magnetic resonance imaging (MRI) by printing a physical model of a patients anatomy (Diment, Thompson, & Bergmann, 2017; Starosolski et al., 2014; Trace et al., 2016). According to researchers, this novel opportunity for tactile experience and visual representation enhanced the medical professionals understanding of complex anatomy and pathology and improved the patients understanding of the condition and operation plan (Bernhard et al., 2015; Friedman, Michalski, Goodman, & Brown, 2016; Rengier et al., 2010; Starosolski et al., 2014; Trace et al., 2016). In the field of urology, researchers investigated the impact of 3D printed models on patient PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 7 understanding and discovered a statistically significant (p < 0.05) increase in knowledge after surgeons educated patients about anatomy and physiology of the disease, tumor characteristics, and the operation plan with use of a 3D printed model (Bernhard et al., 2015). 3D printed models also allowed surgeons to design an operation plan and physically practice the surgical intervention prior to performing it on a patient (Rengier et al., 2010; Starosolski et al., 2014; Trace et al., 2016). Rengier et al. (2010) and Starosolski et al. (2014) discussed how surgeons refined and experimented with various techniques by using the 3D printed models to practice before surgical intervention was performed, thereby increasing their surgical skills and knowledge. Orthopedic surgeons specifically stated that 3D printed models allowed them to better correct conditions during operations (Starososki et al., 2014). Other surgeons reported 3D printed models to be useful for surgery preparation, reporting higher levels of confidence when entering the operating room to perform surgical interventions (Rengier et al., 2010; Tetsworth & Mettyas, 2016). Researchers in the field of prosthetics have also found 3D printing to be beneficial, especially in circumstances where traditional fabrication methods for a prosthesis are unsuccessful (Liacouras et al., 2017). In some cases, experts can use 3D printing technology to create a starting shape or pattern that can later be customized to a clients specific needs (Liacouras et al., 2017). However, 3D printed prostheses are currently somewhat limited in function due to unavailability of durable materials and lack of designer experience, especially in prostheses that require precise fitting and ability for load-bearing (Liacouras et al., 2017; Steenhuis, 2016). PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 8 Health and Safety Several researchers have investigated health and safety considerations regarding 3D printing technology (Cazon et al., 2017; Love & Roy, 2016; Ryan & Hubbard, 2016; Short, Sirinterlikci, Badger, & Artieri, 2015; Tanaka & Lightdale-Miric, 2016). Love and Roy (2016) and Ryan and Hubbard (2016) both revealed several harmful chemicals associated with 3D printing; however, the amount of chemicals was below the regulatory limit and therefore was not considered a significant hazard (Love & Roy, 2016; Ryan & Hubbard, 2016). In contrast, other researchers discovered safety concerns that were significant, including chemical interactions, contact with dangerous materials, and radiation exposure to the eyes with some types of 3D printers (Cazon et al., 2017; Short et al., 2015; Tanaka & Lightdale-Miric, 2016). For example, researchers found using ultraviolet radiation for liquid-based prototyping damaged the operators eyes (Short et al., 2015). In addition, researchers found that improper ventilation or disposal of wastes could lead to an accumulation of harmful chemicals within the area of the printer (Short et al., 2015). Advantages of 3D Printing Although safety concerns of 3D printing technology may exist, (Short et al., 2015; Tanaka & Lightdale-Miric, 2016), several potential advantages of the technology have been determined, including the ability to customize products with the reduction of fabrication time and expense (Cha et al., 2017; Chen et al., 2017; Fitzpatrick, et al., 2017; Hagedorn-Hansen et al., 2016; Lee et al., 2017; Rho, Lee, Kim, Lee, Chang, 2017; Santos et al., 2017; Schrank & Stanhope, 2011; Swartz, Turner, Miller, & Kuiken, 2017; Tetsworth & Mettyas, 2016; Weller, Kleer, & Piller, 2015; Zuniga et al., 2015). Furthermore, many 3D printers are small and PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 9 relatively inexpensive, therefore they are easily integrated into existing workspaces (Bortolloto et al., 2016). Several researchers have found the cost of 3D printing materials to be lower than traditional fabrication methods (Hagedorn-Hansen et al., 2016; Lee et al., 2017; Portnova, Mukherjee, Peters, Yamane, & Steele, 2018; Rho et al., 2017; Santos et al., 2017; Schrank, & Stanhope, 2011; Thomas, 2016; Zuniga et al., 2015). Clients and practitioners can benefit from this technological gain as the production of devices such as prosthetics, rehabilitation devices, and adaptive equipment become more affordable with use of the technology (Herbert et al., 2005; Lee et al., 2017; Paterson et al., 2015; Rho et al., 2017; Silva et al., 2013; Silva et al., 2015; Zuniga et al., 2015). Additionally, the 3D scanning and storage of digital client data leads to the elimination of recasting of devices that are damaged or incorrectly fitted, decreasing both the cost of wasted materials and time spent on re-molding (Herbert et al., 2005; Santos et al., 2017). Several researchers have also determined the time required for printing 3D objects is more efficient than traditional methods of fabrication (Hagedorn-Hansen et al., 2016; Lee et al., 2017; Portnova et al., 2018; Santos et al., 2017; Schrank, & Stanhope, 2011; Tsai & Wu, 2014). Within the surgical field, researchers found it took less time when a 3D printer was used to create artificial bone (Tsai & Wu, 2014; Verstraete et al., 2016) and tissue (Chia & Wu, 2015), which shortened the overall time required for reconstruction and rehabilitation (Chia & Wu, 2015; Tsai & Wu, 2014; Verstraete et al., 2016). Additionally, 3D printing was found to be faster than traditional casting methods when manufacturing prosthetics and orthotics due to the digital scanning and printing occurring within the facility itself (Alam, Choudhury, Mamat, & Hussain, PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 10 2015; Hagedorn-Hansen et al., 2016; Herbert et al., 2005; Lee et al., 2017; Portnova et al., 2018; Wagner et al., 2008). In one study, researchers investigated possible benefits of a 3D printed prosthetic hand for children and found the method of production and materials needed were less expensive compared to non-3D printed methods (Zuniga et al., 2015). The 3D printed prosthetic hand required less time to fabricate due to the distance-fitting procedure, which involved designing the prosthetic through 3D scanning technology and was conducted off-site (Zuniga et al., 2015). Traditional methods of production, such as using a plaster mold, increased fabrication time due to the patient and health care professional needing to be in the same location at one time (Zuniga et al., 2015). Additional researchers investigated the design of ankle orthoses and reported improved time-efficiency, reasonable expenses, and opportunity for customization as benefits to 3D printed orthotics (Lee et al., 2017; Santos et al., 2017; Schrank & Stanhope, 2011). Implications in Occupational Therapy 3D printed products such as orthotics, prosthetics, and adaptive equipment are becoming more prevalent in rehabilitation, especially due to reduced time and cost for patients (Bagaria et al., 2011; Hagedorn-Hansen et al., 2016). In the field of OT, assistive technology is integral in helping clients improve their performance in meaningful occupations (Rho et al., 2017; Swartz et al., 2017) and 3D printing technology used in this capacity may positively impact the OT profession (Bagaria et al., 2011; Ganesan et al., 2016). There is an abundant amount of research regarding 3D printing technology in different health care professions; however, research regarding the use of 3D printing technology in OT is in early stages (Ganesan et al., 2016). In addition, there is limited research about the utilization of 3D printing technology specifically in upper extremity rehabilitation. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 11 As stated in the Occupational Therapy Practice Framework (OTPF), upper extremity rehabilitation is valuable and important because it aligns with the client-centered focus of OT which is the therapeutic use of everyday life activities with individuals or groups for the purpose of enhancing or enabling participation in roles, habits, and routines in home school, workplace, community and other settings (American Occupational Therapy Association [AOTA], 2014, p. S1). The authors of the OTPF best describe the goal of OT as giving the client the ability to achieve the best possible health, well-being, and participation in meaningful occupations of daily and assistive technology may be necessary to help clients accomplish this goal (AOTA, 2014). As previously stated, research on the use of 3D printing in upper extremity rehab is scarce, and as a result, occupational therapists perceptions of the technology are largely unknown (Ganesan et al., 2016). Therefore, the aim of this study was to investigate current uses of 3D printing technology in upper extremity rehabilitation and discover the perceptions that OT practitioners have regarding the technology. Methods Sampling Procedures Researchers at the University of Indianapolis obtained email addresses of prospective participants from the publicly-accessible member directory on the American Society of Hand Therapy (ASHT) website (ASHT.org). Participants met inclusion criteria if they were 18 years of age or older, practicing in the United States, and a licensed occupational therapist. Participants also had to state agreement with the informed consent document to begin the survey which included disclosure of risks and/or possible discomforts associated with the study, data security procedures, and how to contact the principal investigator (PI) if needed. Participants who did not provide consent were not allowed to continue with the survey. Researchers instructed PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 12 participants to access and complete the electronic survey within four weeks. Those who did not initially complete the survey received two subsequent reminder emails in three-week increments. The University of Indianapolis Human Research Protection Program approved the study with exempt status. In total, researchers distributed electronic surveys to 2,206 valid email addresses belonging to members of ASHT after excluding those with no email address listed and subtracting duplicate email addresses. Researchers hoped to have 13.50% (n = 309) of surveys completed and returned to develop valid and responsive results (Stein, Rice, & Cutler, 2013). Researchers received 287 completed responses leading to a 13% overall response rate. Of the total number of surveys started (n = 349), 287 (82.23%) were completed. Data from partial responses were not analyzed. Additionally, responses from participants practicing outside of the United States and/or practicing therapists who were not occupational therapists were not included in data analysis. Survey Development Utilizing a mixed methods approach, researchers designed an electronic survey consisting of multiple choice and open-ended questions to investigate perceptions and applications of 3D printing based on information gathered through a review of the literature. The researchers used Qualtrics for survey design to keep information anonymous, including internet protocol (IP) addresses. Two content experts, occupational therapists practicing in hand therapy, reviewed the survey prior to distribution. The researchers incorporated their feedback on survey content prior to releasing the survey; the content experts were subsequently removed from the participant contact list. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 13 Data Analysis Researchers utilized software capabilities in Qualtrics to analyze quantitative data through descriptive statistics. Some questions allowed participants to select multiple answers; therefore, the frequency of responses for these questions exceeded the number of total respondents. Several questions were designed to maintain inclusion criteria or deemed highly important to the studys purpose by the research team. These specific questions were labeled mandatory response and participants had to answer before proceeding with the survey (Table 1). The research team analyzed the open-ended survey responses using inductive analysis and investigator triangulation (Stein, Rice, & Cutler, 2013). Data were first examined individually and then as a group to determine common themes and codes. Once themes were discussed and agreed upon by the researchers, each researcher coded all qualitative data according to the named themes. Researchers maintained coding consistency by clarifying with the group and concluding on an appropriate theme. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 14 Table 1 Mandatory Response Questions (n = 268) Do you currently practice in the United States? Questions Asked to All Participants (n = 268) What is your health care profession? What is your age in years? Are you a Certified Hand Therapist (CHT)? On average, what percentage of your caseload is reimbursed by the following? Do you use a three-dimensional (3D) printer in your practice as an OT? Questions Asked to Those Not Using 3D Printer in Practice (n = 261) Do you have a 3D printer available for use at your work site? Do you think 3D printers would have an impact on clinical practice? Do you have any health or safety concerns in regard to using a 3D printer in practice? Questions Asked to Those with Access but Not Using 3D Printer in Practice (n = 1) Why do you not use the 3D printer? Questions Asked to Those Using 3D Printer in Practice (n = 7) On average, what percentage of items are customized for clients as opposed to massproduced? Have you found any health or safety implications when working with a 3D printer? PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 15 Results Demographics Of the 287 completed surveys, 93.37% (n = 268) met inclusion criteria and were considered for further data analysis. The bulk of respondents reported practicing in the Northeast (25.28%, n = 67), Midwest (23.02%, n = 61), and Southeast (20.75%, n = 55) regions of the country (Table 2). Almost half of the participants were between the ages of 53 and 71 years (40.89%, n = 110), and most participants had between 11 and 30 years of experience working as an occupational therapist (52.99%, n = 142) (Table 3). Table 2 Demographic Information: Current Practice Regions (n= 265) Practice Regions n % Pacific 36 13.58% West 24 9.06% Midwest 61 23.02% Northeast 67 25.28% Southeast 55 20.75% Southwest 22 8.30% PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 16 Table 3 Demographic Information: Number of Years in Practice (n= 268) Years in Practice n % 5 or below 33 12.31% 6-10 23 8.58% 11-20 71 26.49% 21-30 71 26.49% 31-40 60 22.39% 40+ 10 3.73% Of the respondents, 83.96% (n = 225) were Certified Hand Therapists (CHT). Participants also reported certifications held in addition to the CHT. Of those who answered the question, 29.21% (n = 78) reported additional upper extremity training that resulted in certification such as Certified Lymphedema Therapist, Instrument Assisted Soft Tissue Mobilization (Graston Technique or Astym Soft Tissue Therapy), and/or Kinesio Taping Method. Respondents were asked to list their certifications in a follow-up question. Additionally, respondents selected their current primary practice setting using AOTA's terminology (AOTA, 2014). Of the respondents who answered, most practiced in a hospitalbased outpatient (44.30%, n = 35) or freestanding outpatient (45.57%, n = 36) facility. In addition, participants reported the average number of hours worked per week in direct patient care, with most respondents spending 35 to 40 hours (34.08%, n = 91). Respondents were asked to report their entry-level degree into the OT profession with the majority of respondents, PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 17 59.93% (n = 160) having a bachelor's degree, 36.33% (n = 97) having a master's degree, and 3.75% (n = 10) having a doctoral entry-level degree. Of the 268 valid respondents, only 2.61% (n = 7) reported using a 3D printer and associated technology in their practice as an occupational therapist. Of these seven participants, only three (42.86%) had access to a printer on site, while four (57.14%) did not. From the remaining participants who did not use a 3D printer (97.39%, n = 261), only six (2.30%) reported having a 3D printer available to them at their worksite; another six (2.30%) were unsure if they had access to the technology. Current Applications and Impact on Practice Users of 3D printing technology (n = 7) defined the products they printed for use in their OT practice. These included prosthetics (42.86%, n = 3), orthotics (42.86%, n = 3), educational tools and models (28.57%, n = 2), and assistive devices (adaptive equipment) (28.57%, n = 2). Respondents also delineated which factors influenced their decision to use a 3D printer. The majority of respondents reported that customization (85.71%, n = 6) influenced their decision. Participant A stated technology that allows to design (or print from ready-to-print files) prototypes or end-use objects that can be easily customized is incredible! Participant B stated the ability to make sizing changes or add a logo in an instant influenced the decision to use a 3D printer. Additionally, three respondents (42.85%) reported cost influenced their decision to use a 3D printer. Participant A stated, particular assistive devices, educational models, etc. can be created with a 3D printer at a fraction of the cost to purchase from a vendor. Participant B reported time and stated, it takes less time to print a model and mass produce it vs. making models out of clay. Participant B also stated it gave the ability to prototype designs. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 18 Respondents were asked to rate to what extent using a 3D printer impacted their practice on a scale of 0 (greatly diminished) to 10 (greatly enhanced). Three participants (42.86%) thought the printer greatly enhanced their practice, one participant (14.29%) thought the printer enhanced practice, and three participants (42.86%) felt neutral about the printers impact. None of the respondents reported that using a 3D printer diminished their practice. Respondents were also asked to describe how a 3D printer has impacted their practice. Participant A stated use of 3D printing to create educational models to enhance student learning and assistive devices, while Participant B stated I use my models now to educate my patients, who in turn, do better in therapy because they too have a better understanding of their bodies and [injuries]. Participant C stated 3D printing offered another option to [patients] in terms of cost and customization. Participant A reported 3D printing impacted practice through the creation of a personal invention. Participants who used a 3D printer in practice were also asked if the use of the technology impacted direct care time with clients. Three participants (42.86%) stated use of the 3D printer allowed more time in direct client care, two participants (28.57%) felt the 3D printer did not affect time spent with clients in any capacity, and two participants (28.57%) were unsure. No participants felt the use of a 3D printer decreased time for direct care. Furthermore, four of these participants (57.14%) reported spending an average of at least 30 hours per week in direct client care, with one participant (14.29%) working more than 40 hours per week. Possible Applications and Impact on Practice In general, the 261 participants (97.39%) who did not use a 3D printer in OT practice had similar ideas regarding utilization of the technology. A large number of respondents (43.30%, n = 113) stated 3D printing custom orthoses for clients as a possible application, though opinions PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 19 were quite varied and will be discussed further in this manuscript. Many participants (20.69%, n = 54) also mentioned printing adaptive equipment and other assistive devices for client use. Only a few participants reported the technology could be used for educational tools and models (1.53%, n = 4) and for prosthetics (5.36%, n = 14). Furthermore, 14.18% of respondents (n = 37) stated they were unsure how a 3D printer could be utilized in occupational therapy practice. Over half of participants (52.87%, n = 138) who did not use a 3D printer thought the technology would influence clinical practice, as compared to 8.43% (n = 22) who did not think practice would be impacted, and 38.7% (n = 101) who were unsure. Of those who believed practice would be impacted by the technology, 43.48% (n = 60) thought the printer would have a neutral effect on their practice. Most respondents, 46.38% (n = 64), thought 3D printers would enhance or greatly enhance their practice, and only 10.14% (n = 14) thought the printer would diminish or greatly diminish practice. Additionally, participants who did not use the 3D printer were largely unsure if use of the technology would have an impact on time spent in direct care with clients (56.93%, n = 78). Of those who thought utilization of the printer would affect time spent with clients, 18.25% (n = 25) stated they would have more time for direct care and 13.14% (n = 18) stated they would have less time for direct care. Barriers to Implementing 3D Printing Technology in OT Practice During data analysis, three broad themes emerged regarding why OT practitioners were not using 3D printers and associated technology in practice: 1.) lack of knowledge, 2.) clinician apprehension, and 3.) limited resources. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 20 Lack of Knowledge The majority of participants who did not use a 3D printer specifically stated their limited knowledge (64.14 %, n = 161) as one reason that prevented them from using the technology in practice. Additionally, 81.23% (n = 212) of participants answered unsure to at least one of three key questions: (a) what practice settings do you think could use a 3D printer to influence patient care, (b) do you think 3D printers would have an impact on clinical practice, and (c) do you have any health or safety concerns in regard to using a 3D printer in practice. After counting each participant only once, a total of 93.49% (n = 244) of participants who did not use a 3D printer in practice reported limited knowledge regarding the technology in some form. This theme was reciprocated throughout open-ended responses by participants who reported [I] didnt know there was such a thing and [I am] not sure how its used or what I would use it for. Three participants (1.15%) specifically stated the reason for their unfamiliarity was limited available research as to how the technology would benefit the profession. Another participant stated I have not read any research to support its use over the skill of a CHT to fabricate a custom orthosis. Clinician apprehension. Participants who did not use a 3D printer also expressed apprehension to using it in clinical practice. During the coding process, researchers found two sub-themes or reservations OT practitioners had regarding the technology: 1.) 3D printing technology could potentially infringe upon the skill set of a licensed and certified OT practitioner and 2.) the 3D printing process and fabricated items may be unsafe or cause harm for clients and/or themselves. Of the 138 (52.87%) current non-users who believed 3D printing would impact OT practice, 18.12% (n = 25) expressed concern that the technology may encourage non-skilled PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 21 users to fabricate common therapy items and/or detract from the expertise of occupational therapists specifically related to fabrication of custom orthoses. One participant stated concern about the general lay person creating orthoses and marketing as off the shelf products or setting up shop without the added treatment knowledge. Another respondent stated, I feel that part of what makes us special as practitioners is that we have the skills to make custom splints [orthoses]. I fear that 3D printers could take that away from us. Echoing this viewpoint, another participant stated that 3D printing technology might lead to a lack of creativity fabricating [orthoses]. A third participant stated the use of a 3D printer to fabricate orthoses, seems counterproductive, [and I] prefer to fabricate other ways. In contrast however, several participants who did not use the technology in practice reported potential benefits (34.09%, n = 30) to use of 3D printers to fabricate custom orthoses. One participant stated a 3D printer could increase ease/speed of splinting. Another stated that use of a 3D printer could reduce time spent in fabrication of splints as well as offer more variety of splints, reduce the cost of splints, [and] reduce wear on therapist hands. One participant mentioned that 3D printed orthoses would be more beneficial over traditional thermoplastic and stated, Fabricating custom orthotics is a time-consuming, in-exact [sic] practice. It takes away much needed direct patient care. Thermoplastic material is hot, ugly, and we have poor compliance in our hot climate. I think 3D printed orthotics would save time, allow for more 1-1 patient time, and improve compliance due to improved comfort and fit. Another participant stated that the technology would open a whole new realm of possibilities for orthotics. Additionally, researchers asked participants to report any concerns regarding the safety of the printer and its printed products. Of the 261 total participants who did not use a 3D printer, PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 22 57.85% (n = 151) did not express any safety issues, while 9.20% (n = 24) reported having concerns about safety, and 32.95% (n = 86) reported being unsure of safety issues. Of the participants who expressed specific safety concerns, five responses (20.83%) included a common worry of fumes given off by the printer and need for proper ventilation. Specifically, one participant who did not use a 3D printer in practice noted having fear related to carcinogens released by the 3D printer, and another individual who did not use a 3D printer in practice stated concern about safety of printing in a non-ventilated area. Another potential issue noted by 58.33% (n = 14) of non-user participants was related to the overall safety of the printed product. For example, one respondent stated worry of any patient allergies to materials, sharps/detachable pieces [and] general cleaning, and maintenance of device. Five respondents (20.83%) also reported common anxieties regarding making modifications to orthoses after being printed. One participant stated, Splints [orthoses] cannot be modified to easily accommodate swelling changes or pressure areas. Eight participants (33.33%) echoed this concern regarding pressure areas and difficulty making modifications of 3D printed orthoses. Of the individuals who reported using a 3D printer in practice, four (57.14%) stated they have not found any health or safety implications, two (28.57%) did have safety concerns, and one (14.29%) was unsure of any concerns. Of the two participants who reported safety issues, Participant B specified concerns with fumes emitted by the 3D printer, difficulty with adjusting the printed product, overall fit of a printed orthosis, therapists printing products without adequate training, electrical shock, potential for hand burns, proper ventilation, and the safety of the printed item for patient use (e.g., sharp edges, allergies). Participant B continued to discuss concerns with the durability and strength of the product and reported potential safety issues with the tools used post-printing such as hobby knives, drills, and heat guns. Participant A noted fear PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 23 with the sharp edges of the finished product and questioned the safety of the printer itself stating the plate is hot" which could potentially lead to burns for an inexperienced user. Limited resources. From the 268 survey responses, 92.91% (n = 249) reported not having a 3D printer available due to lack of resources. Participants noted a variety of specific limited resources related to cost, time, and decision to implement was outside of clinician authority (Table 4). Table 4 Barriers to Implementing 3D printing (n = 519) Barriers n % Cost 146 28.13 Time 69 13.29 Knowledge 155 29.87 Not Required 85 16.38 Other 32 6.17 Unknown 32 6.17 Approximately half (54.63%, n = 146) of the participants who did not use a 3D printer in practice reported cost as a barrier to obtaining and/or using 3D printing technology, such as the upfront cost of the printer and materials. One participant reported a barrier was the cost initially for the system. Additionally, many participants (34.13%, n = 85) also stated they were not using a 3D printer because it was not required by their facility, or it was outside of their authority. One respondent stated, Not my decision in the clinic. Furthermore, 27.71% of participants (n = 69) stated insufficient time to learn the technology and 3D printing process. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 24 Applicable Practice Settings Each survey participant was instructed to select potential OT practice settings in which 3D printing may benefit patient care from the provided list. Of the 929 total responses, 17.65% (n = 164) selected freestanding outpatient, 16.47% (n = 153) selected hospital-based outpatient, 9.15% (n = 85) selected skilled nursing facility/long-term care, 8.72% (n = 81) selected hospitalbased inpatient, 7.75% (n = 72) selected academia, 5.38% (n = 50) selected home health, 4.31% (n = 40) selected community-based, and 1.83% (n = 17) selected mental health as potential settings in which 3D printers may be utilized. Additionally, the majority of respondents who used a 3D printer in practice (57.14%, n = 4) reported that a 3D printer could be beneficial in all OT practice areas. Participants also stated they have used the 3D printer in multiple settings including: hospital-based outpatient (11.11%, n = 1), freestanding outpatient (33.33%, n = 3), home health (11.11%, n = 1), academia (11.11%, n = 1), and other (33.33%, n = 3). The participants who selected other were asked to specify; Participant B reported use of the 3D printer in a student outreach clinic, Participant C stated use at a local library, and Participant E stated VA [Department of Veterans Affairs Hospital]." Discussion Through data analysis, researchers fulfilled the purpose of the study to examine current uses of 3D printing in upper extremity rehabilitation by OT practitioners as well as investigate the perceptions they have regarding the technology. The results of this study demonstrate that only a few OT and hand therapy practitioners were using 3D printing technology in their practice. The majority of participants surveyed were uninformed about its use or have apprehensions or restrictions integrating the technology into OT practice. Study authors identified limited knowledge and unfamiliarity about 3D printing as a prominent theme PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 25 throughout survey results. In addition, many non-user participants had misconceptions about 3D printing technology regarding its established benefits to use in health care. Lastly, participants who were using or familiar with the technology recognized safety concerns that may have implications for OT practitioners and their clients. Unfamiliarity and Misconceptions about 3D Printing The limited awareness and unfamiliarity by study participants of 3D printing technology was pervasive throughout survey results. The research team coded many of the open-ended comments made by participants as insufficient knowledge regarding the properties and applications of 3D printers. Additionally, a few participants (n = 7, 3%) stated they were unaware of any research that had been conducted regarding 3D printing and its use in OT practice. Furthermore, participants seemed to have misconceptions about the previously established advantages and disadvantages of 3D printing supported in the literature, including its cost-effectiveness, time-saving, and the ability to better customize products for client use. For example, 57.09% (n = 149) of participants not using a 3D printer, reported cost as a barrier to use; however, many researchers have previously reported that 3D printing can be less expensive than traditional methods of fabricating orthoses or other medical products (Hagedorn-Hansen et al., 2016; Lee et al., 2017; Rho et al., 2017; Santos et al., 2017; Schrank, & Stanhope, 2011; Silva et al., 2015; Thomas, 2016; Zuniga et al., 2015). Additionally, it has been established that use of a 3D printer over time is cheaper than traditional methods of product fabrication even after factoring in the upfront cost of purchasing the printer and associated supplies (Hagedorn-Hansen et al., 2016; Lee et al., 2017; Santos et al., 2017; Schrank, & Stanhope, 2011; Thomas, 2016; Zuniga et al., 2015). PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 26 Previous researchers have also found that use of 3D printing technology can be more time efficient (Hagedorn-Hansen et al., 2016; Santos et al., 2017; Schrank & Stanhope, 2011). In these studies, researchers qualify time-efficient as reduced production time compared to traditional methods of fabrication, mainly for prosthetic devices and lower extremity orthotics. It is important to clarify and understand that this differs in meaning for OT practitioners, especially those who fabricate custom upper extremity orthoses out of low-temperature thermoplastics. In our study, 28.35% (n = 74) non-user participants reported time was a barrier to using a 3D printer in practice. One participant stated, time to print 3D [sic] is longer than I can make an orthosis. Li & Tanaka (2018) reported that 3D printed orthoses can take approximately two to five hours to print, which does not include the time needed to obtain a 3D scan of the clients limb, designing the orthosis model using computer-aided design (CAD), and post-printing procedures such as removing rough edges and supports. Not mentioning the obvious need for the clinician to possess the skills to follow and be successful in this modeling process, a two to five hour printing time is significantly longer than the approximately 20 minutes it takes to fabricate an orthosis out of traditional thermoplastic (Li & Tanaka, 2018). While 3D printing a complete custom orthosis is slower compared to use of thermoplastic, there is potential to mass-print portions of orthoses, such as outriggers or hinges for mobilizations needs, that may save time overall in the fabrication process. It should also be noted that it does take many hours of time upfront to learn and become proficient in 3D printing technology before one can start printing products easily and for optimal patient use. Li & Tanaka (2018) have developed a programmable 3D modeling technique to help circumvent this issue by including engineers in the CAD process; however, it is still too lengthy to replace traditional methods for emergent client needs. PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 27 Previous researchers have also established the ability to customize items more easily is a benefit to use of 3D printing technology (Li & Tanaka, 2018; Liacouras et al., 2017; Santos et al., 2017; Schrank & Stanhope, 2011; Smith, 2017; Ventola, 2014; Weller, Kleer, & Piller, 2015; Zuniga et al, 2015). The majority of our participants using a 3D printer reported customization as an influence in their decision to use a 3D printer (85.71%, n = 6) and mentioned the ease of printing customized products for clients. Participants we surveyed who did not use a 3D printer stated one way to use the technology could be to fabricate custom orthoses (43.30%, n = 113) and assistive devices (20.69%, n = 54). Due to the time barriers mentioned above when creating custom orthoses (Li & Tanaka, 2018), one may argue that 3D printing technology is not yet entirely feasible for the practicing occupational therapist when utilized in this manner. However, there is potential for creating customized versions of adaptive equipment and other assistive devices that may be more beneficial to improve a clients independence compared to an off-theshelf item (Ganesan et al., 2016). Furthermore, many clients have complex and multiple needs and a truly customized assistive device for that individual client may not be available to purchase, yet available through 3D printing technology. Clinicians can also customize 3D printed educational tools and models as well to reflect a specific clients unique anatomy, which may be more meaningful to the client and lead to improved understanding (Bernhard et al., 2015; Friedman, Michalski, Goodman, & Brown, 2016; Rengier et al., 2010; Starosolski et al., 2014; Trace et al., 2016). Current Implications for OT Practice Even though many non-user participants were unfamiliar or confused about 3D printing technology, 46.83% (n = 64) stated use of a 3D printer would enhance practice due to the purported benefits previously discussed. Only 12.31% (n = 17) participants thought the printer PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 28 would diminish practice. Overwhelmingly, participants reported fear of infringement upon the skills and scope of practice of OT practitioners and CHTs by users of the technology outside of the profession, especially in terms of orthosis fabrication. Participants felt this could also pose risks and safety concerns for clients if unskilled users were fabricating medical devices for client use (Lupton, 2014, 2016; Steenhuis, 2016). Additionally, study participants reflected on changes to the amount of available direct care time with their clients. One positive impact of using a 3D printer in practice is increased time spent on direct patient care (Liacouras et al., 2017). Three of our participants (42.86%) who use a 3D printer in practice stated using the 3D printer increased available time spent with their clients. Of our participants who did not use a 3D printer and thought it would impact time with patient care, 18.25% (n = 25) stated it would increase time spent with patients. Thomas (2016) stated that practitioners have increased time for direct patient care when using a 3D printer in practice as it can decrease the time required to develop and manufacture medical devices. In regards to possible safety concerns, the issue of unfamiliarity and misconceptions about 3D printing continued to be present throughout survey results. Of all survey respondents, the majority 57.84% (n = 151) reported no safety concerns with using a 3D printer. Researchers acknowledge this lack of concern may be related to insufficient knowledge regarding 3D printing. Only 14 respondents (60.87%) not using a 3D printer expressed concern related to the overall safety of the product and materials for client use. In addition, respondents who did not use a 3D printer (22.73%, n = 5) reported concerns with making modifications to the product. In review of the literature, other researchers have stated 3D printing prosthetics and medical equipment allowed for proper customization and there were no concerns with the impact of material on the client (Tanaka & Lightdale-Miric, 2016; Ventola, 2014). This contradiction PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 29 likely exists due to the limited research on 3D printed materials and devices specifically for occupational therapy clients (Ganesan et al., 2016). Furthermore, 2% of all participants (n = 6) reported concerns over fumes emitted by the printer. Love and Roy (2016) and Ryan and Hubbard (2016) reported presence of chemical emissions from 3D printers, but called for more research into the implications of various material emissions. Love and Roy (2016) reported that those operating 3D printers should not be excessively concerned about operation of 3D printers as long as operators are using polylactic acid (PLA) plastic material and in an area that has sufficient ventilation. These researchers even stated that most new 3D printers have built in ventilation filters, though it is always safest practice to use 3D printers in well-ventilated rooms (Love & Roy, 2016). With this information, the use of a 3D printer in practice might be dependent on appropriate ventilated space within the facility. Further research and clarification on this possible health concern is needed to determine its relevance for occupational therapy practitioners and their clients. Limitations Researchers acknowledge limitations of the study. Limitations included having a small portion of participants currently using a 3D printer in practice (2.6%, n = 7), which may have led to limited data about the perceptions and current uses of a 3D printer in practice. Participants in the study were recruited due to their membership in ASHT and this may have excluded additional OT practitioners that use 3D printing technology in their practice. Considerations for Future Research Future researchers should investigate the influence of a 3D printer on OT practice and explore how 3D printed products could potentially affect a clients quality of life, occupational engagement, and occupational performance. Additionally, it will be important to discover how PERCEPTIONS OF THREE-DIMENSIONAL PRINTING 30 clients view the 3D printed products (adaptive equipment, orthoses) and gather insight regarding specific client needs relative to their daily occupations. Other areas of future research include investigating reimbursement procedures of 3D printed products for client use and determining the possible implications of using customizable and cost-effective 3D printed products in practice. The development of continuing education courses and additional practitioner education opportunities may help to rectify the limited knowledge about 3D printing that participants expressed directly and indirectly throughout the survey. The authors of this study recommend further research on 3D printing technology as it directly relates to OT and its implications on practice. Conclusion The purpose of this study was to investigate current uses of 3D printing technology in upper extremity rehabilitation and discover the perceptions that OT practitioners have regarding the technology. The results showed those who use a 3D printer in OT practice felt it gave them the ability to customize products while reducing cost and increasing time spent in direct patient care. Participants not using a 3D printer in practice reported the main barrier to its use was their lack of knowledge about the technology, partly stemming from limited research conducted and published about 3D printing technology effects and uses in OT practice. 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... Playing with a Child with Down Syndrome: The Anxious Mothers Experience Allison Betts, J. Paige Hoke, Marisa Kitt, Kristen Lundy, MacKenzie Sauer, & Jessica Schumm December 14, 2018 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. Alison Nichols, OTR, OTD Running head: ANXIOUS CAREGIVERS EXPERIENCE WITH PLAY 1 A Research Project Entitled Playing with a Child with Down Syndrome: The Anxious Mothers 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 Allison Betts, J. Paige Hoke, Marisa Kitt, Kristen Lundy, MacKenzie Sauer, & Jessica Schumm 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 ANXIOUS CAREGIVERS AND THEIR CHILD 2 Abstract Background: Play is an essential occupation for children and has a role in facilitating proper child development. The demands related to caring for a child with a disability can be anxietyinducing for some caregivers, which may impact how they play with their child. Study Aim: The purpose of the study was to explore the anxious caregivers experience of playing with their child with a disability. Methods: A case study design was used to explore the unique experiences of two mothers with 5year-old children with Down syndrome. Researchers used semi-structured interviews to gather information. An inductive analysis approach was used to derive themes from the data gathered. Findings: Qualitative data from the caregiver interviews centered around three themes: the need to make play educational or purposeful, comparing themselves to other families of children with disabilities, and overall happiness during play with their child in spite of their anxiety. Conclusion: When caring for a child with Down syndrome, anxiety may impact parent-child interactions during play. Play may feel more like a task and less like an enjoyable co-occupation. Caregiver anxiety is important to consider during occupational therapy intervention, as it may impact the caregivers overall quality of life, in addition to their childs play. ANXIOUS CAREGIVERS AND THEIR CHILD 3 Literature Review Play is defined as any spontaneous or organized activity that provides enjoyment, entertainment, amusement, or diversion (Parham & Fazio, 1997, p. 252). For children, play is a critical occupation that can provide developmental benefits (Graham, Truman, & Holgate, 2014). Children who have disabilities may experience difficulties engaging in this fundamental activity, which often leads to the need for parental facilitation (Bult, Verschuren, Jongmans, Lindeman, & Ketelaar, 2011). Another key difference regarding the play of children with disabilities is the unique forms of play that occur. Children with disabilities frequently participate in adaptive forms of play that may include play through communication, vicarious play, and therapy through play (Graham et al., 2014). Caring for a child with a disability can be an extremely demanding role (Bourke-Taylor, Howie, & Law, 2010). Caregivers must work to balance a variety of issues related to their child, which may include behavioral problems, educational concerns, and medical services (BourkeTaylor et al., 2010). Additionally, there may be challenges with the rest of their family and their home, such as financial problems (Bourke-Taylor et al., 2010). This combination of responsibilities placed on the caregiver frequently leads to mental health issues, such as anxiety and depression (Whaley, Pinto, & Sigman, 1999). Existing research provides data on how anxiety affects the caregivers themselves but lacks information on how it may affect interactions with their child, specifically related to play. Play for a Child with Disabilities The Americans with Disabilities Act (ADA) defines an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities (Americans With Disabilities Act, 1991, Section 12102). Occupational therapists label ANXIOUS CAREGIVERS AND THEIR CHILD 4 the ADAs phrase major life activities as occupations, or everyday activities that people do as individuals, in families, and with communities to occupy time and bring meaning and purpose to life (American Occupational Therapy Association [AOTA], 2014). Occupations are unique for every individual, based on cultural, personal, temporal, and virtual contexts, as well as the individuals physical and social environments (AOTA, 2014). The occupation of play, which takes many unique forms, is considered to be one of the most important occupations for children. It is also the occupation that is most likely to be affected for a child with a disability (Ginsburg, 2007). Developmental benefits. Play, which includes play exploration and play participation (AOTA, 2014), is an occupation that is essential to a childs development, providing benefits related to cognition, socialization, communication, and creativity (Fabrizi, Ito, & Winston, 2016; Missiuna & Pollock, 1991). Play helps children gain important skills such as working in groups, sharing, decision-making, and problem solving (Ginsburg, 2007; Missiuna & Pollock, 1991). Through play, children can discover and engage in activities related to their own unique passions, while also learning about the characteristics of objects in their environment (Ginsburg, 2007; Missiuna & Pollock, 1991). In addition, play can have benefits related to the academic environment, like enhancement of school readiness skills and the ability to learn (Ginsburg, 2007). Missiuna & Pollock (1991) also identified that children with physical disabilities may develop secondary disabilities if play deprivation occurs. These secondary disabilities include increased dependency on a caregiver, decreased intrinsic motivation, low self-esteem, and poor social skills (Missiuna & Pollock, 1991). Barriers to play and necessary adaptations. A child who has a disability may experience challenges related to play exploration and play participation. The impact of a ANXIOUS CAREGIVERS AND THEIR CHILD 5 disability on a childs capacity to play can range from mild to severe, depending on the type of disability and the type of play that is desired (Missiuna & Pollock, 1991). Existing research indicates that children with physical disabilities may face barriers with regards to their play activities (Bult et al., 2011; Missiuna & Pollock, 1991). According to Bult et al. (2011), children with physical disabilities are less likely to engage in play or leisure activities than their physically healthy peers. Common barriers to play include limitations imposed by caregivers such as being too overprotective during play, and personal limitations of the child such as limited physical mobility or communication skills (Missiuna & Pollock, 1991). Much of the existing body of research indicates that children with disabilities will require facilitation with their play activities (Bult et al., 2011; Graham et al., 2014; Missiuna & Pollock, 1991). These reasons may include lack of mobility, limited communication skills, impaired sensory abilities, and difficulty with motor skills, such as reaching and grasping (Missiuna & Pollock, 1991). There may also be intrinsic factors that can cause a child to need facilitation with play including lack of motivation and drive, withdrawaldue to frustration, and decreased concentration (Missiuna & Pollock, 1991). Environmental barriers such as not having a physically safe home or community can also limit the play activities of a child with a disability (Missiuna & Pollock, 1991). The experience of play can be adapted so that participation is possible for a child with a disability. Ways of adapting play may include facilitation of play by an occupational therapist or the childs caregiver, or expanding the concept itself to include unconventional ways of playing. Occupational therapists have the knowledge and skills needed to help create and maximize opportunities for play among children with disabilities (Missiuna & Pollock, 1991). Unconventional ways of playing that are likely to be more successful for children with ANXIOUS CAREGIVERS AND THEIR CHILD 6 disabilities include play through communication, vicarious play, and therapy in play (Graham et al., 2014). Play through communication refers to enjoyment and satisfaction gained from participating in playful conversations, while vicarious play is gaining the same enjoyment of play through watching and providing comments on the activity without physically participating (Graham et al., 2014). Therapy in play allows children to make their own choices in order to motivate them for therapy (Graham et al., 2014). Play among children with Down syndrome. Children with different disabilities experience unique challenges engaging in play with their caregiver. In a study conducted by Bentenuto, de Falco, and Venuti (2016), researchers found that children with Autism Spectrum Disorder (ASD) participate in more exploratory play than typically developing children or children with Down syndrome. However, findings of another study indicate that children with Down syndrome engaged in significantly more exploratory play with their mothers as opposed to play by themselves. Additionally, children with mothers who displayed higher sensitivity to their childs specific needs during play engaged in more symbolic play compared to children with mothers who displayed lower sensitivity to the childs needs (Gokhale, Solanki, & Agarwal, 2014; Venuti, de Falco, Giusti, and Bornstein, 2008). Children with Down syndrome display less advanced exploratory play skills when compared to children of similar cognitive abilities, which can be attributed to their attention, visual, physical, and cognitive deficits (de Falco, Esposito, Venuti, & Bornstein, 2010). Because of these deficits, children with Down syndrome may require increased caregiver facilitation during play to promote growth in play exploration skills. It is important to understand the unique needs of children with different disabilities so that the occupation of play can be adapted for successful participation for all children. ANXIOUS CAREGIVERS AND THEIR CHILD 7 Caring for a Child with Disabilities Although caregivers recognize that play is very important for their child, it is sometimes forgotten amidst a wide array of other responsibilities related to their childs health and wellbeing. A child with a disability will most likely require some level of assistance with activities of daily living (Ma & Mak, 2016). Children with disabilities often have special medical, educational, and developmental needs that must be coordinated by the caregiver. It is important that occupational therapists and other health professionals collaborate with caregivers to ensure they are appropriately involved in a childs therapy (Wilkes-Gillan, Munro, Cordier, Cantrill, & Pearce, 2017). These responsibilities vary based on the age of the child and severity of the childs disability, and usually require substantial physical, emotional, social, and financial resources (Murphy, Christian, Caplin, Young, 2006). While most caregivers perceive caring for their child with a disability as a natural responsibility, the situation may eventually become burdensome if lifelong care is necessary (Ma & Mak, 2016). Caregiver health concerns. The existing literature indicates that caregivers of children with disabilities are likely to experience declines in their own mental health and well-being. Because caregivers put in a significant amount of time, energy, and effort into another individual, they often are not able to care for themselves appropriately. The evidence suggests that caregivers of children with a disability, regardless of the differences in diagnosis, are at risk for both physical and mental illnesses, including chronic diseases, anxiety, depression, physical pain, sleep deprivation, and chronic fatigue (Murphy et al., 2006; Pedron-Giner, Calderon, Martinez, Garcia, and Gomez-Lopez, 2014). Anxious caregivers and their children. The caregiver-child relationship can have both positive and negative influences on the child. Caregiver anxiety may have an impact on the ANXIOUS CAREGIVERS AND THEIR CHILD 8 psychological health of the children for whom they are providing care (Whaley et al., 1999). Childhood is a critical time for rapid development, so children are especially vulnerable for developmental delay if their caregivers have a psychological disorder, such as anxiety or depression (Nicol-Harper, Harvey, & Stein, 2007). Studies show that anxious caregivers engage with their child less effectively (Nicol-Harper et al., 2007; Whaley et al., 1999). Anxious caregivers displayed less positivity and warmth when interacting with their children (He et al., 2014; Nicol-Harper et al., 2007; Whaley et al., 1999). These studies also found that children of anxious caregivers are at a higher risk of developing anxiety themselves (He et al., 2014; NicolHarper et al., 2007; Whaley et al., 1999). Research has shown that a positive caregiver-child relationship leads to better engagement in play (Wilkes-Gillan et al., 2014). One study reported that caregivers who are more sensitive and responsive to their childs needs would be more likely to search for play opportunities for their child (Fabrizi et al., 2016). The formation of this healthy relationship is important, regardless of the type of disability, in order to promote positive engagement in play. Study Aim The present study explored the anxious caregivers experience of playing with their child who has a disability. Previous studies indicated that a caregivers anxiety can affect performance in other activities of daily living, but there is limited data showing how a caregivers anxiety can impact their engagement with their child in play. There is strong existing evidence on the importance of play and the use of play-based interventions in therapy for children with disabilities. It is also clear that mental health issues, such as anxiety, are prominent among those who care for children with disabilities. ANXIOUS CAREGIVERS AND THEIR CHILD 9 Methods Theoretical Approach This study originally utilized a phenomenological approach in exploring the potential effects of a caregivers anxiety on their childs play. The purpose of phenomenology is to investigate the experience of individuals regarding a phenomenon of interest to the researcher (Daly, 2007). When exploring a potential link between caregiver anxiety and their childs play, one must first investigate how anxious caregivers play with their child and obtain data on this lived experience. Because no link has yet been made between caregiver anxiety and play with their child, the purpose of this study was to learn about the experiences of anxious caregivers in playing with their children. Due to a low participant response rate, the researchers gathered data utilizing a phenomenological approach but analyzed and present the data through a case study approach. The two participants had similarities in demographic information for both themselves and the children for whom they provided care. Instruments The Generalized Anxiety Disorder 7-item scale (GAD-7) was utilized as a screening tool for acceptance into the study. Participants completed it electronically through Qualtrics(R), an online survey software. This screening tool measures how severe the caregivers anxiety is, based off of their responses to each of the seven questions (Spitzer, Kroenke, Williams, & Lwe, 2006). Each item receives a score of 0-3. A score of 0 means the caregiver did not report anxiety about the listed item, and a score of 3 means the caregiver reported anxiety about the listed item nearly every day (Spitzer et al., 2006). An overall score of 0-4 indicates minimal anxiety, 5-9 indicates mild anxiety, 10-14 indicates moderate anxiety, and a score of 15-21 indicates severe anxiety (Spitzer et al., 2006). The GAD-7 is a valid and reliable screening tool for assessing the ANXIOUS CAREGIVERS AND THEIR CHILD 10 severity of generalized anxiety disorder (Spitzer et al., 2006). When comparing an individuals self-reported scores from the GAD-7 to a professionals diagnosis, Spitzer et al. (2006) found that individual self-reported scores from the GAD-7 indicated a level of anxiety similar to a mental health professionals diagnosis. The GAD-7 has strong criterion validity to support its use in identifying GAD cases (Spitzer et al., 2006). Participants Participants in this study had to be 18 years of age or older and care for a child with a disability under the age of 5 years and 11 months. Individuals also were required to understand and speak English fluently. Finally, participants had to score a 5 or above on the GAD-7, indicating that they have mild or greater anxiety. Recruitment methods included hanging flyers within the communal spaces of fourteen local pediatric outpatient therapy clinics, emailing members of the University of Indianapolis Community Patient Resource Group (CPRG), and posting on social media sites in order to target a wide variety of organizations and individuals to gather information from a diverse population. Twelve individuals completed the GAD-7. Of those, eight qualified for the study, and four participants provided an email address to be contacted about participation in an interview. Only two individuals scheduled an interview, and researchers conducted these interviews with two mothers who both had a 5-year-old child with Down syndrome. Study Design and Procedure This study received exempt approval from the University of Indianapolis Human Research Protections Administrator in the fall of 2017. The study was advertised actively for approximately six months. Following the completion of the GAD-7, those who met the inclusion criteria and provided an email address were contacted to determine their interest in participation. ANXIOUS CAREGIVERS AND THEIR CHILD 11 Those who scored a 4 or below on the GAD-7 were thanked for their interest in the study but informed that they did not meet the criteria to continue through the remaining portion of the study. The semi-structured interviews were led by the primary investigator, an occupational therapy faculty member with experience in pediatrics and qualitative research, and an occupational therapy student. Researchers began the interview by asking simple background questions to better understand the childs behavior and the caregivers anxiety. Questions were designed to learn more about the caregivers experience when playing with their child. Additional probing questions were asked as appropriate to each interview. Questions can be found in 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? Figure 1. Interview questions. This figure includes the questions asked during the interviews conducted by the researchers. ANXIOUS CAREGIVERS AND THEIR CHILD 12 Each interview lasted approximately 30-45 minutes. Each interview was audio-recorded and transcribed by the student researchers. In order to ensure safety and protection of the information gathered, transcripts were stored behind password-protected software that was only accessible by the research team. Data Analysis Qualitative data gathered during the interviews were analyzed using an inductive analysis approach, which provides a less restrictive environment to allow themes to emerge (Thomas, 2006). Researchers followed guidelines by Thomas (2006) to identify common themes from the two interviews. The goal of this research study aligns with the goal of inductive reasoning to describe an experience supported with emerging themes from the collected data (Thomas, 2006). The recorded interviews from this study were transcribed verbatim. Researchers independently read the transcripts and coded the data from each interview. After all independent coding was completed, the researchers discussed their findings as a group and agreed on 3 common themes; these themes are explored in greater detail below. Findings Case Study 1: Amy Amy (pseudonyms are used throughout), the mother of a five-year-old girl with Down syndrome, stated her child was a miracle because Amy had tried for a long time to become pregnant. Amy described her child as the light of her life, one who was very social and loved being around other people. Her daughter attended kindergarten, where she spent two-thirds of her day in a regular classroom and the last part of the day receiving one-on-one special education services. ANXIOUS CAREGIVERS AND THEIR CHILD 13 Amy described her childs daily routine and explained that she typically liked to play before and after school. Her daughters primary play activity was playing with different dolls through pretend play. She explained that she noticed that her daughter had an increased interest in interactive play with others since starting kindergarten. Amy noted that the family had a playroom at home with a toy kitchen, and that her daughter thoroughly enjoyed cooking and preparing pretend meals. Amy explained to the researchers some of the difficulties that her child experienced related to play. Her daughter struggled with speech, specifically expressive language. Amy explained that this made play more difficult because her daughter could not express to others how she would like to play. She stated that her child did well with receptive language when the instructions were kept short and concise. Her daughters difficulties with communication typically resulted in her mimicking and following the play of other children. She explained that when her daughter played with other children, she took the lead if the peer had a more passive personality, but she followed the leader if the peer wanted to dominate. Amy said that her daughter played well with others, especially her older stepsister. Amy enjoyed playing with her daughter and stated that she made play as educational as possible. She encouraged communication during play, but said that was difficult for her at times. When the topic of anxiety was directly addressed within the interview, Amy stated she felt like her anxiety came from constantly wondering if she was doing enough while playing with her child. She wished she did not have to worry about constantly making play educational. Amy stated, ...I feel like there are a lot of times that I would probably rather just be playing with her to have fun and I have that constant feeling of, Am I doing enough? In terms of the educational play, Amy tried to address communication, turn-taking, and understanding patterns. ANXIOUS CAREGIVERS AND THEIR CHILD 14 She felt like she put a lot of work into play with her child and might not have felt that pressure if her daughter did not have Down syndrome. Amy stated that play with her child who has Down syndrome looked very different from play with her typically-developing stepdaughter. She said her daughter struggled with fine motor play and often needed assistance with things like dressing dolls or cooking in her play kitchen. Researchers asked Amy what she would change about playing with her daughter, if anything, and she stated she felt it was hard to prioritize play. She 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... She said her daughter enjoyed playing by herself, but there were times when she wanted to play with Amy or her husband, and if they were in the middle of a certain task it became difficult. Amy described how comparisons to other families caused anxiety as well. She said, ...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 Im not doing that. She discussed that she thought many families may feel this way, and she felt that social media made the problem even worse. Amy stated how people shared so much on the internet, which sometimes was perceived as judgmental if parenting styles were different. The researchers concluded the interview by asking Amy about her favorite part of playing with her child. When she described her feelings during play with her child, Amy stated that she felt very happy. She said, it makes me feel fulfilled and I think part of that comes from the fact that I didnt even know if I was gonna be able to have a child, you know. Amy stated that she often reminded herself of this time when she became frustrated, and it helped her. She also described that she loved seeing her daughters personality come through during play, ANXIOUS CAREGIVERS AND THEIR CHILD 15 and said she is very fun-loving. Amy said, It just makes me happy to see her happy and engaged. Case Study 2: Beth Beth was the mother of a five-year-old boy with Down syndrome. He was the oldest of three children. Beth provided some medical history on her son, which included multiple heart surgeries and a six-month neonatal intensive care unit (NICU) stay followed by intensive therapies that he still received. Beths son attended preschool with a group of typically developing peers, where he also received school-based therapy services. She stated that her son was very social and felt that her sons gross motor abilities were his strength. Beth shared with the researchers what her familys daily routine looked like. Her son typically woke up very early and got ready for the day. He often played whenever he had free time, including after he completed his morning routine and before he left for school. When she described her sons play, Beth stated that he engaged in emerging imaginative and creative play with cars, kitchen, and food toys. She stated that his favorite game was hide-and-seek, and he enjoyed playing any game that involved a ball. When she compared her sons individual play to group play with his siblings, she stated, ...I have to imagine its pretty much the same, I mean sometimes its...a little bit of parallel play[where] they might be doing the same activity but just right next to each other. In terms of directing play, Beth described her childs ability to stand up for himself and converse with his siblings about how play should be done. When asked to describe her childs play with his typically developing peers, Beth stated that she recently observed him take a leadership role, while other times he followed his peers and jumped into the activity or game. Beths child also had the opportunity to play with other children with Down syndrome through a local organization for children with Down syndrome. She stated, we are ANXIOUS CAREGIVERS AND THEIR CHILD 16 there pretty often and... thats his happy place for sure. Beth stated she does not notice any differences in her sons play with other children with Down syndrome compared to his play with typically developing children. When asked about her play with her son, she stated that their play was intentional and educational. She often focused on having him use his own words and advocating for himself during social interaction; for example, when one of his siblings was taking his toys. She also stated that this was the type of play that she engaged in with her other children. Beth discussed how she let her other children lead the imaginative play, but with her son with Down syndrome, she tended to lead play more and pushed him to do more than just run the car back and forth. She also added that she felt like she pushed him in play because she felt that play was a strength of his, but she backed off when he became frustrated. She felt she could read her son well and adjust to his needs. When the topic of anxiety was directly addressed within the interview, Beth stated that she was not surprised by the results. She discussed how she felt hypervigilant with her sons behaviors. An example that she shared was when her son started to fidget, she immediately corrected him to encourage him to sit still, but when her typically-developing daughter fidgeted and twirled her hair, she was not alarmed by it in the same way. She also attributed this to the anxiety that she experienced when she noticed her sons potential development of a selfstimulating behavior. She added that you dont want to lose a moment to grow. Beth shared that some of her anxiety also came from her familys busy schedule that was largely filled with many opportunities for enrichment for her child with Down syndrome, as well as extracurricular activities for her other children. Beth sought out a specific school that more fully met her childs needs; however, it required a longer drive that took more time out of her ANXIOUS CAREGIVERS AND THEIR CHILD 17 day. She opted to remove her son from a developmental preschool where he had an Individualized Education Plan (IEP) and was receiving therapy services to go to a different school that she felt was a better fit for him. When asked how she would change play with her son if she could change anything, Beth responded by saying that she wished it could be more relaxed and laid back. However, when she let herself do this from time to time, she then reported feeling guilty, and felt as though she should be doing more, especially when it came to language and communication. Play was described almost as work, or therapy: We should be working on this and maybe somehow we should fit in... fine motor goal into this play or...It is hard to look at it as play. When she described her play with her son, Beth said she felt good, as well as relaxed. She aimed to make play funny and silly but stated that getting to this relaxed and silly point took a couple of years. Beth stated that she had to make this conscious choice to...not lead such a stressful life and give yourself grace and kind of bring down that anxiety level so that you can best be there for your child. Having had her child enrolled in school and many other programs also decreased Beths reported anxiety because she felt as though her son was learning a lot from these opportunities. She said that the team of people and influences in his life took some of the stress off of her. Beth stressed the importance of social support from the community but also said it can backfire, especially when she saw things on social media that other families were doing for their kids. When Beth compared herself to these other families on social media, she often acquired feelings of guilt and anxiety for not doing enough for her son to help him meet certain milestones. In the end, Beth described her favorite part of playing with her son as hearing his laughter and seeing his sense of humor. ANXIOUS CAREGIVERS AND THEIR CHILD 18 Themes After inductive analysis of the interviews, the researchers derived three themes from the data based upon the responses of Amy and Beth. The three themes identified included: play with a purpose, causes of increased anxiety, and caregiver happiness during play. These themes are utilized to guide discussion of the case studies further below. Discussion Play with a Purpose After analyzing interview transcripts, researchers concluded that the two mothers had similar thoughts and experiences when playing with their child with Down syndrome. Both Amy and Beth discussed trying to make play with their child educational and purposeful, noting that this pressure surrounding play could be contributing to their anxiety. Amy felt her anxiety derived from concern regarding if she was doing enough for her child to progress developmentally. Therefore, she has less time to play with her child leisurely because of the pressure she feels to make play educational and purposeful. She stated, I want it to be fun too, so trying to find that balance between making it productive play thats getting something and her just being able to have a good time. Both Amy and Beth mentioned that their children struggled with expressive language and fine motor skills during play. Both mothers discussed their tendency to put a greater emphasis on improving communication skills when they facilitate play with their child. This is congruent with the findings of Graham et al. (2014), who reported that some parents of children with a disability saw their childs play and therapy as one component, in that it combined the educational aspects of therapy into their childs play. Additionally, parents reported that they had to consciously make time for free play for their child (Graham, Truman, & Holgate, 2015). ANXIOUS CAREGIVERS AND THEIR CHILD 19 While both participants were highly involved mothers of 5-year-old children with Down syndrome, some differences were noted. The first notable difference was related to the mothers styles of facilitating play. Amy reported that she lets her daughter be more of a leader during play, while Beth likes to provide more guidance for her sons play. Although both mothers feel the need to make play educational and purposeful, Beth described taking more control when playing with her son, whereas Amy encouraged educational play tailored to her childs interests. When it comes to the participants feelings of anxiety, both mothers agreed that these feelings could be related to play; however, there were additional factors present. Causes of Increased Anxiety A contributor of anxiety that was discussed by both mothers was their tendency to constantly compare themselves and their family to other families of children with disabilities. Beth stated, ...you see on Facebook what everyone else is doing and then you know that...guilt or that anxiety can, like, increase. In comparison to other families, the mothers felt they maynot be providing enough play opportunities and different treatment strategies for their children. In addition to the commonality of making comparisons with other families, Amy and Beth described additional factors that contributed to their anxiety. Amy stated specifically that her anxiety stems from feeling like she does not have enough time to play with her child due to the time required to complete other parenting tasks. Existing research shows that these tasks, such as assisting with toileting, hygiene, and other healthcare needs, may get in the way of time for personal or leisure activity (McCann, Bull, & Winzenberg, 2016). Beth discussed two additional factors contributing to her anxiety: keeping up with her busy schedule and family demands and seeing her child participate in self-stimulatory behaviors. Sanders and Morgan (1997) found that parents of children who exhibited extreme behavioral problems such as self- ANXIOUS CAREGIVERS AND THEIR CHILD 20 stimulatory behaviors were found to have higher levels of stress. Beth appeared more anxious than Amy, which could be due to her child demonstrating self-stimulatory behaviors, having multiple children to care for, or constantly feeling the need to make play purposeful. Another notable difference between the two participants was that Beth described more qualities of her childs negative behaviors, which could potentially be contributing to her anxiety as well. The findings of the current study differ from the findings of a study completed by Dabrowska and Pisula (2010), who reported that parents of children with Down syndrome did not differ from parents of typically developing children. While Amy and Beth both demonstrated some levels of stress and anxiety related to caring for their children with Down syndrome, the results from Dabrowska and Pisula (2010) indicate that this may be atypical. This difference in findings may be due to the current study participants unique caregiving experiences, which could not be accounted for in the previously mentioned study. In contrast to Beths family demands and concerns with self-stimulatory behaviors, Amy was more anxious about her role as a mother and if she was doing enough for her child during play. Beth seemed slightly more confident in the opportunities she has provided for her child, mentioning that she did research on preschools in the area and that her son is now enrolled in a very specific preschool that she felt would best meet his needs. This is something that Amy did not mention and can be assumed that this is because she is satisfied with the school in which her child is currently enrolled. The mothers also differed in their choices to employ others to help care for their child; Beth employs a nanny, while Amy chooses not to do so. Overall Happiness During Play Despite the anxiety felt when comparing self to others, making play educational, and demanding schedules, both mothers still felt joy when they played with their children. Both ANXIOUS CAREGIVERS AND THEIR CHILD 21 participants were asked to explain their thoughts on how playing with their child makes them feel. They stated that playing with their child makes them happy. Beth described happiness during play with her child as, You cant help but smile when you look at his smile and hear his laugh. His smile is definitely contagious. Definitely. Amy stated that she enjoys being able to see her daughter happy when playing. She stated, How do I feel when I play with her? Good, like it always makes me so so happy and even those times that ... I dont wanna get out of this chair, I dont wanna do another puzzle, or I dont wanna play blocks, [but] once Im doing it, I feel very happy. Both mothers reported and demonstrated happiness when thinking about their child and the play that they experience together. Research shows that when mothers play with their child with a disability, they find enjoyment both in playing and seeing their child enjoy play (Buchanan & Johnson, 2009). Stainton and Besser (1998) also found that parents of a child with an intellectual disability felt that their child gave purpose to their family, and simply being in the presence of their child brought the parents great joy. Limitations The present study is limited in its generalizability due to the small, homogenous sample of participants. Both mothers had 5-year-old children with Down syndrome. The mothers were highly involved in the lives of their children, were very attuned to their childs needs, and expressed concerns relating to the type of play completed with their child. They both compared themselves to other parents of children with Down syndrome and had demanding schedules. While the small size and homogeneity of the sample helped researchers to make the decision to use a case study approach, it is seen as a limitation because it may not be representative of a broader population of caregivers of children with Down syndrome. This makes it difficult to generalize the results. ANXIOUS CAREGIVERS AND THEIR CHILD 22 Future research should include a larger sample size of parents with children who have a variety of diagnoses, as well as a more diverse sample with varying ages of children. In addition, future studies should observe play interactions between parents and children to obtain more quantitative results regarding anxious play experiences. It may also be beneficial to compare the findings of this study to play interactions among parents with children who are typically developing. Implications for Future Research The themes developed from these interviews demonstrate the importance of the role of the occupational therapist in providing services to caregivers and their children with Down syndrome. Occupational therapy offers a holistic approach to care, including psychosocial support for mental health of the caregiver, as well as interventions aimed at improving physical and cognitive limitations in a childs occupations, often with a focus on play. Occupational therapists can use their skills and knowledge to adapt play to make it developmentally beneficial for the child, as well as providing suggestions on improving mental health of caregivers. Occupational therapists must be aware of the potential for stress and anxiety among mothers of children with disabilities and take appropriate measures to screen these mothers utilizing methods such as interview or standardized assessments. Based on this data, occupational therapists can refer mothers to professional and community resources such as a clinical psychologists or caregiver support groups. By providing this support, occupational therapists can help mothers provide better care for their children with disabilities. Conclusion Caring for a child with Down syndrome can lead to many sources of anxiety that may impact parent-child interactions, specifically during play. Participants mentioned that they ANXIOUS CAREGIVERS AND THEIR CHILD 23 constantly felt the need to make play a learning experience, which may take away from the leisure aspect of play. In addition, managing a demanding schedule leaves less time to interact in play with their children. Participants also found themselves comparing their lifestyles to other families of children with a disability, which was believed to be a source of anxiety. It is important that occupational therapists consider the caregivers anxiety when treating children with disabilities as it has the potential to substantially impact the childs play, a crucial occupation for development. ANXIOUS CAREGIVERS AND THEIR CHILD 24 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 Americans with Disabilities Act of 1990, Pub. L. No. 101-336 2, 104 Stat. 328 (1991). Retrieved from https://www.ada.gov/pubs/adastatute08.htm#12102 Bentenuto, A., de Falco, S., & Venuti, P. (2016). Mother-child play: A comparison of autism spectrum disorder, Down syndrome, and typical development. Frontiers in Psychology, 7, 1829. doi: 10.3389/fpsyg.2016.01829 Bourke-Taylor, H., Howie, L., & Law, M. (2010). Impact of caring for a school-aged child with a disability: Understanding mothers perspectives. Australian Occupational Therapy Journal, 57, 127-136. doi: 10.1111/j.1440-1630.2009.00817.x Buchanan, M., & Johnson, T. G. (2009). A second look at the play of young children with disabilities. American Journal of Play, 2(1), 41-59. Bult, M. K., Verschuren, O., Jongmans, M. J., Lindeman, E., & Ketelaar, M. (2011). What influences participation in leisure activities of children and youth with physical disabilities? A systematic review. Research in Developmental Disabilities, 32, 1521 1529. http://dx.doi.org/10.1016/j. Ridd.2011.01.045 Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280. Daly, K. J. (2007). Qualitative methods for family studies & human development. Los Angeles, CA: SAGE Publications. ANXIOUS CAREGIVERS AND THEIR CHILD 25 de Falco, S., Esposito, G., Venuti, P., & Bornstein, M. (2010). Mothers and fathers at play with their children with Down syndrome: Influence on child exploratory and symbolic activity. Journal of Applied Research in Intellectual Disabilities, 23(6), 597-605. doi:10.1111/j.1468-3148.2010.00558.x 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, 7002220020. http://dx.doi.org/10.5014/ajot.2016.017012 Ginsburg, K. R. (2007). The importance of play in promoting healthy child development and maintaining strong parent-child bonds. American Academy of Pediatrics, 119(1), 182191. doi: doi:10.1542/peds.2006-2697 Gokhale, P., Solanki, P. V., & Agarwal, P. (2014). To study the effectiveness of play based therapy on play behaviour of children with Downs syndrome. The Indian Journal of Occupational Therapy, 46(2), 41-48. Graham, N. E., Truman, J., & Holgate, H. (2015). Parents understanding of play for children with cerebral palsy. American Journal of Occupational Therapy, 69, 6903220050. http://dx.doi.org/10.5014/ajot.2015.015263 Graham, N., Truman, J., & Holgate, H. (2014). An exploratory study: Expanding the concept of play for children with severe cerebral palsy. British Journal of Occupational Therapy, 77(7), 358-365. doi:10.4276/030802214X14044755581781 He, H., Zhu, L., Chan, W. S., Liam, J. L. W., Ko, S. S., Li, H. C. W.,& Yobas, P. (2014). A mixed-method study of effects of a therapeutic play intervention for children on parental ANXIOUS CAREGIVERS AND THEIR CHILD 26 anxiety and parents perceptions of the intervention. Journal of Advanced Nursing, 71(7), 1539-1551. doi: 10.1111/jan.12623 Ma, Y. K, & Mak, W. S. (2016). 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American Journal of Occupational Therapy, 45(10), 882-888. Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2006). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development. 33(2), 180-187. doi:10.1111/j.1365-2214.2006.00644.x Nicol-Harper, R., Harvey, A. G., & Stein, A. (2007). Interactions between mothers and infants: Impact of maternal anxiety. Infant Behavior & Development, 30, 161-167. doi: 10.1016/j.infbeh.2006.08.005 ANXIOUS CAREGIVERS AND THEIR CHILD 27 Parham, L. D., & Fazio, L. S. (Eds.). (1997). Play in occupational therapy for children. St. Louis, MO: Mosby. Pedron-Giner, C., Calderon, C., Martinez-Costa, C., Borraz Gracia, S., & Gomez Lopez, L. (2014). Factors predicting distress among caregivers of children with neurological disease and home enteral nutrition. Child: Care, Health & Development, 40(3), 389-397. doi:10.1111/cch.12038 Sanders, J. L., & Morgan, S. B. (1997). Family stress and adjustment as perceived by parents of children with autism or Down syndrome: Implications for intervention. Child & Family Behavior Therapy, 19(4), 15-32. doi: 10.1300/J019v19n04_02 Spitzer, R. L., Kroenke, K., Williams, J. B. W., & Lwe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of Internal Medicine, 166(10), 10921097. https://doi.org/10.1001/archinte.166.10.1092 Stainton, T., & Besser, H. (1998). The positive impact of children with an intellectual disability on the family. Journal Of Intellectual & Developmental Disability, 23(1), 57-70. Venuti, P., de Falco, S., Giusti, Z., and Bornstein, M. H. (2008). Play and emotional availability in young children with Down syndrome. Infant Mental Health Journal, 29(2), 133152. doi: 10.1002/imhj.20168 Whaley, S. E., Pinto, A., & Sigman, M. (1999). Characterizing interactions between anxious mothers and their children. 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... Integrating Occupational Therapy-Based Interventions into a Kindergarten Curriculum: Improving Foundational Skills for At-Risk Students Laura Katherine Mull 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: Alison Nichols, OTR, OTD A Capstone Project Entitled Integrating Occupational Therapy-Based Interventions into a Kindergarten Curriculum: Improving Foundational Skills for At-Risk Students 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 Laura K Mull 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 Running head: OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 1 Abstract Background: State standards have shifted the focus of kindergarten curricula, increasing the amount of testing completed in schools, directly impacting the amount of time students spend in hands-on and exploratory play. With fewer opportunities to improve foundational skills required for handwriting and other school-based occupations, children who require more practice with these skills are falling behind peers. Purpose: The purpose was to integrate occupational therapy (OT)-based activities into a kindergarten curriculum to provide OT-based services to at-risk children for improved occupational performance and participation in the classroom. Design: Two kindergarten classrooms completed the Beery VMI pre- and post-program to track progress following the 7-week OT-based program. OT-based activities were implemented during reading block centers. Activities were chosen based on performance skills and client factors essential for successful handwriting and completion of daily activities within the classroom. Findings: Average raw and standard scores from the Beery VMI showed an overall increase in performance skills. Average raw scores in classroom A increased from 12.10 to 13.55 following the program, while average raw scores in classroom B increased from 11.20 to 13.43. Average standard scores in classroom A increased from 76 to 82 following the program, while average standard scores in classroom B increased from 72.67 to 82.48. Conclusion: Integrating OT-based activities into a kindergarten curriculum positively impacted students functional performance skills. Visual-motor and visual-perceptual skills significantly increased with daily exposure to activities that incorporated OT principles. Students demonstrated less difficulty crossing midline and showed an increase in bilateral coordination. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 2 Integrating Occupational Therapy-Based Interventions into a Kindergarten Curriculum: Improving Foundational Skills for At-Risk Students The U.S. Department of Education (2015) found that 59% of children across the nation are not academically prepared when they enter kindergarten. Children who are unprepared for kindergarten lack pre-academic skills, which negatively impacts their overall occupational performance and participation in the classroom (Elenko & Siegfried, 2018; Gerde, Foster, & Skibbe, 2014; Mabbett, 2018). Pre-academic and fundamental fine motor skills are imperative for students in kindergarten, as a large percentage of activities in school require efficient fine motor abilities (Marr, Cermak, Cohn, & Henderson, 2003; Trummert, 2016). In a school-based setting, occupational therapists are a vital member of a students educational team. Occupational therapists have the skills and training to appropriately address developmental delays for improved performance in early education settings. Occupational therapists have training in activity analysis, which involves breaking an activity down and determining the skills required to successfully complete the task. They can analyze how an individuals deficits may impact performance and then determine different modifications, adaptations, and interventions that would promote maximal occupational performance and participation. In a school-based setting, occupational therapists can consult with teachers and other staff members in regards to a students performance within the classroom. Modifications, interventions, and other adaptations can be implemented that aim to increase fine motor skills that would enhance occupational performance. With the use of an occupation-based (OBM) model and an occupational therapy (OT) mindset, interventions can be developed and implemented within the kindergarten curriculum to help improve foundational skills required for successful completion of academic activities. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 3 The guiding OBM utilized throughout this Doctoral Capstone Experience (DCE) will be the Person-Environment-Occupation-Performance (PEOP) model. The PEOP model focuses on the person, their environment, and occupations, with an overall emphasis on occupational performance (Christiansen, Baum, & Bass, 2011). The person includes intrinsic factors, such as physiological, psychological, cognitive, neurobehavioral, or spiritual factors (Christiansen et al., 2011). Within the school setting, the person may include age, gender, motivation, cognition, emotions, interests, and functional status. The environment would be the school building, including the classroom, gymnasium, cafeteria, library, and any other location the childs dysfunction may impact occupational performance at school. A childs occupations when in school are education, play, social participation, dressing, toileting, and feeding/eating. Performance refers to the abilities of the individual to complete various occupations (Christiansen, Baum, & Bass, 2011). In relation to this DCE, performance would be related to client factors and performance skills, and how dysfunction in these areas can impact overall occupational performance and participation within the classroom. Appendix A includes a visual graphic that demonstrates how all components of the PEOP model intertwine and relate to the occupational performance of an individual. The PEOP involves a much higher emphasis on assessing the person, rather than the environment. According to the PEOP, the most significant goal during the evaluation process is to analyze the client to determine strengths and any problems that may be impacting occupational performance (Christiansen et al., 2011). Two kindergarten classrooms will be observed to determine occupational performance deficits among the children, which will provide more insight to how these deficits impact occupational performance and participation in the classroom. Using the PEOP model provides a basis for observations and helps in selecting an OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 4 appropriate assessment and/or screening tool. Because the PEOP focuses more on assessing the person, rather than the environment (Christiansen et al., 2011), assessment and screening tools will be easier to choose from, as one can determine which performance skills and client factors they assess and narrow the selection based on that criteria. Interventions that correspond to the PEOP model include ones that facilitate and enhance occupational performance (Christiansen et al., 2011), such as fine motor activities, pencil grips, certain sensory integration techniques, and literacy components. By addressing dysfunction and providing strategies to improve occupational performance via OT-based interventions, students will have increased performance and participation in the classroom. Kindergarten Readiness Gap in Skills. While kindergarten classroom activities appear to be simple at surface level, children may lack exposure to or have limited experience with developmental opportunities that would facilitate growth and improvement of fine motor and cognitive development (Mabbett, 2018). Many activities performed within a kindergarten classroom require simultaneous use of fine motor and cognitive skills (Cameron et al., 2012). Some students enter kindergarten well-prepared, while others do not (Mabbett, 2018). Even when students have age-appropriate cognition, they could still struggle with fine motor tasks resulting in them falling behind peers in class (Elenko & Siegfried, 2018). These students could require more practice and hands-on experience for the development of foundational skills needed to be successful in kindergarten (Mabbett, 2018). With fewer opportunities throughout the school day to improve foundational skills required for handwriting and other school-based occupations, children who require more practice with these skills are falling behind peers because their delays OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 5 are not addressed appropriately (Bassok, Latham, & Rorem, 2015; Elenko & Siegfried, 2018; Gerde et al., 2014; Mabbett, 2018). A lack of exposure to specific activities or pre-academic skills can greatly impact kindergarten readiness and academic performance in school, leading to a gap in skills among students in the classroom (Isaacs, 2012). One of the most significant factors that contributes to this gap in skills is socioeconomic status, in that some children have the luxury of attending preschool and are exposed to various activities at home that prepare them for kindergarten, while other children do not experience either (Grissmer, Grimm, Aiyer, Murrah, & Steele, 2010; Mabbett, 2018). Low socioeconomic families are less likely to send their children to preschool, resulting in lower percentages of school readiness (Isaacs, 2012). Families with lower incomes are also less likely to work on crucial pre-academic skills at home, which can be attributed to less educated parents and an increase in single/teen parent households (Isaacs, 2012; Mabbett, 2018). Higher percentages of children are entering kindergarten with little to no pre-academic skills, leading to more children falling behind academically in relation to their academically prepared peers (Elenko & Siegfried, 2018; Gerde et al., 2014; Mabbett, 2018). Fine Motor Activities in the Classroom. Children entering kindergarten have much higher expectations on what pre-academic skills they should have mastered prior to entering kindergarten (Bassok et al.,2015; Mabbett, 2018; Marr et al., 2003). One specific demand for children is that they possess efficient fine motor skills enabling them to complete classroom assignments (Trummert, 2016). Marr, Cermak, Cohn, and Anderson (2003) found that an average of 46% of activities performed in the kindergarten classroom involve fine motor skills. These activities may include using scissors, folding and ripping paper, manipulating chips, completing puzzles, using counting blocks, manipulating zippers/buttons on their clothing, and OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 6 utilizing writing utensils. Nearly half of these fine motor tasks performed in the classroom involve pencil and paper activities (Marr et al., 2003), suggesting that handwriting is one of the most common fine motor related task students have to participate in. With a large percentage of activities in the classroom being fine motor-based, children who do not have those foundational skills may find it more difficult to complete academic activities at the same rate as their peers (Cameron et al., 2012; Gerde et al., 2014; Mabbett, 2018; Marr et al., 2003). Activities performed in the classroom not only involve fine motor abilities, but cognitive abilities as well (Cameron et al., 2012), specifically referring to the task of handwriting. Handwriting is an essential component to kindergarten, as students learn to write their name, capital and lowercase letters, and numbers. When looked at holistically, handwriting, in itself, is a multisensory skill (Case-Smith, Weaver, & Holland, 2014). A child requires bilateral coordination to manipulate the pencil with the dominant hand and to stabilize the paper with a helper hand; visual-motor and visual perceptual skills are required to copy information onto paper; proprioceptive input is required for appropriate pressure grade when writing on paper and gripping the pencil; cognition is used for attention, problem solving, and planning; and efficient fine motor skills are required to manipulate the pencil and produce legible handwriting (Gerde et al., 2014). To manipulate writing utensils, write letters and numbers, and copy shapes, students should have the fundamental fine motor, visual-motor, and perceptual skills to do so successfully (Mabbett, 2018). Educational Reform Changing Standards. State standards have unfortunately shifted the focus of the kindergarten curriculum, causing it to be comparable to the skills and information once learned in the first grade (Bassok et al., 2015). In Indiana, state standards require teachers to complete OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 7 two different standardized assessments with students, and districts have the option to choose which assessment they will utilize (C. Manowitz, personal communication, January 14, 2019). The school corporation within this study opted to use Exact Path as their main standardized assessment, and they use the Benchmark Assessment System (BAS) as their other standardized assessment (C. Manowitz, personal communication, January 14, 2019). Exact Path is administered via iPads, and the BAS involves assessing a childs reading level and comprehension (C. Manowitz, personal communication, January 14, 2019). The two observed kindergarten teachers also utilized a quarterly assessment that addressed letter recognition, sound recognition, sight words, ability to write upper and lowercase letters in random order, number recognition, counting by ones, counting by tens, writing numbers, and describing shapes (C. Manowitz, personal communication, January 14, 2019). With such an emphasis on standardized testing and the strict guidelines of state standards, it is not surprising handwriting has not been properly addressed within the elementary educational system for several years (Poole, 2017). This has ultimately resulted in a trend of poor student performance within the classroom (Poole, 2017). Decreased Play Opportunities. This new curriculum focus has pushed several teachers into decreasing the amount of time students spend in exploratory and hands-on play within their classroom (Bassok et al., 2015). With less emphasis on using hands during free-play, students lack exposure to activities that promote the development of foundational skills required for handwriting and literacy (Bassok et al., 2015; Elenko & Siegfried, 2018; Gerde et al., 2014; Mabbett, 2018). Lynch (2015) investigated American kindergarten teachers perspectives of play in kindergarten and found that some teachers believed play should not be a part of the classroom dynamic, as activities needed to be academic-focused to meet academic standards. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 8 There were also some teachers in the study who supported play within kindergarten classrooms, but validated play in the classroom only because it differed from play at home (Lynch, 2015). Curwood (2007) found that skill-and-drill exercises are the new norm in kindergarten classrooms, resulting in less imaginative playtime throughout a school day. Time spent in imaginative free-play allows students the opportunity to develop fundamental skills needed to understand numbers and words, which later relates to strengthened mathematic and literacy skills (Bassok et al., 2015; Curwood, 2007). Technology in the Classrooms. Students coming from low-income families may not share the luxury of playing with tablets or other electronic devices at home, increasing the gap in functional skills (Isaacs, 2012), as more schools are incorporating tablets and laptops into their classrooms. These children may not understand how to operate the device and may have difficulties when participating in academic applications independently. On the other hand, students who were exposed to tablet and iPad use prior to kindergarten may be at a greater disadvantage compared to those who were not because they may have had less exposure to hands-on and imaginative play (Lin, Cherng, & Chen, 2017). Lin, Cherng, and Chen (2017) investigated the impact of tablet use on fine motor skills of preschoolers without developmental delays. Preschoolers who did not participate in tablet use during activities made significant improvement in fine motor precision, fine motor integration, manual dexterity, and pinch strength (Lin et al., 2017). This suggests that children who have more exposure to tablet use prior to kindergarten may have limited abilities in other daily tasks due to limited fine motor development from extensive use of electronics. For example, students may not be able to turn pages in a book because they were swiping to flip pages on a tablet, as opposed to physically turning the page of a book (H. Barber, personal communication, January 11, 2019). OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 9 Integrated OT Services Unserved Children. Occupational therapy-based interventions integrated into the kindergarten curriculum can improve the occupational performance and participation of all students in the classroom (Ohl, Graze, Weber, Kenny, Salvatore, & Wagreich, 2013; Zylstra & Pfeiffer, 2016;). Students with a previously established Individualized Education Program (IEP) or a Section 504 plan are eligible for OT services within the school setting. Poole (2017) found that 3.2% of students in kindergarten and first grade at three elementary schools were eligible for OT services. This low number of students who were eligible for services may indicate that some students are overlooked or do not have a qualifying diagnosis that allows them to receive OT services in the school setting (Poole, 2017). Clark (2001) discussed how students needs are often unnoticed or overlooked within the classroom. While Clark (2001) directly discussed mental health needs being overlooked among students in elementary school, fine motor needs could also be overlooked as teachers are being pushed to include more academics into their classroom. With teachers being required to maintain strict state standards, they are focused on ensuring all students are meeting and maintaining academic standards (Poole, 2017), which could lead teachers to overlook fine motor difficulties by prioritizing academics. Bazyk et al. (2009) found that at-risk children who do not have an identifiable disability that would qualify them for services may benefit from an integrated OT approach within the classroom. When these students developmental delays are not addressed appropriately, they continue to fall further behind their peers and risk potentially repeating their kindergarten year (Gerde et al., 2014; Mabbett, 2018). When OT-based interventions are integrated into the general kindergarten classroom, it benefits all students (Bazyk et al., 2009; Case-Smith et al., 2014). OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 10 Preventative Services. Students with little to no exposure to developmental activities prior to kindergarten may flourish once given the opportunity to engage in these developmental opportunities at school (Mabbett, 2018). As mentioned previously, efficient fine motor skills are a demand of children entering kindergarten for successful participation (Trummert, 2016). When teachers identify students with fine motor deficits in kindergarten, they would typically consult with the occupational therapist within the school corporation and request an evaluation for services; however, if the student does not have an established IEP or 504, they cannot receive OT services in school until one is completed. Establishing an IEP in kindergarten can be a lengthy process, which still leaves the child at a disadvantage, as they often cannot be evaluated until later in the second semester of school (H. Barber, personal communications, January 11, 2019). Students who do not have an identified IEP or 504 may struggle with fine motor abilities, causing them to fall behind their peers academically (Gerde et al., 2014; Mabbett, 2018); however, these students may quickly pick up on those foundational skills if given more opportunities in school. Occupational therapy interventions as a preventative service in the kindergarten classroom would help those students who were not meeting state education standards, but who also do not meet requirements that would make them eligible for OT services in the school system (Trummet, 2016). Taras, Brennan, Gilbert, & Reed (2011) concluded that OT as a preventative service in kindergarten could potentially decrease the number of referrals made by teachers, especially those referrals that may be inappropriate. Impact on Performance and Participation in the Classroom. Integrating OT-based interventions into a kindergarten curriculum can improve fundamental skills, resulting in better performance in writing, early literacy development, and other areas of academia (Case-Smith et al., 2014; Gerde et al., 2014; Mabbet, 2018; Ohl et al., 2013; Trummert, 2016; Zylstra & Pfeiffer, OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 11 2016). When students possess foundational skills required for handwriting, they tend to be more engaged and miss fewer instructions in the classroom because they are not cognitively focused on the process of handwriting itself (Case-Smith et al., 2014). Zylstra and Pfeiffer (2016) and Gerde et al. (2014) found that OT-based interventions in the classroom were more likely to effectively promote developmentally appropriate handwriting as opposed to typical educational classrooms. Mabbett (2018) specifically studied the effects of integrated OT-based interventions on students fine motor and visual motor abilities. When integrated into the kindergarten curriculum, OT-based interventions were found to help improve those foundational skills required for successful completion of classroom activities (Mabbett, 2018). In 2016, Trummert explored the idea of incorporating fine motor specific centers in the classroom during group work. This study closely parallels the purpose of the proposed program for this DCE, and it strongly supports the inclusion of these OT-based services in the kindergarten classroom for increased performance and participation among students. To integrate these OT-based services effectively in the classroom, one must understand and be able to identify what areas of dysfunction the students are experiencing. Using the PEOP model as a guiding framework, appropriate observations and assessment tool selection can be made in order to identify deficits that are impacting overall occupational performance and participation in the classroom. These identified deficits can then be analyzed to determine what interventions and strategies would be most beneficial for increased performance for all students. The purpose of the program is to integrate OT-based services into a kindergarten curriculum in order to provide OT-based services to at-risk children who do not qualify for OT services in the school setting to improve occupational performance and participation in the classroom. Screening and Evaluation OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 12 Occupational Performance and Participation This project focused on increasing overall occupational performance and participation for all students within a general kindergarten classroom; however, the main purpose was to target atrisk children with developmental delays who do not qualify for OT services, which are intended to increase fundamental pre-academic skills. These children may fall academically behind because they have not mastered foundational skills required for typical advancements made once they have entered kindergarten (Elenko & Siegfried, 2018; Gerde et al., 2014; Mabbett, 2018). It is important to assess these skills in the natural environment a child performs them in (Clark, 2001), as it gives better insight on how the person, environment, and occupation impact overall occupational performance and participation. Because the PEOP focuses more on assessing the person, rather than the environment (Christiansen et al., 2011), assessment tool selection was narrowed down based on observations of performance skill and client factor deficits in the classroom, as well as general statements from the teachers and assistants. With handwriting being one of the most common activities performed within the kindergarten classroom (Marr et al., 2003), client factors and performance skills that impact handwriting were analyzed when choosing an appropriate assessment tool as well. Instrumentation The Beery-VMI. The Beery-Buktenica Developmental Test of Visual-Motor Integration (Beery VMI) was chosen based on client factor and performance skill deficits observed in the classroom, as well as from statements given from both kindergarten teachers. This standardized, norm-referenced assessment is one of the most commonly used tools among occupational therapists (Feder et al., 2000). A 2000 study revealed nearly 81% of occupational therapists in eight Canadian provinces utilized the Beery VMI when assessing students handwriting deficits OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 13 (Feder et al., 2000). The Beery VMI evaluates an individuals ability to integrate their visual and motor skills, and it is available in full form or short form (Beery & Beery, 2004). The short form was chosen for this DCE project, as it is used specifically for children 2 through 7 years of age (Beery & Beery, 2004). The short form of the Beery VMI consists of 21 geometric shapes in a developmental sequence to evaluate a childs visual motor and visual perceptual skills (Beery & Beery, 2004) needed for daily occupations performed in the classroom and throughout the school day. The Beery VMI has been proven to be a valid outcome measure for fine motor and handwriting interventions (Salls, Benson, Hansen, Cole, Pielielek, 2013). In a 2013 study, the Beery VMI was used as an outcome measure to track progress following implementation of two different handwriting programs in two different first grade classrooms (Salls et al., 2013). While initial raw scores and final raw scores were not significantly different, the Beery VMI was successful in showing progress made following both handwriting programs (Salls et al., 2013). Clinical Observations. The PEOP does not have an associated assessment tool, so in combination with the Beery VMI, clinical observations were also completed to fully understand the impact of dysfunction on occupational performance and participation (Kramer, 2018). Collective observations of both classrooms were made during writing activities, which allowed for further insight on the students performance on the function/dysfunction continuum (Kramer, 2018). When referring to visual-motor, visual-perceptual, and overall fine motor abilities, clinical observations were made to determine deficits in these areas in combination with the Beery VMI. Clinical observations are useful when screening and evaluating a child, as it provides insight to possible problems with academic performance (Kramer, 2018). Each classroom was observed for one full school day, which included a 90-minute reading block, 2 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 14 recesses, physical education, a 30-minute math block, lunch, and other various activities performed throughout the day. Needs Assessment To determine appropriate interventions that would be integrated into the kindergarten curriculum, a needs assessment was completed. The needs assessment consisted of an informal interview with both kindergarten teachers and occupational therapist, a discussion with the kindergarten assistant(s), observations made in each classroom, the Beery-VMI, and clinical observations when administering the assessment tool. These specific strategies provided insight on which students were struggling, areas the students were struggling in, and strategies the teachers have previously tried with specified students. Classroom observations provided detailed classroom routines and a quick view of the students function/dysfunction by closely observing handwriting during group work. Informal Interviews. Following interviews with both kindergarten teachers, it was evident that fine motor difficulties were the most common among both classrooms. Specific students were identified to have more fine motor difficulties compared to the majority of the classroom. Both kindergarten teachers stated that students had made a lot of progress compared to the beginning of the year, as there were a few students who had no idea how to hold a pencil. Even at the beginning of the year when some students were struggling with pencil grasp, no students in either kindergarten classroom received OT services. It was also found that correct progression of pencil grasp and other identifiers of hand weakness were not taught in either of the teachers schooling. The teacher in classroom A has been teaching kindergarten for fifteen years, while the teacher in classroom B has only been teaching kindergarten for three years. Both teachers reported they were not fully aware of the versatility of occupational therapy and OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 15 did not realize all that went into handwriting, but the seasoned teacher had more experience and interactions with the occupational therapist, which has helped her when identifying students with difficulties. The teacher in classroom A has utilized different pencil grips for a few of her students, which were provided to her at the beginning of the school year through the school, not the occupational therapist. The teacher in classroom A used a Stetro grip for one student and an egg-shaped grip for another student. The teacher in classroom B did not utilize pencil grips for any of her students, but she was observed using hand-over-hand with one student to correct pencil grasp when completing a writing assignment in class. Both teachers and occupational therapist reported no OT referrals this school year, and also no current students receiving OT services under an IEP or 504. From previous experience and knowledge, the occupational therapist at the participating elementary school stated that all kindergartners would benefit from further interventions that address dexterity, bilateral coordination, visual-motor coordination, proprioception, and crossing-midline. Beery VMI Results. A total of forty-one students completed the Beery VMI, with 20 students in classroom A and 21 students in classroom B. Following administration of the Beery VMI, test booklets were scored to produce raw scores using the Beery VMI manual. Raw scores were then converted to standard scores, and standard scores were used to determine scaled scores and age equivalents for all students in the classroom. Visual graphics and averages were not computed or provided for scaled scores and age equivalents, as they showed similar trends in performance, which would have resulted in similar graphics. An average was determined for students age, raw scores, and standard scores. The average age for students in classroom A was 6.08 years, the average raw score was 12.10, and the average standard score was 76. The average age for students in classroom B was 6.0 years, the average raw score was 11.20, and the OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 16 average standard score was 72.67. The youngest students in classroom A and classroom B were both 5.5 years of age. The oldest student in classroom A was 7 years and 5 months, while the oldest in classroom B was 6 years and 7 months of age. When interpreting the Beery VMI, a higher standard score represents a higher level of visual-motor performance. Standard scores can go higher than a 129, which categorizes students level of visual-motor performance at very high (Beery & Beery, 2004). A lower standard score represents a lower level of visual-motor performance. Standard scores that go below 70 categorize students level of visual-motor performance at very low (Beery & Beery, 2004). Percentages of students that fell within each performance range are provided in Figure 1. Students in classroom A produced slightly higher standard scores compared to students in classroom B. Results of the Beery VMI indicate that a very high percentage of students in the participating kindergarten classrooms have not fully integrated their visual and motor abilities. Average Performance: Initial 50 45 40 Percentage of Students 43 40 43 35 35 30 25 20 20 15 10 5 9 5 5 0 Classroom A Average Classroom B Below Average Low Very Low Figure 1. Performance Range Based on Standard Scores for Kindergarten Students OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 17 Clinical Observation. Clinical observations were made in both classrooms as a whole and for each individual student when completing the Beery VMI. Similar client factors and performance skills were observed during whole classroom and individual observations. It was found that decreased fine motor strength was the most common among all students, which was evident by inefficient pencil grasps and difficulty opening containers/packages during lunch. Inefficient pencil grasps observed during administration of the Beery VMI included thumb wrap, thumb tuck, index wrap, and a 5-point grasp. One student was observed using an index wrap for pencil and crayon use. Another student would have an efficient grasp on a pencil, but would use an index wrap and 4-point grasp inconsistently. During the initial whole classroom observation, one student was observed using a palmar supinate grasp when coloring, which is typical up to 18 months of age (Case-Smith & OBrien, 2015). Two students were observed holding their pencil and crayon with a digital pronate grasp, which is typically observed with children between 18 to 30 months (Case-Smith & OBrien, 2015). When completing the Beery VMI, a high percentage of students demonstrated difficulty crossing midline, as they would lean or shift their body left if they were right handed and they would lean or shift their body right if they were left handed. Only a few students demonstrated decreased bilateral integration, as they were not utilizing their opposite hand to stabilize the paper when writing. Overall, specific areas of concern observed in both classrooms include crossing midline, visual-motor deficits, visual-perceptual deficits, and decreased fine motor strength. Compare and Contrast Within Different Practice Settings Handwriting is not only addressed by school-based occupational therapists, but within other OT practice areas as well. Occupational therapists can address handwriting in pediatric acute care (hospital setting), pediatric rehabilitation centers, and in private practices (Feder, OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 18 Majnemer, & Synnes, 2000). A study conducted in eight Canadian provinces found that 34% of pediatric occupational therapists practiced in a school-based setting, whereas 32% practiced in a hospital setting, 22% in a pediatric rehabilitation center, and only 12% in private practice (Feder et al., 2000). Among the pediatric occupational therapists surveyed, 90% of them assessed fine/gross motor skills, motor planning, perceptual skills, and overall quality of movement when a child was referred for handwriting and/or fine motor deficits (Feder et al., 2000). A small percentage of pediatric occupational therapists within all practice settings assessed functional performance or handwriting itself within evaluations (Feder et al., 2000). This finding suggests that pediatric occupational therapists across different practice areas are assessing client factors and performance skills related to efficient handwriting, rather than assessing handwriting itself. When addressing handwriting difficulties; however, therapists across pediatric practice settings appear to be using similar approaches to improve occupational performance and participation for children with handwriting and other fine motor difficulties (Feder et al., 2000). Within a school-based setting, motor learning and visual-perceptual-motor (also known as perceptual-motor) are two common approaches used for developing interventions that address handwriting and other fine motor difficulties (Feder et al., 2000). These different intervention approaches, however, are not confined to school-based therapists. A motor learning approach was utilized by 61.1% of school-based therapists. In comparison, 100% of pediatric occupational therapists in private practice, 72.7% of therapists in a pediatric rehabilitation center, and 62.5% of therapists in a hospital setting used a motor learning approach to develop appropriate interventions (Feder et al., 2000). A perceptual-motor approach was used by 66.7% of school-based therapists. Conversely, 80% of therapists in private practice, 72.7% of therapists in a pediatric rehabilitation center, and 81.3% of pediatric therapists in a hospital setting used a OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 19 perceptual-motor approach to guide handwriting and fine motor-based interventions (Feder et al., 2000). A multisensory approach is another common way pediatric occupational therapists guide interventions for handwriting and fine motor difficulties (Feder et al., 2000). Two approaches that can incorporate multisensory aspects are sensory integration and sensorimotor (Feder et al., 2000). In a school-based setting, sensory integration was used by only 50% of occupational therapists, while a sensorimotor approach was utilized by 77.8% of pediatric occupational therapists (Feder et al., 2000). Conversely, 80% of private practice occupational therapists utilized a sensory integration approach and 100% utilized a sensorimotor approach in practice (Feder et al., 2000). Within a pediatric rehabilitation center, 54.5% of therapists utilized a sensory integration approach, while 90.9% used a sensorimotor approach (Feder et al., 2000). In a hospital setting, 100% of pediatric occupational therapists utilized a sensorimotor approach. A sensory integration approach was utilized the least within a hospital setting, with only 37.5% of pediatric occupational therapists using to address fine motor and handwriting difficulties (Feder et al., 2000). While different approaches are used to address the deficits related to handwriting and fine motor skills, children are still being provided with effective treatment opportunities aimed at increasing overall occupational performance and participation. Implementation Centers in the Kindergarten Classroom For both classrooms, implementation of the OT-based interventions occurred during the kindergartens 90-minute scheduled reading block in the morning, with the exception to classroom B, where one group was seen during Multi-Tiered System of Support (MTSS) time. Within that 90-minute reading block, the students completed centers for 30 minutes. These OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 20 centers consisted of different teacher-chosen literacy activities that involved sight words, writing, reading to self, pocket chart, and working with the teacher. The teacher in classroom B had two extra centers that allowed students to play on their iPads on an application called Reading Eggs, which is an academic reading-based game, or complete literacy puzzles. Even though the specific activities at each center were pre-planned by the teacher, the students still had the opportunity to choose which center they wanted to start at and which center they rotated to after completion. Classroom A. In classroom A, the teacher had her class divided into different groups based on scores obtained from the BAS, which was completed with all kindergarten students following the second nine weeks of school. The groups consisted of Reading Behavior (RB), Level A, Level B, Level C, and Level D students. For weeks 1-3, students were classified into RB, Level A, Level B, and Level C groups. During weeks 1-3, the teacher worked with students in who were classified into RB and Level A every day for 15 minutes, while students in Level B and Level C rotated working with the teacher every other day. The students completed the BAS again during the third nine weeks of school and groups for centers changed, therefore, changing the rotation of students who participated in the OT-based center. For weeks 4-7, students were classified into RB, Level A, Level B, Level C, and Level D groups. During centers, the teacher worked with students in RB and Level A groups every day for 15 minutes, while Level B and Level C groups were seen twice a week by the teacher. Level D students were the only group to work with the teacher once a week. Figure 2 and Figure 3 illustrate how the different groups of students filtered through the OT-based center during the allotted reading block in classroom A. There were 21 students total who participated in classroom A. In Figure 2, the groups highlighted in red and orange were seen every day, so those specific groups included the same OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 21 students every day. The group highlighted in green and the group highlighted in blue were two separate groups of students that rotated every other day. In Figure 3, the groups highlighted in red and orange were seen every day, so those specific groups included the same students every day. The group highlighted in green, blue, and purple were three separate groups of students that rotated throughout the week. Monday Tuesday Wednesday Thursday Friday 8:30-8:45 Reading Behavior (6 students) Reading Behavior (6 students) Reading Behavior (6 students) Reading Behavior (6 students) Reading Behavior (6 students) 8:45-9:00 Level A (5 students) Level A (5 students) Level A (5 students) Level A (5 students) Level A (5 students) 9:00-9:15 Level B (5 students) Level C (5 students) Level B (5 students) Level C (5 students) Level B (5 students) Figure 2. Weeks 1-3 rotation with OT-based center in classroom A Monday Tuesday Wednesday Thursday Friday 8:30-8:45 Level A (5 students) Level A (5 students) Level A (5 students) Level A (5 students) Level A (5 students) 8:45-9:00 Reading Behavior (3 students) Reading Behavior (3 students) Reading Behavior (3 students) Reading Behavior (3 students) Reading Behavior (3 students) 9:00-9:15 Level B (5 kids) Level C (3 students) Level D (5 kids) Level B (5 kids) Level C (3 students) Figure 3. Weeks 4-7 rotation with OT-based center in classroom A OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 22 Classroom B. In classroom B, the teacher did not divide students into specific groups based on academic performance, unlike the teacher in classroom A. During centers, the teacher in classroom B pulled students with similar BAS scores to work with her for 15 minutes and then switched groups. Regarding implementation of the OT-based interventions with the OT student, the interventions were still completed primarily during the center time; however, per teacher request, one larger group of students completed the OT-based intervention during MTSS time. In order for all students to complete the same activity, different groups of students completed the same activity within a two-day timeframe. Figure 4 illustrates how the different groups of students filtered through the OT-based center during the allotted reading block for classroom B. There were 21 students total who participated from classroom B. Monday and Tuesday are highlighted gray, which indicates the same activity was performed for the entire class in a twoday time frame. Groups are written in different colors (red, orange, green, purple, blue and pink), indicating that groups remained the same Monday through Thursday. On Friday, the teacher would select which students would participate in the OT-based center, so the groups were left in black; however, the groups are written in different font styles in order to indicate different groups of students being chosen each day. Monday Tuesday Wednesday Thursday Friday 9:30-9:45 3 students 3 students 3 students 3 students 3 students 9:45-10:00 3 students 3 students 3 students 3 students 3 students 10:45-11:00 4 students 5 students 4 students 5 students 5 students Figure 4. Weekly rotations with OT-based center in classroom B OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 23 Activities Completed with Students. Each classroom had a different schedule for reading centers, so activities were completed differently within each classroom. Activities were picked based on performance skills and client factors that were essential for successful handwriting and completion of daily activities within the classroom. After completion of the needs assessment, it was determined that activities would incorporate visual-motor, visualperceptual, fine motor strengthening, shoulder strengthening, bilateral coordination, and in-hand manipulation skills. Table 1 and Table 2 provide an example of how the different activities were completed throughout the week within each classroom. All performance skills were addressed within classroom B; however, they were not addressed weekly as compared to classroom A. They were divided up among the 7-week program since it took two complete days to see all 21 students in classroom B. For a complete schedule of all activities performed within each classroom, refer to Appendix B and Appendix C. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 24 Table 1 Rotation of Activities Completed Throughout the Week in Classroom A Week/Day in Program Week 2 Activity Focus Activity Materials Needed Day 6 Bilateral Coordination I Love You to Pieces Scissors, construction paper, glue sticks, hole punch (incorporate fine motor strengthening), 42 copies of page number 6 Day 7 Shoulder Strengthening Prone Play: Valentines Day Roll and Cover with Numbers Paper Dice in plastic jar, 6 copies of page number 7 Day 8 Visual-motor & visual perceptual Valentines Day Maze & Hidden Pictures Dry-erase markers, 3 laminated copies of page number 8, 6 laminated copies of page number 9, 6 laminated copies of page number 10 Day 9 In-hand manipulation Do-a-Dot Heart Page with Matching Letters Red/Yellow foam circles, 6 laminated copies of page number 11 Day 10 Fine motor strengthening Sight Word BINGO BINGO cards, tongs, beads, original copy on page number 12 Note: Example was provided from week two of program, as changes were made throughout week one to the organization of the rotation schedule. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 25 Table 2 Rotation of Activities Completed Throughout the Week in Classroom B Week/Day in Program Day 6 & Day 7 Week 2 Day 8 & Day 9 Day 10 Activity Focus Activity Materials Needed Scissors, construction paper, glue sticks, hole punch (incorporate fine motor strengthening), 42 copies of page number 6 Bilateral Coordination I Love You to Pieces In-hand manipulation Do-A-Dot Heart page with letters Paper Dice in plastic jar, 6 copies of page number 7 Shoulder Strengthening Prone Play: Valentines Day Roll and Cover with Numbers Red/Yellow foam circles, 6 laminated copies of page number 11 Note. Example was provided from week two of program, as changes were made throughout week one to the organization of the rotation schedule. Leadership in the Implementation Phase Leadership was exemplified through independence within the school environment, easily building rapport with students in both classrooms, and connecting with the kindergarten teachers and other faculty members. By reaching out to other OT practitioners in regard to this DCE project, leadership was shown by initiative and passion for the field of occupational therapy. The resources provided via these other practitioners aided in the development of an effective and reliable resource binder for the teachers in kindergarten. Effective communication between the site mentor, both kindergarten teachers, and other relevant individuals was imperative for successful completion of the OT-based interventions during centers. Another way leadership OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 26 was shown throughout the implementation phase was giving advice and suggestions on how to modify current centers to incorporate OT principles. Teachers were provided with an online resource that focused on incorporating fine-motor activities into a kindergarten curriculum, created specifically by a kindergarten teacher. The website also offered various resources for teachers to use, such as curriculum guides and specific activities to use in the classroom. Some of the activities used within the program were freebies from this online resource and they were also provided in the resource binder intended for the teachers following completion of the program. When creating the resource binder, including the teachers when compiling resources was an act of leadership, as it implied that their opinions were valuable and that they had an important role in regards to this DCE projects overall quality improvement. Leadership was demonstrated every day within the classroom, whether it was just the teacher in the room, or with all the students present. It was important to lead by example during the implementation phase, as students in kindergarten are susceptible to copying behaviors of others, which was frequently observed throughout the implementation phase of this DCE project. Staff Development in the Implementation Phase During the implementation phase of this DCE project, staff development was promoted by educating kindergarten teachers on the benefits of the OT-based centers, which focused on fine motor strengthening, shoulder strengthening, in-hand manipulation, visual-motor, visual perceptual, and bilateral coordination. By doing so, the teachers were better able to understand the means behind each activity and realize how important these skills are for the establishment and improvement of fundamental skills and meeting developmentally appropriate milestones. Staff development was also promoted when compiling information for the resource binder. Each kindergarten teacher was asked if they had certain areas of interest to include in the binder that OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 27 would be specifically beneficial for meeting their students needs. The resource binder would serve as a reference and guide for the kindergarten teachers following completion of this DCE project, as it included background information on fundamental skills, developmental sequences, quick checklists for age-appropriate skills, remediation strategies for the classroom, and activities to promote performance skills required for successful completion of school-based activities. The kindergarten teachers were also informed on ways to incorporate OT principles by modifying their current activities used during centers. A formal presentation was given to several individuals, including those amongst the school administration. Individuals included the Director of Special Programs, one of the two Assistant Directors of Special Programs, the special education teacher at Hayden Elementary, the principal at Hayden Elementary, the two kindergarten teachers involved in the project, and the physical therapist and two occupational therapists within the school corporation. A member of the Jennings County School Board was also interested in attending, but unfortunately, she was not able to attend. The data presentation aimed to promote staff development by educating all individuals on the importance of hands-on exposure within the classroom to foster the development and improvement of fundamental and age-appropriate skills. Based on the progress made during the OT-based centers, one could see how daily exposure to OT-based activities in the kindergarten classroom improved fundamental skills required for successful completion of daily school-based activities. All individuals present at the presentation were very pleased with the outcomes of the program. The Director of Special Programs seemed to think this program could be something easily implemented into other classrooms, as she stated it was mostly a matter of teaching the information to the teachers and having them implement the activities into their centers. She brought up the topic of having a list of appropriate materials that would be OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 28 needed in order for this to be institutionalized into other schools. The binder that was created in addition to the 7-week program listed all activities completed, the focus of the activity, and the materials used for each activity, so distributing that information to other schools would be beneficial when institutionalizing the concept of this program. Discontinuation and Outcome Project Outcomes Final Raw and Standard Scores. Students in both kindergarten classrooms completed the Beery VMI to obtain final scores following completion of the 7-week program. Initially 21 students in classroom A completed the Beery VMI; however, one student was not present during post-test administration, so all collected data was omitted for this student. All 21 students in classroom B were present during final administration of the Beery VMI. Final scores were compared to initial scores to assess student progress made during the 7-week program. The final average raw score in classroom A was 13.55, which was an increase compared to the initial average raw score of 12.10. The final average standard score in classroom A was 82, which was an increase compared to the initial average standard score of 76. Five students in classroom A scored the same on the final assessment as they did on the initial assessment, which resulted in slightly lower standard scores since their chronological age differed from the initial assessment. The students chronological age directly impacted standard scores, as it and raw scores were used to compute standard scores for each student. In classroom B, the final average raw score was 13.43, which was an increase compared to the initial average raw score of 11.20. The final average standard score in classroom B was 82.48, which was an increase compared to the initial standard score of 72.67. Four students in classroom B scored the same on the final assessment as OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 29 they did on the initial assessment, which resulted in slightly lower standard scores since their chronological age differed from the initial assessment. Final Performance Levels. Once standard scores were computed, average performance levels were determined for each student following the completion of the 7-week program. Figure 5 and Figure 6 illustrate the comparisons of initial average performance levels to final average performance levels in the kindergarten classrooms. Students standard scores were used to determine performance levels, then each category was totaled and calculated into percentages. Final scores in classroom A showed an increase in the percentage of students classified as average, while below average remained the same. The number of students in classroom A classified as low and very low decreased, meaning that students visual-motor and visual perceptual skills improved. Final scores in classroom B showed an increase in the number students classified as average and below average. The number of students classified as low and very low significantly decreased, meaning students in classroom B greatly improved their overall visual-motor and visual-perceptual skills. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 30 Average Performance in Classroom A 45 40 Percentage of Students 40 40 35 35 30 25 25 25 20 20 15 10 10 5 5 0 Initial Final Average Below average Low Very low Figure 5. Percentages of students within each performance range based on standard scores for Classroom A. Figure 6. Percentages of students within each performance range based on standard scores Average Performance in Classroom B 50 43 45 43 Percentage of Student 40 33 35 33 30 24 25 20 15 10 5 10 9 5 0 Initial Average for Classroom B. Final Below average Low Very low OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 31 Interpretation of Data. Based on the final data obtained following the 7-week program, it was evident that integrating OT-based activities into the kindergarten curriculum positively impacted students functional performance skills. Visual-motor and visual-perceptual skills significantly increased with daily exposure to activities that incorporated OT principles. While the rotation of the OT-based center varied between classrooms, students still demonstrated an average increase in scores based on the Beery VMI. Clinical observations were also made during the final administration of the Beery VMI. Students demonstrated less difficulty crossing midline, as fewer students were observed rotating or shifting their bodies when copying the shapes in the test booklet. Fewer students showed difficulties with bilateral coordination, evident by using their helper hand to stabilize the paper when copying shapes in the test booklet with fewer verbal cues. Quality Improvement Several quality improvement efforts were made to enhance performance in the kindergarten classroom to guarantee maximum performance by students. To ensure students were performing activities that would benefit their overall fine motor skills, extensive research was completed to determine appropriate activities targeting specific performance skills and client factors needed to be successful in a school environment. Once an extensive list of activities was established, all activities and rationales were reviewed by an experienced school-based occupational therapist. Activities were completed with both kindergarten classrooms for three consecutive weeks prior to the first quality improvement analysis. Activities were improved and changed based on responses from students, amount of effort made by students during centers, and attention given from students when completing the activity at hand. Each activity was modified for students level of academic performance. Students reading at Level RB completed OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 32 the same activity as students in Level D; however, different instructions and goals were achieved based on academic performance. The activities completed with poor effort or ones that had negative reviews were replaced by more exciting and motivating activities to increase performance and participation during centers. Based on teacher preference, activities were modified to include literacy components, so students were receiving both academic and OTbased interventions. Quality improvements were also made in regards to when the OT-based centers would take place in the kindergarten classroom. In classroom A, the OT-based center was treated as just another rotation for all kids to freely move to on the first day. After analyzing and discussing a better rotation with the teacher in classroom A, students would not get to choose if they came to the OT-based center that day. Rather, students rotated through the OT-based center in their groups determined by BAS scores. The following six weeks in classroom A operated much smoother following improvements made to the organization and rotation during centers. In classroom B, only five students were seen per day in the OT-based center, so it took the entire first week to complete one activity with the whole classroom. Following multiple discussions with the teacher in classroom B and several example rotations, a decision was made to increase the number of students seen during centers and to add a separate group during MTSS time, so all students could participate in the OT-based center in two days. Per teacher request, Fridays were used to see students with lower scores obtained from the Beery-VMI. Sustainability Sustainability was accounted for by providing teachers with a resource binder and a list of online websites that emphasized fine motor activities in the classrooms. Both resources were meant to be used as a reference guide by teachers following completion of this DCE project. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 33 One website in particular offered detailed information on how the curriculum was organized so that academic activities completed in the classroom also focused on fine motor skills. The creator of the website was a kindergarten teacher, so the content was relatable and easy to follow. These resources were to help ensure activities completed in the program would continue to be implemented in the kindergarten classroom following completion of this DCE project. While a list of activities and supplies was provided to the teachers, not all activities will be expected to be completed as some were not solely academic based. Some activities would be more appropriate to complete at the beginning of the year as opposed to the middle of the school year, or more appropriate to complete toward the end of the school year as opposed to the middle of the school year. Teachers were given ideas on how to modify and alter activities based on the students current skills. For example, one activity could focus on letter recognition at the beginning of the year, then it could be modified at the middle of the year to work on sight words, and then finally modified to work on simple sentences toward the end of the school year. It was important to adapt activities in the program to meet teacher preferences and expectations to ensure sustainability following completion of this DCE project. Societal Need State standards have shifted the focus of school curricula resulting in higher expectations for children who are entering kindergarten (Bassok et al., 2015; Mabbet, 2018, Marr et al., 2003). Children entering kindergarten are expected to have mastered certain skills and learned specific information prior to entering kindergarten; however, these skills now learned in kindergarten are comparable to skills that were once learned in the first grade (Bassok et al., 2015). Some of these skills and prior knowledge include writing their name, manipulating scissors and cutting independently, recognizing letters in the alphabet, knowing basic shapes and colors, and OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 34 counting. There is less emphasis on using hands during free-play due to the curriculum shift, resulting in an increased number of students who lack exposure to activities that promote the development of foundational skills required for handwriting and literacy (Bassok et al., 2015; Elenko & Siegfried, 2018; Gerde et al., 2014; Mabbett, 2018). For some students, exploratory play and hands-on activities at school are their only encounter with developmentally appropriate activities aimed to increase their functional skills (Mabbet, 2018). This lack of exposure to specific activities or pre-academic skills can greatly impact kindergarten readiness and academic performance in school (Isaacs, 2012). The societal need addressed during this DCE project was allowing students to experience more hands-on, OT-based activities in the classroom to improve performance and participation in daily school activities. By providing an OT-based center during the kindergarten allotted reading block, students were given the opportunity to improve or further enhance foundational skills required for success in the school environment. Mathematic and literacy activities completed in the kindergarten classroom could easily be modified to incorporate OT principles to target specific client factors and performance skills. Overall Learning Experience Communication Starting from day one of this DCE project, communication between different professions was key within the school environment. The occupational therapist communicated with speech therapy, physical therapy, social work, special education teachers, teachers of students with emotional disturbances, grade level teachers, the school psychologist, and various school administrators. I gained insight on how the processes of interdisciplinary communication takes place, such as IEP meetings, informal conversations with staff members, or collaborative meetings with several staff members. While completing this DCE project, interactions with OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 35 school staff, students, and administration occurred through written, oral, and nonverbal means of communication. Site Mentor. Effective communication was required for successful implementation into the kindergarten classrooms during this DCE project. When communicating with the site mentor, verbal and electronic communication were used when collaborating about the program. Verbal communication occurred on a daily basis up until week five, which was the beginning of the implementation phase. After week five, electronic communication was frequent and verbal communication occurred every Monday. These forms of communication ensured smooth implementation of the program, and to review appropriate activities the students were to complete during the program. All means of communication with the site mentor were professional, confidential, and appropriate throughout this DCE project. School Staff and Students. While at Hayden Elementary, daily communication occurred with all students and both kindergarten teachers. Frequent interactions occurred with the school principal, the special education teacher, and the classroom assistants. Verbal communication occurred when educating the students on the importance of strong hand muscles and when giving simplified instructions during more difficult activities. Nonverbal communication was an extremely important means of communication with the students, as well. When completing activities with students, it was important to refrain from any negative facial expressions, as they could have been interpreted differently by each student. These gestures could have created feelings of failure or made the student feel unimportant during centers. Verbal communication was the most common form of interaction to occur between the kindergarten teachers. During centers, one teacher would ask questions about the activity and what it focused on. By explaining the activity and providing a rationale to why the students were OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 36 completing it, the teachers developed a better understanding of the importance of working on different client factors and performance skills. When changes occurred with scheduling or when group rotation changed in classroom A, communication was vital when determining an alternative schedule for the OT-based center. Effective communication and remaining flexible with the school schedule had to happen in order for the OT-based center to be appropriately and smoothly implemented into the curriculum. Leadership and Advocacy Leadership was embodied throughout this DCE project by maintaining professionalism in the school building and positively representing the university and OT profession. When discussing program details with the facilitys speech therapist, it was brought up several times that as a practicing occupational therapist or any other profession in the school environment, advocating for the student is extremely important. Advocacy for the OT profession was ingrained within the program being piloted at the elementary school. With assessments and testing becoming more frequent in the school environment, students are experiencing less handson and exploratory play within the kindergarten classroom (Bassok et al., 2015). Integrating the OT-based center and collecting data to show how functional performance increased with exposure to developmentally appropriate activities helped validate the need for an integrated OTapproach in the kindergarten classroom. Data was presented to school administration to show progress made, which was advocating for the needs of kindergarten students. From advocating for the students via informal conversations, to advocating for students via formal presentation to school administration, it was learned throughout this DCE project that no matter how small an act of advocacy is, the profession of OT is always willing to go above and beyond for clients in need. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 37 References Bassok, D., Latham, S. & Rorem, A. (2015). Is kindergarten the new first grade? EdPolicyWorks Working Paper Series No. 20. Retrieved from: http://curry.virginia.edu/ uploads/resourceLibrary/20_Bassok_Is_Kindergarten_The_New_First_Grade.pdf Bazyk, S., Michaud, P., Goodman, G., Papp, P., Hawkins, E., & Welch, M. A. (2009). Integrating occupational therapy services in a kindergarten curriculum: A look at the outcomes. American Journal of Occupational Therapy, 63(2), 160-171. Beery, K. E. & Beery, N. A., (2004). The Beery-Buktenica Developmental Test of Visual-Motor Integration: Administration, scoring, and teaching manual (5th ed.). Minneapolis, MN: NCS Pearson, Inc 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. Case-Smith, J., Weaver, L., & Holland, T. (2014). Effects of a classroom-embedded occupational therapist-teacher handwriting program for first-grade students. American Journal of Occupational Therapy, 68, 690-698. doi: 10.5014/ajot.2014.011585 Christiansen, C., Baum, C. & Bass, J. (2011). The Person-Environment-Occupational Performance (PEOP) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (5th ed.) (pp. 93-104). Edinburgh, Scotland: Churchill Livingstone Elsevier. Clark, G. (2001). Children often overlooked for occupational therapy services in educational settings. School System Special Interest Section Quarterly, 8(3), 1-3. Curwood, J. S. (2007). What happened to kindergarten? Instructor, 117(1), 28. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 38 Elenko, B., & Siegfried, E. (2018). Promoting inclusion: Information and strategies in early childhood. OT Practice, 23(5), 811. doi: 10.7138/otp.2018 2305.f1 Feder, K., Majnemer, A., & Synnes, A. (2000). Handwriting: Current trends in occupational therapy practice. Canadian Journal of Occupational Therapy, 67(3), 197-204. Gerde, H. K., Foster, T. D., & Skibbe, L. E. (2014). Beyond the pencil: Expanding the occupational therapists role in helping young children to develop writing skills. The Open Journal of Occupational Therapy, 2(1), 5. Grissmer, D., Grimm, K.J., Aiyer, S.M., Murrah, W.M, & Steele, J.S. (2010). Fine motor skills and early comprehension of the world: Two new school readiness indicators. Developmental Psychology, 46(5), 1008-1017. Isaacs, J. (2012). Starting school at a disadvantage: The school readiness of poor children. The Social Genome Project. Center on Children and Families at Brookings, 1-22. Kramer, P. (2018). Frames of reference for pediatric occupational therapy. [Google book version]. Retrieved from https://books.google.com/books/about/Frames_of_Reference_for_ Pediatric_Occupa.html?id=8vx9DwAAQBAJ&printsec=frontcover&source=kp_read_but ton#v=onepage&q&f=false Lin, L. Y., Cherng, R. J., & Chen, Y. J. (2017). Effect of touch screen tablet use on fine motor development of young children. Physical & Occupational Therapy in Pediatrics, 37(5), 457-467. Lynch, M. (2015). More play, please: The perspective of kindergarten teachers on play in the classroom. American Journal of Play, 7(3), 347-370. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 39 Mabbett, K. (2018). Kinder tools: The effectiveness of a 12-week response to intervention approach to improve fine motor and visual motor perceptual skills in kindergarten students (Unpublished doctoral dissertation). Boston University, Massachusetts Marr, D., Cermak, S., Cohn, E.S., and Henderson, A. (2003). Fine motor activities in Head Start and kindergarten classrooms. American Journal of Occupational Therapy, 57, 550557. Ohl, A. M., Graze, H., Weber, K., Kenny, S., Salvatore, C., & Wagreich, S. (2013). Effectiveness of a 10-week tier-1 response to intervention program in improving fine motor and visualmotor skills in general education kindergarten students. American Journal of Occupational Therapy, 67(5), 507-514. Poole, C.W. (2017). The effectiveness of occupational therapist guided remediation through handwriting home programs. (Unpublished doctoral dissertation). Eastern Kentucky University, Kentucky Salls, J., Benson, J. D., Hansen, M. A., Cole, K., & Pielielek, A. (2013). A comparison of the Handwriting Without Tears program and Peterson Directed Handwriting program on handwriting performance in typically developing first grade students. Journal of Occupational Therapy, Schools, & Early Intervention, 6(2), 131-142. Taras, H., Brennan, J., Gilbert, A., & Eck Reed, H. (2011). Effectiveness of occupational therapy strategies for teaching handwriting skills to kindergarten children. Journal of Occupational Therapy, Schools, & Early Intervention, 4(3-4), 236-246. Trummert, W. (2016). Effects of a collaborative RTI based integrated kindergarten motor and academic program (Unpublished doctoral dissertation). University of Puget Sound, Washington OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM Zylstra, S.E. & Pfeiffer, B. (2016). Effectiveness of a handwriting intervention with at-risk kindergartners. American Journal of Occupational Therapy, 70(3), 1-8. 40 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 41 Appendix A PEOP Model and Corresponding School-Based Components of Students and How They Relate to Occupational Performance and Participation Note. Adapted from The Person-Environment-Occupational Performance (PEOP) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy, C. Christiansen, C. Baum, & J. Bass, 2011, Foundations for practice in occupational therapy, p. 93-104. Copyright 2011 by Churchill Livingstone. The definitions for each component were related to this DCE project and specific descriptions were placed within each circle to provide an easy reference to show the interrelationship between the person, environment, occupation, and overall performance. OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 42 Appendix B OT-Based Activities in Classroom A Week/Day Day 1 Week 1 Feb 4 to Feb 8 Week 2 Feb 11 to Feb 15 Activity Focus Activity Materials Needed In-hand manipulation Hungry man: handful of beads, place one at a time Tennis ball with 1.5 slit, decorative beads (10 per ball) Day 2 Fine motor strengthening Hole Punching & Decorating Mittens Hole punch, colored construction paper (green, red, blue, pink, purple, orange), 43 copies of page number 1 Day 3 Shoulder Strengthening Prone Play: Pattern Block Building Block pattern cards, pattern blocks (foam blocks or cut out), laminated copies from page number 2 & 3 Day 4 Bilateral coordination Stringing Sight Words Pipe cleaners, letter beads, cards with sight words, tongs (incorporated fine motor strengthening too) Day 5 Visualmotor/visual perceptual Mazes and Hidden Pictures dry-erase markers, 6 laminated copies of page number 4 and 5 Day 6 Bilateral coordination I Love You to Pieces Scissors, construction paper, glue sticks, hole punch (incorporate fine motor strengthening), 43 copies of page number 6 Day 7 Shoulder Strengthening Prone Play: Valentines Day Roll and Cover with numbers Paper Dice in plastic jar, 6 copies of page number 7 Day 8 Visualmotor/visual perceptual Valentines Day Maze & Hidden Pictures Dry-erase markers, 3 laminated copies of page number 8, 6 laminated copies of page number 9, 6 laminated copies of page number 10 Day 9 In-hand manipulation Do-a-Dot Heart page with letters Red/Yellow foam circles, 6 laminated copies of page number 11 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM Day 10 Fine motor strengthening Day 11 Day 12 Week 3 Feb 18 to Feb 22 Sight Word BINGO BINGO cards, tongs, beads, original copy on page number 12 Presidents Day: NO SCHOOL Bilateral coordination Linking Letters to Make Words Laminated alphabet cards, links, original copy of letter cards on page number 13 and 14 Letter Construction Letter construction game (room 72) Day 13 Visual motor/visual perceptual Day 14 Fine motor strengthening Dont Spill the Beans with letter beads and tongs Large tweezers, letter beads, Dont Spill the Beans game, sight word cards Day 15 In-hand manipulation Gumball machine: Sight Words (colors) 6 copies of page number 15, decorative glass beads or pompoms, paper dice with colors written on it Day 16 Visualmotor/visual perceptual Color-by-number: reading colors 4-6 copies of page number 26, page number 27, page number 28 Day 17 Bilateral coordination Stringing Sight Words Pipe cleaners, letter beads, cards with sight words Day 18 Shoulder Strengthening Prone Play: Pattern Block Building Block pattern cards, pattern blocks Day 19 Fine motor strengthening Hungry Man (tennis ball) Tennis ball, decorative glass beads Week 4 Feb 25 to March 1 Day 20 NO CENTERS DUE TO SUBSTITUTE TEACHER 43 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM Day 21 Day 22 Week 5 March 4 to March 8 Day 23 Bilateral coordination Linking Letters to Make Words Visualmotor/visual perceptual Cat in the Hat with paint daubers No Formal Centers d/t substitute teacher Fine motor strengthening Visualmotor/visual perceptual Day 24 No Formal Centers d/t substitute teacher Day 25 Day 26 (students pulled during free time to complete on Tuesday/Thursday) Dont Spill the Beans with letter beads and tongs Laminated alphabet cards, links, original copy of letter cards page number 13 & 14 21 copies of page number #, red and blue paint daubers Large tweezers, letter beads, Dont Spill the Beans game Cat in the Hat with paint daubers (students pulled during free time to complete on Tuesday/Thursday) 21 copies of page number #, red and blue paint daubers NO CENTERS DUE TO SNOW DAY Visualmotor/visual perceptual St. Patricks Day Colorby-number: sight word COLORS St. Patricks Day I-Spy Pencils, dry-erase markers, 7 copies of page number 18, 7 copies of page number 19, 7 copies of page number 20, 6 laminated copies of page number 21 Push pin, foam mat, green construction paper, 21 copies of page number 20 Week 6 Day 27 Fine motor strengthening St. Patricks Day Pokey Play March 11 to March 15 Day 28 In-hand manipulation Manipulating coins into pot with number dice (only 2 groups d/t sub) Fake coins, container, print out of leprechaun, paper number dice Day 29 In-hand manipulation Manipulating coins into pot with number dice (two different groups) Tennis ball, decorative glass beads, sight word cards Day 30 Shoulder Strengthening Prone Play: Lucky Shamrock: Roll & Color Pot of Gold: Paper dice in plastic jar, crayons/markers, 43 copies of page number 22 44 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM Day 31 Shoulder Strengthening Coloring Under Table: Spelling sight words Large pieces of paper, tape, crayons Day 32 Bilateral coordination Spring Lacing Cards Lacing card template, hole punch, yarn, tape (optional for end of yarn) Day 33 Fine motor strengthening Hungry Man BINGO cards, tongs, beads Day 34 Visualmotor/visual perceptual Letters on Geoboard Geoboards, rubber bands Day 35 In-hand manipulation Shape Links: wiggle around linking together Manipulative Kit: shape links in room 72 Week 7 March 18 to March 22 45 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 46 Appendix C OT-Based Activities in Classroom B Week/Day Week 1 Activity Focus Activity Materials Needed Day 1 In-Hand Manipulation Hungry man: handful of beads, place one at a time Tennis ball with 1.5 slit, decorative beads (10 per ball) Day 2 Fine Motor Strengthening Hole Punching & Decorating Mittens Hole punch, colored construction paper (green, red, blue, pink, purple, orange), 43 copies of page number 1 Prone Play: Pattern Block Building Block pattern cards, pattern blocks (foam blocks or cut out), laminated copies from page number 2 & 3 Day 3 Day 4 Bilateral Coordination Stringing Sight Words Pipe cleaners, letter beads, cards with sight words, tongs (incorporated fine motor strengthening too) Day 5 Visual motor/visual Motor Mazes and Hidden Pictures dry-erase markers, 6 laminated copies of page number 4 and 5 Bilateral Coordination I Love You to Pieces Scissors, construction paper, glue sticks, hole punch (incorporate fine motor strengthening), 43 copies of page number 6 In-hand manipulation Valentines Day Roll and Cover Paper Dice in plastic jar, 6 copies of page number 7 Shoulder Strengthening Do-A-Dot Heart page with letters Red/Yellow foam circles, 6 laminated copies of page number 11 Day 6 Week 2 <3 Feb 11 to Feb 15 Shoulder Strengthening Day 7 Day 8 Day 9 Day 10 OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM Day 11 Day 12 Week 3 Feb 18 to Feb 22 Day 15 Day 16 Week 4 Feb 25 to March 1 Presidents Day: NO SCHOOL Bilateral Coordination Day 13 Day 14 Linking Letters to Make Words Bilateral Coordination Fine motor strengthening Visual Motor/visual Perceptual Shoulder Strengthening Day 19 Day 20 Laminated alphabet cards, links, original copy of letter cards on page number 13 and 14 NO CENTERS DUE TO 2-HOUR DELAY Linking Letters to Make Words Laminated alphabet cards, links, original copy of letter cards on page number 13 and 14 Dont Spill the Beans with letter beads and tongs Large tweezers, letter beads, Dont Spill the Beans game, sight word cards Color-by-number: reading colors 4-6 copies of page number 26, page number 27, page number 28 Prone Play: Gumball machine with Sight Words (colors) 6 laminated copies of page number #, decorative glass beads, dice with colors written on it Sight Word BINGO BINGO cards, tongs, beads, original copy on page number 12 Day 17 Day 18 47 Fine Motor Strengthening OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM Day 21 Week 5 March 4 to March 8 Bilateral coordination Linking Letters to Make Words Laminated alphabet cards, links, original copy of letter cards on page number 13 and 14 Fine Motor Strengthening Dont Spill the Beans with letter beads and tongs Large tweezers, letter beads, Dont Spill the Beans game, sight word cards Day 22 Day 23 Day 24 Day 25 Week 6 March 11 to March 15 48 NO CENTERS DUE TO SNOW DAY Day 26 Visual Motor/Visual Perceptual Day 27 Fine motor strengthening St. Patricks Day Pokey Play Push pin, foam mat, green construction paper, 21 copies of page number 20 Manipulating coins into pot with number dice Fake coins, container, print out of leprechaun; paper number dice Prone Play: Lucky Shamrock: Roll & Color Paper dice in plastic jar, crayons/markers, 43 copies of page number 22 Day 28 In-Hand Manipulation Day 29 Day 30 Shoulder Strengthening OT INTERVENTIONS IN A KINDERGARTEN CURRICULUM 49 Day 31 Shoulder Strengthening Coloring Under Table: Spelling Sight Words Large pieces of paper, tape, crayons Bilateral Coordination Spring Lacing Cards Lacing card template, hole punch, yarn, tape (optional for end of yarn) Visualmotor/visual perceptual Letters on Geoboard Geoboards, rubber bands Day 32 Week 7 March 18 to March 22 Day 33 Day 34 Day 35  ...

... Reclaiming Occupational Identity After Domestic Violence or Addiction Emily Nicole Mokol 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 A Capstone Project Entitled Reclaiming Occupational Identity After Domestic Violence or Addiction 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 Emily Nicole Mokol 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 Running Head: RECLAIMING OCCUPATIONAL IDENTITY Reclaiming Occupational Identity After Domestic Violence or Addiction Emily N. Mokol University of Indianapolis 1 RECLAIMING OCCUPATIOANL IDENTITY 2 Abstract Domestic violence and addiction recovery are similar in that they both can cause occupational deprivation and a loss of occupational identity (Javaherian, 2006; Steward & Fischer, 2015). This doctoral capstone experience took place at a Midwestern domestic violence shelter that also houses a womens recovery program. Through a needs assessment, it was determined that the organization as well as the populations served would benefit from the development of a life skills group program to teach skills to increase confidence and independence in living outside of the shelter. This group program was developed and the effectiveness of the groups and continuous quality improvement were found using an anonymous post-group survey. The survey consisted of four Likert scale questions to measure the effectiveness and three open ended questions to ensure quality improvement. Based on the participants responses, the groups were shown to be effective through the comparison of average scores of knowledge and confidence with the topics before the groups and after the groups. RECLAIMING OCCUPATIOANL IDENTITY 3 Reclaiming Occupational Identity After Domestic Violence or Addiction Introduction Occupational therapy helps people of all ages and abilities do the things they want and need to do through the therapeutic use of daily activities, or occupations. Occupational therapy practitioners enable people of all ages to live life to its fullest by helping them promote health, and prevent injury, illness, or disability, or to live with these as normal as possible (American Occupational Therapy Association, 2019). There are five domains of occupational therapy. These five domains are occupations, client factors, performance skills, performance patterns, and contexts and environments (American Occupational Therapy Association, 2014). Life skills fall under the domain of occupation in the category of instrumental activities of daily living (IADLs), and are critical occupations for sustaining independence. Instrumental activities of daily living include shopping, meal preparation and cleanup, financial management, child rearing, home establishment and management, communication management, care of others, care of pets, driving and community mobility, health management and maintenance, religious and spiritual activities and expression, and safety and emergency maintenance (AOTA, 2014). Someone who has experienced domestic violence may have limited occupational competence in IADLs as a result of the abuse. Likewise, someone who is recovering from an addiction may also have limited occupational competence in IADLs as a result of his or her addiction. Domestic violence is defined as the intentional intimidation, physical assault, battery, sexual assault, or any other abusive behavior used in order to systematically establish a pattern of power and control by one intimate partner over the other (National Coalition Against Domestic Violence, n.d.). It is common for multiple types of abuse to be present in the same intimate relationship (NCADV, n.d.). According to the National Coalition Against Domestic Violence RECLAIMING OCCUPATIOANL IDENTITY 4 (n.d.), one in four women and one in nine men experience some form of domestic violence in their lifetime. Experiencing abuse has a large impact on every aspect of the victims life, which in turn affects the individuals ability to engage in daily occupations (Javaherian, 2006). Addiction is defined as a complex chronic disease that affects functioning of the mind and body (Center on Addiction, 2018). It causes damage to social and familial relationships as well as schools, workplaces, and neighborhoods. The most common symptoms of addiction include continual use despite consequences, fixation on using, inability to quit, increased tolerance, and withdrawal. According to the Center on Addiction (2018) one in seven Americans age 12 or older have an addiction to some substance. Substance use is an occupation in itself and will take priority over other occupations for the user (Wasmuth, Crabtree, & Scott, 2014). The purpose of this doctoral capstone project is to design a group program that pulls from the foundations of occupational therapy to increase independence in women in addictions recovery and survivors of domestic violence. The group program derived from this project will focus on IADL training and leisure exploration occupations. Literature Review Domestic Violence Characteristics. Domestic violence can impact all aspects of a person, including physical, psychological, and emotional health as well as self-esteem and feelings of isolation (Francis, Loxton, & James, 2017). When asking survivors to formulate goals for domestic violence recovery, common themes found by researchers were goals about gaining self-esteem and insight into ones own feelings (Lloyd et al., 2017). Experiencing abuse as a child, either through witnessing domestic abuse with parents or being abused oneself nearly doubles ones RECLAIMING OCCUPATIOANL IDENTITY 5 likelihood of being in an abusive relationship as an adult (Akyazi, Tabo, Guveli, lnem, & Oflaz, 2018). Adults who had these experiences as a child often have a difficult time identifying abuse in their relationships, as they may normalize these behaviors (Francis et al., 2017). Victims may try to convince themselves that they are not in an abusive relationship to protect themselves or their children from feelings of shame, fear, failure, or guilt associated with being in an abusive relationship. Sometimes it takes leaving the relationship for the victim to then see the abusive behaviors as what they are (Francis et al., 2017). Power and control wheel. The Power and Control wheel is a frequently used diagram that demonstrates how an abuser uses the different types of abuse to establish power and control over the victim (Domestic Abuse Intervention Project, n.d.). Physical and sexual assaults, or the threat of them, are the most common forms of domestic violence. Regular use of other abusive behaviors, combined with these, establishes a much larger pattern of abuse. The physical attacks may happen somewhat infrequently, but the fear of violent attacks allows the abuser to control the victims life. The Power and Control Wheel was developed to help others understand the patterns of abuse commonly used by abusers (DAIP, n.d.). The Power and Control Wheel can be seen in Figure 1. At the center of the wheel is power and control. Spurring from the wheel are the different types of abuse, including coercion and threats, intimidation, isolation, emotional abuse, minimizing, denying, or blaming, using children, economic abuse, and male privilege. Physical and sexual abuses encapsulate all of these to complete the wheel (DAIP, n.d.). Occupational therapy and domestic violence. Survivors of domestic violence have lost a lot of their independence and often have needs in the occupations of activities of daily living (ADLs), IADLs, work, education, leisure, play, and social participation (Javaherian, 2006). It is possible that survivors are learning how to participate in some of these occupations for the first RECLAIMING OCCUPATIOANL IDENTITY 6 time after leaving the abusing relationship. Occupational therapists are not working with this population to specifically treat the individual for being a survivor of violence or in the shelters, but instead occupational therapists typically work with victims of domestic violence in other settings where the client is being treated (Javaherian, 2006). This population may require some special care or need assistance in getting help and occupational therapists should be prepared to assist them find resources (Javaherian, 2006). This is a sensitive population and it is very important to maintain a therapeutic relationship with the client and they may require a different approach than other clients (Javaherian-dysinger & Underwood, 2011). An occupational therapist could analyze the current educational programs at the facility, and if the site has a program that addresses these and determine how to integrate more OT ideas into the pre-existing program. The occupational therapist could synthesize the new program with a pre-existing one, or could personalize the program to each client and tailor the program to the individual. The occupational therapist could evaluate by conducting interviews and using functional assessments determine the individual clients occupational needs and to develop an intervention plan (Javaherian-dysinger & Underwood, 2011). Addiction Recovery Etiology of substance use disorder. Substance use disorder results from the use of drugs in 10 different classes (American Psychiatric Association, 2013). These classes are: alcohol, caffeine, cannabis, hallucinogens, inhalants, opioids, sedatives, stimulants, tobacco, and other or unspecified drugs. Caffeine is the only substance that does contribute to substance use disorder. When a person uses a drug, he or she will experience a rewarding experience described as a high. Sometimes the euphoric high is so intense that the person will neglect other daily activities in favor of the drug. Every person does not have the same disposition to substance use RECLAIMING OCCUPATIOANL IDENTITY 7 disorder; a persons genetics and environment can influence his or her self-control and incidentally, his or her likelihood to use substances (APA, 2013). In the DSM-5, there are four criteria for the diagnosis of substance use disorder, each of which has symptoms described: A. Impaired Control; a. Overuse of the substance, either taking larger quantities or for a longer span than recommended; b. Desire to decrease or stop substance use but unable; c. Time getting, using, or recovering from the use of the substance takes up a large part of day; d. Experiencing cravings and urges to use the substance; B. Social Impairment; a. Not managing school, work, or home tasks due to substance use; b. Continuing use when substance use is straining relationships; c. Giving up meaningful activities because of substance use; C. Risky Use; a. Continuing substance use when it creates a dangerous situation; b. Continuing to use, even after physical or psychological diagnosis that could be caused by or aggravated by the substance; D. Pharmacological Indicators: Tolerance and Withdrawal; a. Requiring a larger dose to get the desired affect; b. Developing withdrawal symptoms that are relieved by taking the substance (APA, 2013). RECLAIMING OCCUPATIOANL IDENTITY 8 When a person demonstrates at least two of the four criteria, they qualify for the substance use disorder diagnosis. The number of symptoms demonstrated determines the severity of substance use disorder. Two to three symptoms indicates a mild severity, four to five indicates a moderate severity, and six or more symptoms indicate severe substance use disorder (APA, 2013). Most people who seek addiction recovery services have already tried to quit on their own and failed (Melemis, 2015). A large part of recovery services focus on relapse prevention by seeking to provide skills and support to the participants. There are three stages of relapse; relapse is actually a gradual process. The first stage of relapse is emotional relapse. In this stage the individual is not explicitly thinking about using, instead they may think about the last time they used and how they do not want to be that way again. In this stage the individual may internalize emotions and isolate oneself, not go to or share at meetings, shift focus to others, and/or lack self-care. As time in this stage increases, the individual begins to feel uncomfortable with his or herself and begins to think of ways to escape. Following the emotional relapse stage is the mental relapse stage, which is an internal fight where part of the individual is urging the individual to use while another part of the individual is resisting. (Melemis, 2015). As individuals go deeper into the mental relapse stage they begin to resist the urge to use less and less and may even create a plan for relapse. After mental relapse reaches the final stage, physical relapse; where the individual is using drugs again (Melemis, 2015). Physical relapse is the most difficult stage to stop. While the individual may believe that he or she will just use a small amount, and then go back to abstaining from the substance, any amount of physical relapse can result in uncontrollable use or thinking about use (Melemis, 2015). Occupational therapy and addiction recovery. People who suffer from addictions will often identify stigma against addiction as a barrier to feelings of belonging (Blank, Finlay, & RECLAIMING OCCUPATIOANL IDENTITY 9 Prior, 2016). This means that these individuals may not engage in social interactions as a result of feeling like they do not belong with general society due to feelings of stigmatization. Therefore, people with addictions tend to create social environments filled with other people who are addicted or in recovery for themselves, and isolate themselves from others, including family and friends (Blank et al., 2016). Steward and Fischer (2015) argue that addiction is not an occupation in itself, but rather is the excessive use of engagement in the occupation of drug use. Based on this assumption, it can be inferred that occupational therapy does not address addiction specifically, but rather the engagement in unhealthy occupations that lead to addiction. This sets occupational therapy apart from other substance use treatments as it addresses the drug use specifically, rather than the addictive personality that encourages continued drug use (Steward & Fischer, 2015). Addictions directly affect a persons identity, motivation, and routines as defined by the American Occupational Therapy Association (2014; Wasmuth et al., 2014) Occupational therapy can address the unhealthy occupation of drug use through introducing healthy occupations as a replacement. Wasmuth and Pritchard (2016) found that engagement in a community-based theater program increased individuals with substance use disorders accountability and occupational engagement. This community-based program provided a new social environment and a new occupation for the participants (Wasmuth & Pritchard, 2016). Occupational therapy brings a fresh perspective to addiction recovery, as there is no other profession that addresses ADLs and IADLs, lifestyle choices, social environments/participation, time management, transportation, and community reintegration. Occupational therapys unique scope of practice allows the occupational therapist to address the client as a whole as well as the individual factors of the client and his or her surroundings in order to treat the occupation of substance use (Robinson, Fisher, & Broussard, 2016). Through RECLAIMING OCCUPATIOANL IDENTITY 10 the replacement of substance use for a healthy occupation, occupational therapy could be a key step in preventing relapse (Wasmuth et al., 2014). Individuals who engage in an activity that they enjoy may help them to ease their minds and reduce anxiety and emotional relapse while they are engaging in the activity (Wasmuth et al., 2014). Theoretical Support Diffusion of Innovations Theory. The Diffusion of Innovations Theory requires not only introducing a new construct, but also taking the time to explain it and advocate for the idea, finding an accepting social system that wants to adopt the innovation, and communication channels, how the word of the idea will spread (Scaffa, Reitz, & Pizzi, 2010). This theory originally developed to describe how individuals adopt new products or behaviors (Scaffa et al., 2010). In the Diffusion of Innovations Theory the innovator is the one who came up with the idea, then the early adopters are the ones who take the idea to influence society, sometimes taking credit for the idea (Scaffa et al., 2010). Early majority adopters are a large group that follows what the early adopters do. The late adopters tend to wait to adopt the new idea until overwhelmed by peer pressure. Finally, the laggards are the last to adopt the idea (Scaffa et al., 2010). The doctoral candidate developing this program is the innovator of the idea and the partnering organization is the early adopter for the womens recovery and domestic violence survivor programs. It is the hope of the doctoral candidate that after the group is adopted by those programs that they can then begin to be used with the organizations community dwelling programs and perhaps even in the organizations jail program as the early majority adopters. The group protocols should be detailed enough for the idea to be diffused to the different programs. These steps will be used to develop the program and hopefully spread the word of the program to RECLAIMING OCCUPATIOANL IDENTITY 11 occupational therapists and other domestic violence shelters in order to get occupational therapy more involved with these populations. Model of Occupational Empowerment. The Model of Occupational Empowerment demonstrates the relations between environments, occupational deprivation, and learned helplessness and how these can be remediated by occupational therapy programming (Fisher & Hotchkiss, 2008). This model shows how a disempowering environment, such as poverty, substance abuse, physical abuse, legal programs, and limited social support can cause occupational deprivation that results in occupational incompetence and an unhealthy occupational identity. This occupational incompetence and unhealthy identity then reinforce learned helplessness, as the individual does not feel confident enough to change behavior patterns that promote homelessness, joblessness, limited education, and decreased health and wellness. Through an empowering occupational therapy program such as empowerment groups, power groups, social support, and student involvement this cycle can be broken to empower the participants to develop positive occupational identities and competence. This goes on to promote positive occupational change that results in self-efficacy and behaviors that come from meeting goals, maintaining employment, establishing a home, and achieving family unity (Fisher & Hotchkiss, 2008). This will be optimal to guide this project due to physical abuse and violence and substance abuse defining disempowering environments, and from what was been learned through a needs assessment, many residents served at this organization are incompetent in some IADLs, have limited social support and limited education, and do not have jobs. These populations will greatly benefit from an empowerment occupational therapy program. Cattaneo and Goodman (2015) found that The Empowerment Process Model was effective when used with domestic violence survivors. This model is similar to the Model of RECLAIMING OCCUPATIOANL IDENTITY 12 Occupational Empowerment in that it shows how social context impact ones ability to define goals, carry out actions to lead to goal achievement, and observe the impact of these actions. The model shows how these three steps each can influence and be influenced by community resources, knowledge, skills, and self-efficacy (Cattaneo & Goodman, 2015). Although they are different models, The Empowerment Process Model and Model of Occupational Empowerment are similar, and therefore it can be assumed that the Model of Occupational Empowerment will be effective to be used with the domestic violence survivor population being served as the Empowerment Process Model has been shown to be effective. The Model of Occupational Empowerment is a better fit for this specific project due to this projects specific focus on increasing occupational competence and confidence in the participants. The present doctoral capstone projects purpose is to create a group program that would allow domestic violence survivors and women in addiction recovery to explore leisure occupations and gain knowledge about performing IADLs and developing work skills. It would increase the clients occupational participation and performance in these areas. This project is aimed to at developing a program that they can continue to implement with the residents of the shelter in order to help them prepare for life outside of the shelter. Screening/Evaluation Needs Assessment The needs assessment was conducted to better understand the needs of the populations served as well as the organization itself. The needs assessment was given to several staff members including case managers, client assistants, and legal advocates. The questions that made up the needs assessment can be found in Table 1. The American Occupational Therapy Association (2017) lists formal education participation, sleep preparation and participation, RECLAIMING OCCUPATIOANL IDENTITY 13 health management, employment seeking and acquisition, care of others, play, work performance, safety and emergency maintenance, social participation, and financial management as areas of occupation that are affected by domestic violence. Researchers looking at substance use disorder and occupational therapy found that there are few programs that focus on restoring old or engaging in new occupations for this population (Leppard, Ramsay, Duncan, Malachowski, & Davis, 2018). Women who engage in leisure activities while in addiction recovery are less likely to relapse than those who do not (Leppard et al., 2018). When someone engages in substance use as an occupation, his or her occupational identity is defined by the substance use. When in recovery, the individual loses that identity (Wasmuth, Crabtree, & Scott, 2014). As predicted by the previous research, needs identified by the organization staff included life skills deficits such as budgeting and financial management, personal care and hygiene, organizational skills, parenting, and social skills, as well as leisure activity deficits in the clients. Staff also identified a lack of healthy coping skills by the clients, and the current groups being broad, generally unorganized, and irregularly timed. Specific coping skills that were described as ones that would be valuable for the populations served by this organization included adjusting to change and/or the loss of a relationship, dealing with guilt and grief, and self-expression. The staff stated that there are not a lot of leisure activity exploration options here at the shelter, but womens recovery residents are allowed a two-hour pass per day where they can leave the shelter to do leisure activities and the domestic violence residents are able to come and go as long as they are back by curfew at 10:00 p.m. The organization has passes to the local YMCA that the residents are able to use during their pass time for exercise. The organization encourages the womens recovery residents to be engaged in Alcoholics Anonymous and Narcotics Anonymous RECLAIMING OCCUPATIOANL IDENTITY 14 functions such as dances and barbeques for socialization and leisure, and will make extensions to pass time on an individual basis so residents can go to these events. Residents are also encouraged to connect with friends and family while staying at the shelter. When asked about the residents general knowledge base staff said it depends on the resident and their background, but they tend to see a need of basic knowledge in life skills areas. One staff member suggested starting with a basic question to determine the knowledge level at the beginning of each group. Psychological factors that affect the residents abilities to sustain an independent lifestyle were described by staff as other mental health diagnoses and lack of mental health care, fear, problem solving, prioritizing, having backup plans, and emotional pain. The staff described the difficulty adjusting to the shelter roles as due to the loss of freedom and privacy, struggling with the structure and meeting with their case managers, and following the rules. One staff member reported that in her opinion, the residents that have the easiest time adjusting to the shelter are the womens recovery residents who come directly from jail, as they are already used to community living, rules, and structure. Priorities for the shelter were to see the residents succeed, encouraging them to seek psychological help as needed, finding them housing for when they leave the shelter, and the Protective Order Project the shelter houses. Barriers seen by the staff when providing services to the residents included fear/apprehension about the shelter, fear of the shelter working with legal systems like Child Protective Services, residents being untrusting and resentful, and their other mental health conditions being untreated. Current groups topics addressed by the organization are domestic violence education, art group, womens recovery group, nutrition, personal enrichment, and previously, parenting. One of the staff members described a weakness of the current groups being it is hard to schedule them at a time where all residents of the shelter can attend. The residents often have a busy schedule, RECLAIMING OCCUPATIOANL IDENTITY 15 which often includes court meetings, child visitations, work or searching for work, any appointments they may have, and for the womens recovery program an intensive outpatient program and probation hearings. The current groups all combine the domestic violence and womens recovery programs with the exception of the womens recovery program group that meets once a week. Most staff reported that the needs of both populations show a lot of overlap and the residents benefitting from engaging with each other in groups. One staff member reported that she believed the residents would benefit more from separate groups and topics. Chief concerns with the current groups were described as the difficulty finding a time that accommodates all residents, limited group topics, and that the residents are not getting enough from the groups when they leave the shelter unsuccessfully. Comparing to Other Areas of Occupation Therapy Refugees often experience disruptions in their occupational lives due to displacement and resettlement (Crandall & Smith, 2015). The new environment is often more technologically advanced than their original environment and the refugees may have trouble adjusting to this new technology. Some may be coming from areas that do not have electricity. Refugees often lack formal education, and even those who are educated struggle finding employment due to their credentials being unrecognized in their new country. Crandell and Smith (2015) developed a life skills program to address the changes the refugees are facing. This population benefitted from sessions on grocery shopping, managing finances, leisure exploration, crafts, cooking, and cultural sharing. Although this population is different than the populations served, the residents at this shelter have moved to a new environment with different rules and may not have background information on life skills. The refugees who participated in Crandell and Smiths RECLAIMING OCCUPATIOANL IDENTITY 16 (2015) life skills program reported that the groups were very helpful but they would forget the information if they were not given handouts. Occupational therapists have a role in health promotion. In order to promote health, it must be ensured that individuals are participating in their meaningful occupations (Holmberg & Ringsberg, 2014). Occupational therapists can work in health promotion through helping clients by providing education for health and assisting to develop personal and life skills. Health promotion is a prerequisite for empowerment (Holmberg & Ringsberg, 2014), which is vital for the populations served by this organization as mentioned in the literature review and why the Model of Occupational Empowerment was chosen to guide this project. Occupational therapy in health promotion tends to be done at the organizational or societal level, striving to create a community that is more inclusive and promotes health more effectively (Holmberg & Ringsberg, 2014). This aligns with the goals of this project as well as what was suggested by the needs assessment results. The populations served by this organization would benefit from more effective health promotion through more effective engagement in their meaningful occupations. Adults with intellectual disabilities are at risk for occupational alienation without the opportunity to engage in meaningful activities and enrich their occupational experiences (Mahoney, Roberts, Bryze & Kent, 2016). The individuals that participate in day programs are often more supported and given more opportunities to engage in meaningful occupations than those who do not because of the programming at the day programs. Staff support at these programs also encourages the individuals to participate in the programs (Mahoney et al., 2016). Although the populations served at this organization are different, the same applies. These populations are at risk if not given the opportunity to engage in meaningful occupations. As RECLAIMING OCCUPATIOANL IDENTITY 17 mentioned in the needs assessment, providing support and programs to promote occupational engagement and competence is something that currently lacking at this organization. Implementation Participants of this doctoral capstone experience implementation were all women ages 25 to 55 who were staying at a domestic violence/womens recovery program at a Midwestern nonprofit shelter. Group attendance is strongly encouraged at the facility if the residents are in the building at the time of the group. Residents are discouraged from taking pass time during scheduled group times; therefore residents typically only miss groups for work, intensive outpatient program, court, or school. Informed consent was verbally obtained by all participants during each group session, the group leader explained that the post surveys will be used to write a paper for the purpose of this doctoral capstone experience about the groups effectiveness and that no participant identifiers will be collected or used. Post-surveys were anonymously filled out and placed upside down in the center of the table at the end of group to promote anonymity. The two groups were each rated independently and a black star identifier was placed at the bottom right corner of post-surveys to indicate that these belonged in the womens recovery group. This strategy helped to distinguish between the two groups while maintaining anonymity. The life skills group program implemented consisted of nine group topics: resume building, budgeting, meal planning and grocery shopping, leisure exploration, coping skills, positive self-expression, parenting, health management, and home management. Groups occurred twice a week, so all groups were administered in a five-week span. The groups were all evaluated in a post-group survey by the attendees, and prior to sessions occurring, the site mentor approved each group protocol. Each group topic was researched, a group activity was developed, and the protocol was written. Protocols included questions for discussion to process, generalize, RECLAIMING OCCUPATIOANL IDENTITY 18 and apply the group topic to everyday life. All group activity handouts were the participants to keep for reference upon leaving the facility. Once the group had been administered, group feedback was used to make any needed adjustments. Upon completion of any adjustments being made, the groups were placed in a binder with a protocol and copies of all handouts with a section for each group. This allows for the groups to be effectively replicated by facility staff or interns upon the completion of this doctoral capstone experience. Digital copies of all materials were additionally provided to the facility via flash drive. The post-survey consisted of four Likert-scale style questions and three open-ended questions. The Likert-scale questions were used to measure the effectiveness of the group, while the open-ended questions were used to make adjustments to the groups to increase their effectiveness. The Likert-scale questions asked the attendee to rate confidence and knowledge before and after the group on a scale of one (not at all) to five (very much/well). Averages and standard deviations from the post-group survey Likert-scale questions are available in Table 2. Comparisons of the before and after Likert-scale questions can be found in Figure 2. Each of the groups ratings for confidence and knowledge before the group are lower than the groups ratings for confidence and knowledge after the group, which indicates that the participants were able to increase the confidence and knowledge in the topics to increase independence upon discharge from the facility. Leadership This implementation process was made possible by the leadership skills of this doctoral candidate. Leadership skills were fundamental to this implementation due to the group structure. The doctoral candidate led the groups independently and was utilized as a source of guidance by the attendees. This doctoral capstone experience project encompassed self-directed program RECLAIMING OCCUPATIOANL IDENTITY 19 development. The doctoral candidate had to complete a needs assessment and take information derived from that to develop the group programs and individual session content. It was important to make sure that the programs developed met the needs of the doctoral candidate as well as of the facility, and to be sustainable upon completion of the doctoral capstone experience. Due to the partnering organization being non-profit, it was important for the group activities to be low cost and to utilize resources already at the facility. The doctoral candidate had to complete a lot of exploration at the facility to ensure that the groups were appropriate but still engaging for the participants. The doctoral candidate met with numerous staff at the organization in order to determine the specific needs of the organization and the resources that were available. Staff Development Staff development occurred during this doctoral capstone experience due to the promotion and advocacy for the profession of occupational therapy. Many of the staff at the site did not know what all occupational therapy entails or how it could be used with the populations served. The doctoral candidate created a handout for the staff and social work students during the doctoral capstone experience that describes occupational therapy and how it can be implemented in many different fields. The doctoral candidate would also frequently discuss the group protocols being developed with staff members and explained how these topics will be beneficial for the domestic violence survivor and substance abuse recovery residents at the facility. The director of the facility asked that the doctoral candidate share the group post-surveys with her in order to adopt the post-survey for all groups performed by staff members. It is the hope of the facility staff that using the post-survey will be an effective way to catalog the group services provided in order to receive additional grant funding for the facility. RECLAIMING OCCUPATIOANL IDENTITY 20 Discontinuation and Outcome Quality improvement was completed throughout this project through feedback from the site mentor and post-group surveys. The site mentor read and approved all groups prior to the doctoral candidate leading the groups, and any modifications suggested were made prior to the initiation of group that week. An example of a modification made was adding a sheet to the budgeting group that lists average costs of living locally for those group members who do not have experience with paying their own expenses. Quality improvement occurred through the post-group surveys in the three open ended questions. The open ended questions asked one thing the participant liked about the group, one thing the participant would change about the group, and one thing the participant learned from the group. These questions were used to determine if the group participants were learning what the group was intended to teach, what worked well in the group, and how the quality of the group could be improved in the future. Expected outcomes of this doctoral capstone experience were that the doctoral candidate would: demonstrate skills and foundational knowledge in working with survivors of domestic violence and women in recovery; apply critical thinking and evidence-based principles, grounded in theories of occupational, in order to develop a program that will influence the health and wellbeing of the populations served; demonstrate professional development and continuing competence through regular meetings with the site mentor and reflecting throughout the experience; demonstrate holistic and client-centered practice that reflects the values of the partnering organization as well as the foundations of occupational therapy; use leadership and advocacy skills to advocate for the populations served; and demonstrate competence in the implementation of theory and program development in a way that meats the needs of the organization and the populations served. Goals developed to accomplish these objectives were RECLAIMING OCCUPATIOANL IDENTITY 21 that the doctoral candidate would develop at least six occupation-based life-skills groups for the residents of the shelter, create an additional educational program for the populations served to help them advocate for themselves which they would rate at least a 3/5 on a confidence and a knowledge of the area scale, and that the doctoral candidate would score herself at least a 6/10 on a Likert scale addressing confidence when working with vulnerable populations. These goals were all the Expected, or 0, score on a goal attainment scale. All three of these goals were achieved or surpassed in the completion of this doctoral capstone experience. Response to Society Needs As established in the literature review of this paper, survivors of domestic violence have lost their independence while in the abusive situation. While in the abusive relationship they experience occupational deprivation in ADLs, IADLs, work, education, leisure, play, and social participation (Javaherian, 2006). Depending on the length of the abusive relationship and the survivors experiences prior to the relationship, it is a very real possibility that that individual never got the opportunity to engage in those activities (Javaherian, 2006). Someone recovering from substance use will likely experience occupational deprivation in these occupations as well due to their excessive engagement in the occupation of drug use (Steward and Fischer, 2015). This doctoral capstone experience addresses societys needs for these populations by simulating engagement in these life skills, providing ways to engage in these occupations, and giving informational handouts to encourage carry over to independent living outside of the shelter. The group on leisure exploration is especially important for the womens recovery population as it offers healthy occupations to replace the unhealthy occupation of substance abuse in order to prevent relapse (Wasmuth et al., 2014). RECLAIMING OCCUPATIOANL IDENTITY 22 Overall Learning Throughout this project the doctoral candidate has interacted with organization staff, residents, residents families, and the organizations board of directors. The doctoral candidate attended the organizations full staff meetings each month where the staff and board of directors would discuss residents, shelter activities, upcoming trainings, and any other concerns that have arisen. The doctoral candidate also sat in on a pre-admission visit for a potential resident who is blind. The doctoral candidate gave insight into potential, simple modifications that could make the residence more accessible for the blind individual, and once that individual moved into the shelter, the doctoral candidate assisted with shelter mobility until the individual was safe on her own. The shelter staff frequently asked the doctoral candidate to meet with clients to go over different IADL and ADL tasks and other topics more in depth than the groups covered. The doctoral candidate learned effective communication with superiors and gained confidence in addressing the board members in a professional manner. The board members and staff valued the doctoral candidates opinion and the doctoral candidate learned how to interact with other disciplines as peers, rather than as a student looking for direction. Due to the self-directed nature of this doctoral capstone experience, the doctoral candidate developed increased time management skills, communication skills, and confidence when working with clients in groups and one-on-one. The doctoral candidate would effectively communicate with the residents of this shelter daily. The doctoral candidate would have groups twice a week with the residents where there were very specific, intentional interactions between the doctoral candidate and the residents. The doctoral candidate would also interact with the residents by walking around the shelter and striking up conversations to build rapport and to stay updated on their lives and the challenges RECLAIMING OCCUPATIOANL IDENTITY 23 they face. The doctoral candidate would suggest meeting with a resident who is facing a challenge that the foundations of occupational therapy could help to solve. The doctoral candidate would schedule a time to meet with the resident and then prepare for the meeting. The doctoral candidate actively engaged with the residents to ensure their comfort and confidence in the doctoral candidates ability to address their problems and concerns. The doctoral candidate came to be viewed as a source of knowledge and support by the residents. Leadership and Advocacy The doctoral candidate grew in leadership skills while completing this doctoral capstone experience. This is in part due to the self-directed nature of the doctoral capstone experience. The doctoral candidate independently developed all groups before receiving feedback from the site mentor, volunteered for side jobs that were not included in the doctoral capstone experience outcomes, and participated in full staff meetings. The doctoral candidate was viewed as a knowledgeable source to the residents. The doctoral candidate would facilitate a discussion after each group to help the participants process, generalize, and apply the information to everyday life. Facilitating discussion was difficult for the doctoral candidate at first, due to lack of participation from the group members, but with practice the doctoral candidate became more comfortable encouraging the participants to talk with the group. The life skills groups taught skills to help the participants advocate for themselves outside of shelter, as well as advocated for the importance of occupational therapy to the participants and the other disciplines represented at the facility. The doctoral candidate actively advocated for occupational therapy at all full staff meetings and advocated for occupational therapy when discussing concerns about clients with other staff. RECLAIMING OCCUPATIOANL IDENTITY 24 Conclusion The program developed during this doctoral capstone experience was found to be effective with the populations it was created to address. The staff at the organization stated that they noticed a difference in many of the residents, as well as the residents Likert-scale ratings on the groups post-surveys showing that on average the participants gained confidence and knowledge on the topic. The group protocols developed during this doctoral capstone experience will continue to be used by the facility to teach the residents life-skills to live independently outside of the shelter. RECLAIMING OCCUPATIOANL IDENTITY 25 References Addiction.com. (n.d.). Parenting in recovery: Tips for addicts with children. Retrieved from https://www.addiction.com/in-recovery/relationships/parenting/ Akyazi, S., Tabo, A., Guveli, H., lnem, M. C., & Oflaz, S. (2018). Domestic violence victims in shelters: What do we know about their mental health?. Community Mental Health Journal, 54(3), 361-369. American Occupational Therapy Association. (2019). What is Occupational Therapy. 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Weekly meal planner template with grocery list Mary Martha Mama. Retrieved from https://www.marymarthamama.com/style/health-fitness/weekly-mealplanner-template-with-grocery-list/ RECLAIMING OCCUPATIOANL IDENTITY 29 National Coalition Against Domestic Violence. (n.d.). NCADV | National Coalition Against Domestic Violence. Retrieved from https://ncadv.org/learn-more Olson, E. (2016). How many hours of sleep do you need? Retrieved from https://www.mayoclinic.org/healthy-lifestyle/adult-health/expert-answers/how-manyhours-of-sleep-are-enough/faq-20057898 Pennsylvania Family Support Alliance. (2011). Talking About Addiction and Recovery. Retrieved from https://www.cwla.org/wp-content/uploads/2016/08/C8--RecoveringFamilies-Handouts.pdf Prison Fellowship. (2019). How to write a resume when you have a criminal record. Retrieved from https://www.prisonfellowship.org/resources/support-friends-family-ofprisoners/supporting-successful-prisoner-reentry/write-resume-criminal-record/ Robinson, M., Fisher, T. F., & Broussard, K. (2016). Role of occupational therapy in case management and care coordination for clients with complex conditions. American Journal of Occupational Therapy, 70(2), 7002090010p1-7002090010p6. Scaffa, M.E., Reitz, S.M., & Pizzi, M. A., (2010). Occupational therapy in the promotion of health and wellness. Philadelphia, PA: FA Davis Company. Semeco, A. (2017). The top 10 benefits of regular exercise. Retrieved from https://www.healthline.com/nutrition/10-benefits-of-exercise Serer, S. (2017). How to Describe Yourself: 180 Words for Your Positive Qualities. Retrieved from https://owlcation.com/humanities/how-to-describe-yourself Social Worker's Toolbox. (2017). Parenting worksheets (assessment tool). 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Theater-based community engagement project for veterans recovering from substance use disorders. American Journal of Occupational Therapy, 70(4), 7004250020p1-7004250020p11. West Virginia Department of Education. (n.d.). Developmentally-appropriate physical activity ideas. Retrieved from https://wvde.state.wv.us/child-nutrition/leap-of-taste/physicalactivity/physical-activity-ideas/ RECLAIMING OCCUPATIOANL IDENTITY 31 Table 1 Needs Assessment Questionnaire Question 1 What areas do you feel the residents could improve in? i.e. Financial management, childcare, meal prep, shopping, etc. 2 What type of coping skills do you think would be most valuable for the populations served? 3 Do you have a way for them to currently explore leisure activities, if so, what are they? 4 How common do you see domestic residents go back to their abusers? Does this reduce with more stays at the shelter? 5 Do you think that the areas of improvement for the residents are the same for womens recovery and domestic violence residents or do you think they would benefit from separate group topics/sessions? 6 Do you find that the residents have a base knowledge about financial management, budget planning, childcare, meal preparation, sexual health, communication management, health management, social participation, etc., when they get to the shelter or do you think that they would benefit from some basic education as well? 7 What group topics are currently being used? 8 In what way do you see psychological factors affecting the residents ability to sustain an independent lifestyle? 9 Do you find that new residents have a difficult time adjusting to the roles and routines expected at the shelter for the womens recovery program? What about the domestic violence program? 10 What are your priorities for the shelter right now? 11 What barriers do you experience when providing services to your residents? 12 What is your chief concern with the current group programs? Note. This questionnaire was administered to the organization staff verbally. As all questions are open ended the answers varied in length. Depending on the response to the question, some would lead to further discussion that is not listed on the questionnaire. Question 4 was unable to be answered by anyone, there is not any current research on re-admittance rates at this organization but is a potential area for further research. 32 RECLAIMING OCCUPATIOANL IDENTITY Table 2 Group Statistics Table Number of Participants Average knowledge before the group Standard deviation knowledge before the group Average confidence before the group Standard deviation confidence before the group Average knowledge after the group Standard deviation knowledge after the group Average confidence after the group Standard deviation confidence after the group Resume Building 7 3.71 1.11 3.00 1.53 4.57 0.53 4.43 2.00 Budgeting 7 2.86 1.21 2.14 1.07 4.29 0.76 4.14 1.07 Meal Planning 10 4.20 1.03 4.30 1.06 4.70 0.67 4.70 0.67 Leisure Exploration 13 4.92 1.03 3.77 1.30 4.38 0.77 4.46 0.78 Coping Skills 10 3.20 0.96 3.00 1.40 4.60 0.52 4.10 0.99 SelfExpression 10 3.40 0.97 3.35 1.16 4.40 0.70 4.20 0.79 Parenting 6 4.33 0.52 4.17 0.75 4.67 0.82 4.83 0.41 Health Management 13 4.54 0.88 4.15 0.90 4.85 0.55 4.85 0.55 Home Management 8 4.50 0.93 4.38 0.92 4.88 0.35 4.88 0.35 Note. This table shows the average and standard deviation for each of the Likert-scale questions on the post-group survey as well as the number of participants in each group. RECLAIMING OCCUPATIOANL IDENTITY 33 Figure 1. Power and Control Wheel Figure 1. The Power and Control Wheel, developed by the Domestic Abuse Intervention Project (n.d.), demonstrates the different types of abuse used to establish power and control over the victim in between acts of physical and sexual assault. 34 RECLAIMING OCCUPATIOANL IDENTITY Figure 2. Group Effectiveness 5 4.5 4 3.5 3 2.5 2 1.5 1 0.5 0 Avg. Before Understanding Avg. Before Confidence Avg. After Understanding Avg. After Confidence Figure 2. This chart shows the Likert-scale ratings from the participants of each group. The blue bars represent the average understanding of the group topic by the members for the corresponding group. The red bars represent the average confidence before the group in that topic. The green bar represents the average understanding after the groups completion by the group members. The purple bar represents the average confidence felt by the group members in their independence with that topic after the completion of the group.  ...

... Running head: PARTICIPATION IN SPIRITUALITY Enhancing Participation in Spirituality for Individuals with Disabilities and their Families McKinzie Mitchell August 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, OTD Running head: PARTICIPATION IN SPIRITUALITY A Capstone Project Entitled Enhancing Participation in Spirituality for Individuals 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 McKinzie Mitchell 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 PARTICIPATION IN SPIRITUALITY 3 Abstract Caregivers and parents of children with disabilities face barriers to participation in spiritual settings and community events. Families accepted into church environments have been shown to have increased participation and quality of life. Through informal interviews with staff and family members within the congregation of Emmanuel Church analysis was compiled revealing a pressing need for an environment where families of children with a disability have an opportunity to experience spiritual growth, connection, and relief. To address these needs a Parents Night Out event was created with specific activities and environments for parents of children with disabilities. The purpose of the event is to include an adapted environment and learning atmosphere based on the specific needs of the children and families to promote social, as well as, community participation and inclusion in spirituality. These events included adapted worship settings, flexible activities and one-on-one buddies to allow parents an evening to experience connection, relief, and spiritual development. Church staff were trained in the execution of the event and given examples and resources to create future events. Additional data is needed to draw conclusions regarding the statistical significance and community impact respite nights at churches can have for individuals with disabilities and their families. PARTICIPATION IN SPIRITUALITY 4 Literature Review Participation Barriers Caregivers and parents of children who have disabilities face constant challenges. Kirby, White, and Baranek (2015) discovered children with ASD who have hyperresponsive and hyporesponsive behaviors added increased strain on caregivers. A research study focused on a community outing for children with disabilities and their families identified finances, excessive sensory stimuli in the environment and negative feelings towards childrens unpredictable behaviors as main reasons why families are discouraged to participate in community events (Lussenhop et al., 2016). Multiple researchers indicated families with children who have disabilities face participation barriers (Schaaf et al., 2015) and limitations compared to typically developing children and their families resulting in decreased quality of life (Askari et al., 2015; Silverman & Tyszka, 2017; Little et al., 2015). Askari et al. (2015), identified restrictions impacting community participation as both physical and social restrictions. These restrictions can prevent children with sensory processing needs and autism spectrum disorder (ASD) from interacting within the community resulting in impacts on their development and well-being (Silverman & Tyska, 2017). Additionally, researchers suggested there was a connection between participation and well-being for families of children with ASD and sensory processing differences (Silverman & Tyszka, 2017). Participation in Spiritual Communities Families who were accepted into the church community found increased quality of life and enhanced spiritual lives (Poston & Turnbull, 2004; Speraw, 2006). Engaging in a church community provided connectedness, personal and spiritual growth, and an opportunity to serve PARTICIPATION IN SPIRITUALITY 5 others (Maley, Pagana, Velenger, & Humbert, 2016). These researchers emphasized the importance of providing a spiritual connection for children with disabilities and their families to enhance their overall quality of life. While research shows spirituality can be a solution to the caregiver strain, research also identified potential barriers to participation in spiritual communities (Speraw, 2006; Poston & Turnbull, 2004). Speraw (2006), researched spiritual experiences for caregivers who have children with disabilities and discovered members of faith communities either devalue or overlook the spiritual lives of individuals with disabilities resulting in a crisis of faith. Researchers found families felt their children with disabilities were not accepted and the churches did not have the supports in place to care for their child making them reluctant to attend (Poston & Turnbull, 2004). Environmental Impacts Silverman & Tyszka (2017), studied families with children who have disabilities who had exclusive access to a community event. The families determined a smaller population of people present decreased sensory stimuli resulting in an important part of their success when in the community (Silverman & Tyszka, 2017). Researchers concluded with the need to reduce barriers and adapt the sensory environment. This can lead to greater participation among children with disabilities and their families (Silverman & Tyszka, 2017). Creating an adaptive sensory environment during a community event that is specific to families with children who have disabilities can enhance their participation leading to overall quality of life. Model and Frame of Reference The Kawa Model will guide the program development through interconnectedness of the environment, and persons in the frame of life experiences and focuses on enabling the life flow PARTICIPATION IN SPIRITUALITY 6 by enhancing harmony (Iwama, Thomson, & MacDonald, 2009). During my program development, I will be promoting spiritual participation for children with disabilities and their families which will positively impact their life through improved social and community participation. Gutterman (1990) states spirituality and occupational therapy interconnect when we define spirit as the life force within us that tells us who we really are. The Kawa model emphasizes social constructivism which is created through groups of people and connectedness includes nature, others, and deity (Iwama, Thomson, & MacDonald, 2009). Utilizing this model will allow me to build rapport with families to better understand their needs (Janus, 2017). Through the program at Emmanuel Church an emphasis will be placed on social participation and community engagement, while building stronger emotional connections with God. When an individuals life is flowing smoothly they make spaces to move, live, reconnect with loved ones, and maximize lifes flow (Lim & Iwama, 2011). The sensory integration frame of reference (SI FOR) is focused on organizing sensory information in the CNS and its use in guiding the adaptive motor behaviors that make up ones occupational performance (Cole & Tufano, 2008). Many children with disabilities have a difficult time organizing sensory information, which can result in them acting out with unwanted behaviors. Utilizing sensory integration allows the children to act or respond to situations in a purposeful manner (Cole & Tufano, 2008). Common signs and symptoms that may present with sensory processing disorder are hyperactivity or distractibility, behavior problems, speech and language delays, muscle tone and coordination problems, and learning difficulties (Cole & Tufano, 2008). Incorporating the SI FOR into the program development allows the children with disabilities and their families to participate in an adapted and controlled environment. Limiting the overload of sensory experiences in the room and providing adaptations as needed will PARTICIPATION IN SPIRITUALITY 7 increase a childs participation resulting in the family being able to attend and participate for an extended period of time. Program Development By adapting the context and environment the children will have increased opportunities to grow and learn about their own spirituality and relationship with God, thus limiting hindering factors and barriers. Spirituality is defined as a client factor within the Occupational Therapy Practice Framework: Domain and Process (American Journal of Occupational Therapy [AOTA], 2014). AOTA (2014), states spirituality is within the client and impacts their performance within their daily occupations. The families that were welcomed in the church community reported feeling sustaining support and strengthened faith (Speraw, 2006). Adapting the equipment within the environment will also limit physical and behavioral barriers related to sensory processing disorder. The families will be able to engage socially with other community members and within their own family dynamic. The purpose of the event is to include an adapted environment and learning atmosphere based on the specific needs of the children and families to promote social, as well as, community participation and inclusion in spirituality. Needs Assessment Screening and Evaluation Needs assessments are important to identify problems and gaps in care and assist populations with ways to problem solve (Bonnel & Smith, 2018). Bonnel & Smith (2018), recommend completing a needs assessment through a variety of approaches including, a literature review, descriptive assessments, and SWOT analyses. PARTICIPATION IN SPIRITUALITY 8 Literature Review The literature review revealed a pressing need for families to have community support in order to have the quality of life generated from participation in spirituality. Interconnection with others is important in experiencing spiritual wellness (Tan, Wilson, Olver, Barton, 2011). Additionally, positive family experiences enhance the well-being of individuals within the family (Silverman & Tyszka, 2017). However, there are barriers preventing participation in and provision of community programs including: cost, level of sensory stimuli in the environment, and negative attitudes toward the unpredictability of their childs behavior (Langa et al., 2013; Lussenhop et al., 2016). Community-based programs have value for families and can positively affect participation and well-being (Silverman & Tyszka, 2017). These findings conclude that adapted community events utilizing a reduced pragmatic barrier and modified sensory environment increase participation (Silverman & Tyszka, 2017). SWOT Analysis Through informal interviews with staff and family members within the congregation a SWOT Analysis was compiled. Table 1 in the Appendix details the conclusions of this analysis. Survey A pre and post survey (Appendix Figure 1) will be emailed to participants registering for the community event. This survey will utilize a Likert scale to assess how registered participants currently feel in areas of social participation, community participation, and inclusion in spirituality. After the event, the same survey will be emailed again. Results will be compared to assess the ability of this event to meet the needs of parents and caregivers. PARTICIPATION IN SPIRITUALITY 9 Community setting vs. school-based OT Researchers have discovered spirituality lends meaning and purpose to life and increases levels of motivation (Howard & Howard, 1997). Participants in a study by Poston & Turnbull (2004) indicated they relied on God to help remove barriers and to show them the direction they should take. This type of meaning and motivation enhances the overall family quality of life. In one study researchers define family quality of life as, conditions where the familys needs are met, family members enjoy their life together as a family, and family members have the chance to do things that are important to them (Poston and colleges, 2003). While school-based OT attempts to include parents/caregivers through the individual education plan meetings, and attempts to improve quality of life by reducing barriers to participation with others, they are limited in their ability to support a cohesive family unit. School-based therapists reported far less communication with parents and that it was very rare to communicate with parents despite the attempts to connect (Fingerhut, et al. 2013). The goal of this program is to provide adapted environments for individuals with disabilities to enhance their spiritual, community, and social participation. Strength from faith enables family members to meet the challenges they face in everyday life (Poston & Turnbull, 2004). Implementation Phase Program Development Completion of the needs assessment revealed parent participants of Emmanuel Church desired a time for connection with other families who have a child with disabilities, time where their children have exposure to positive role models, and time to experience caregiver relief. Silverman & Tyzka (2017), determined community-based activities are valuable and can positively impact participation and well-being. A community respite program was developed for PARTICIPATION IN SPIRITUALITY 10 families who attend Emmanuel Church who have a child with disabilities. The respite program at Emmanuel is called Parents Night Out. Prior to attending the program, parents completed a presurvey which can be reviewed in Table 2. Table 2 Emmanuel Church Parents Pretest Survey Very Likely Likely Neutral Unlikely How likely are you to attend community events as a family? 2 2 How likely is it that you regularly (2-3 x/week) interact with friends and family members? 3 2 How likely is it that your child regularly (2-3 x/week) interact with friends and family members? 3 2 How likely is it that you feel fully engaged in the church events you attend? 2 3 How likely is it that you experience spiritual growth when interacting in church events? 2 3 How likely is it that you feel connections to other church members when interacting in church events? 1 3 How likely is it that you feel connection and support from friends and family in your life? 2 3 How likely are you to opt out of events at Emmanuel due to excessive sensory stimuli in the environment? 1 Very Unlikely 1 1 1 2 1 PARTICIPATION IN SPIRITUALITY 11 How likely is it that you attend a community event with environmental adaptations provided for your childs needs? 1 2 1 How likely is it that you feel comfortable leaving your child in someone elses care? 1 2 1 1 1 The event began with an introduction explaining the importance of occupational therapy and the many roles in which occupational therapists are involved in community settings. After the introduction, a time of spiritual worship took place. The worship time allowed parents an opportunity to experience live music in a supported setting. One example of the support provided was education of the musicians on adapting their music to be conscientious of noise level throughout the worship session. Volunteers (ie. buddies) were assigned to families to help regulate and entertain the child if they became distracted or restless. After the worship session, parents were able to leave. Many parents opted to use this time to have a date with their spouse, one-on-one dates with their other children, or some participated in self-care activities including getting a haircut or shopping. The music, activities, and movie were given a water theme to match the summer season. After parents left the children engaged in three activities which incorporated gross, fine and sensory motor components. The children ended the night enjoying a movie located in the adapted environment. The adapted environment provided adaptations to seating, lighting, and noise levels. Continuing Education Throughout the last year I have completed a sensory integration certification from the University of Southern California. The certification process required completion of five courses PARTICIPATION IN SPIRITUALITY 12 to receive the certifications. The courses included: Theoretical Foundations of Sensory Integration, Sensory Integration Evaluation and Clinical Reasoning, Sensory Integration Treatment, Sensory Integration for Individuals on the Autism Spectrum, and Sensory Integration in School-Based Settings. Completion of these courses required listening to recorded lectures with corresponding PowerPoint slides, fulfilling assignments, and passing a final exam after each course. The courses emphasized the importance of client-centered care and the importance of the child facilitating the level of sensory integration they are receiving from the environmental stimuli. Throughout the courses, I learned a variety of interventions targeting specific sensory systems and ideas on implementation of environmental adaptations for increased participation for individuals which greatly helped me in the development of my Parents Night Out event at Emmanuel Church. Leadership Beginning a new program requires many aspects of leadership. The leadership skill most influential in the success of my program included pro-active communication with staff, participants and volunteers. Specific communication took place regarding the timeline I developed for the event, which was essential for the implementation phase to run smoothly. This began with early contact with parents to request registration and information about their children. Registration allowed each buddy to have the necessary supplies and education to maximize participation for the children attending. Additionally, all special needs, allergies, and medications were communicated to the medical staff and the one-on-one buddies prior to the event allowing for a safe environment. Throughout the process organization was key to a successful event. Having a schedule clearly and concisely laid out for everyone limited confusion. Creating and implementing the PARTICIPATION IN SPIRITUALITY 13 registration process was essential and required follow up with families regarding registration information. It was also important to have documentation from families regarding medication and medical treatment for their child in a safe, but accessible place. Coordinating volunteers and discussing expectations and availability with those serving as buddies, the facilities team, activity leaders, medical staff, and worship team took a great deal of time, effort and communication. Staff Development The needs of attendees and families are not uniform, and a safe, adaptable environment is necessary for participation. The event necessitated staff education to promote an engaging, safe, and sustainable program. Prior to, and throughout the event, communication occurred with the staff regarding the importance of planning and implementing activities that can be easily graded for a variety of ages and abilities. During the event, I served as a lead collaborator to use my occupational therapy education and further training in sensory integration to assist activity leaders and buddies to make the activities adaptable for each participant. One way this was achieved was by using the just-right challenge to grade the activities up or down based on the childs functional capabilities. A specific example includes one of the activities where the child had to throw a ball through a target, which consisted of multiple hoops taped together. The children who had greater functional abilities were able to challenge themselves by closing their eyes, throwing it one handed, throwing the ball from a greater distance or selecting their target hoop prior to releasing the throw. Children who had a difficult time completing the activity would throw the ball with two hands for greater strength or throw the ball through the hoop that was at a lower height. In addition to educating the staff on the importance of flexible activities and adapted environments, it was important that I advocate for this event. My advocacy included: educating PARTICIPATION IN SPIRITUALITY 14 staff on the common barriers to participation in community events, requesting budget allocations, adapting the worship session, discussing the importance of spiritual growth as a family, implementing environmental adaptations, and creating a contact list of volunteers. Discontinuation and Outcomes Researchers indicated families with children who have disabilities encounter participation barriers (Schaaf et al., 2015) and limitations compared to typically developing children and their families, which resulted in decreased quality of life (Askari et al., 2015; Silverman & Tyszka, 2017; Little et al., 2015). An important part of the doctoral capstone experience was program development through adapting the environment to enable caregivers to feel their children were safe and included, consequently allowing parents the opportunity to experience caregiver relief and participate in community events. The results provided a small sample set, however, parents did report higher levels of comfortability leaving their children in an environment with adaptations. One parent also commented, they felt the opportunity to meet, observe, and interact with their childs one-on-one buddy during the worship session put them more at ease when leaving their children for an extended period of time. Researchers indicated families desire a smaller population of people present to decrease the level of sensory stimuli resulting in enhanced participation when in the community and have concluded there is a need to reduce barriers and adapt the sensory environment (Silverman & Tyszka, 2017). This results in higher levels of participation among children with disabilities and their families (Silverman & Tyszka, 2017). The results of the post survey, as shown in Table 3, show parents became more likely to attend a community event of smaller size in an adapted environment. One respondent indicated they were very unlikely to participate in community events, and in the post-survey this response changed to likely. Additional research is needed to PARTICIPATION IN SPIRITUALITY 15 determine specific factors impacting participation and spiritual growth and connectedness within the church. Spiritual development is an important factor relating to overall quality of life for a family unit. Future studies would benefit from a larger sample size and longer time period of data collection. Table 3 Pre and Post Survey Comparison n=2 Pre Questions Very Likel y How likely are you to attend community events as a family? How likely is it that you regularly (2-3 x/week) interact with friends and family members? How likely is it that your child regularly (2-3 x/ week) interact with friends and family members? How likely is it that you feel fully engaged in the church events you attend? Post Likel Neutra y 1 l Unlikely 1 Very Very Likely Unlikel Likely y 1 1 1 1 2 1 1 2 2 1 1 Neutr Unlikel al y Very Unlikel y PARTICIPATION IN SPIRITUALITY How likely is it that you experience spiritual growth when interacting in church events? 1 16 1 1 How likely is it that you feel connections to other church members when interacting in church events? 2 1 How likely is it that you feel connection and support from friends and family in your life? 2 How likely are you to opt out of events at Emmanuel due to excessive sensory stimuli in the environment? 1 How likely is it that you attend a community event with environmental adaptations provided for your childs needs? 1 How likely is it that you feel comfortable 1 1 1 1 1 1 1 1 1 1 1 1 1 1 PARTICIPATION IN SPIRITUALITY 17 leaving your child in someone elses care? While the pre-survey had six completed results for all participants, the post-survey, despite multiple follow up attempts, resulted in two responses. The summary table includes the results of the two respondents who completed both pre and post survey. While the sample size is small, results show respondents on average were more likely to feel comfortable leaving their child in the care of a volunteer after the event. Additionally, respondents stated they are more likely to attend events with environmental adaptations. Limitations to the results of the program implementation include the sample size, and the possibility of time between surveys to allow outside factors to alter the participants response. Future programs should include more participants and a longer period of time to control variables, as the results of this initial program implementation does not provide conclusive evidence for the importance, or unimportance, of continued, church-sponsored respite events. Response to Societys Needs During my doctoral capstone experience, I had the opportunity to fulfill the requirements for a sensory integration certificate. This continuing education opportunity supplied important knowledge for my program implementation and professional development. I successfully passed five sensory integration courses to receive this certificate. Sensory integration is defined as the neurological process that organizes sensations from ones body and from the environment and makes it possible to use the body effectively in the environment (Ayres, 9172). Children who have difficulty with sensory integration may experience challenges with childhood occupations including play, chores, self-care, school participation (Ayres, 1971). Children may also experience delayed development in fine and gross PARTICIPATION IN SPIRITUALITY 18 motor skills, emotional regulation, and appropriate behavior (Ayres, 1971). Approximately 1 in every 68 children have autism spectrum disorder (2% of the population), which is typically accompanied by sensory integration difficulties (CDC, 2014). Over half the individuals attending the Parents Night Out event had sensory processing difficulties. Therefore, as part of this certification I chose to complete a specialized course in the application of sensory integration into school-based settings and sensory integration for individuals on the autism spectrum. These courses allowed me to provide environmental adaptations in a structured environment that was safe, and included enjoyable activities for participants engaging in the Parents Night Out events. In addition to the education integrated into my program development, I have also received education impacting my future contributions to the field of Occupational Therapy. My sensory certification gives me key insight into better understanding performance skills and patterns that impact individuals daily occupations due to sensory integration difficulties. This insight will prove useful in future employment opportunities as sensory integration is rapidly developing as a unique and essential part of OT treatment in many settings. Program Sustainability This program has proved to be sustainable as all necessary resources have been provided to the church to continue implementing for another 12 months. Throughout this doctoral capstone experience staff at Emmanuel received education on the importance of Occupational Therapy and adapted environments for children with disabilities. This input was delivered through formal and informal discussions, observation, resources, and handouts. The staff has shown priority for these types of inclusive environments and have already started the process of setting a date for the next Parents Night Out event. PARTICIPATION IN SPIRITUALITY 19 Prior to the event, I had time to prepare the volunteers and emphasize to them the importance of social participation, community involvement, and caregiver relief. During the program and prior to the worship session there was a brief time for me to share the importance of Occupational Therapy and educate attendees on the desire for this program. In addition to the implementation of the first event as a model for future events, resources were provided to the staff to allow for continued development. Themed Parents Night Out events including one fine motor, gross motor, and sensory activity have been compiled in an electronic format and in a physical binder. The full schedule of each evening including: theme, a memory verse with motions, worship set list, activities, and instructions for the activities, have been delivered to the staff for simple implementation. Additionally, a contact list for volunteers and a sample cost of the event provides the staff with the education and resources needed to carry out future community events like this one in a safe and inclusive environment. Overall Learning The most pivotal area of growth in this Doctoral Capstone Experience has been in leadership. The opportunity to pioneer a program in an environment where my knowledge set is unique and highly valued strengthened my confidence and provided an unparalleled opportunity for growth. To meet the program goals successfully I had to coordinate registration for the families coming to the event and assemble a team of volunteers. I had over 18 volunteers attend the event including worship leaders, medical staff, security and facilities staff, activity leaders and one-on-one buddies. The growth I experienced was not entirely due to the success and ease of this event. There were roadblocks and setbacks such as volunteer cancellations within 24 hours of the event. The event itself is dependent on the ratio of volunteers to attendees this provided a stressful PARTICIPATION IN SPIRITUALITY 20 challenge that I was able to overcome. Additionally, I had to brainstorm creative ways to stay within the budget and coordinate budget allocations with staff members. I now realize working within constraints and advocating for occupational therapy will be key to continued professional success. Pro-active communication with staff, participants and volunteers regarding the timeline I developed for this event allowed the evening to run smoothly. The pre-registration was beneficial for budgeting and providing activity leaders with the necessary supplies for each child attending. Additionally, all special needs, allergies, and medications were communicated to the medical staff and the one-on-one buddies prior to the event, creating a safe environment for the participants. The pressing need for providing a safe and adapted environment in spiritual settings was an eye-opening aspect of the literature review and a unique challenge in the implementation phase. Because the needs of attendees and families are not uniform, program development necessitates flexibility. Planning activities that can be easily graded for a variety of ages and abilities required forethought. During the event, I was able to collaborate with activity leaders and buddies to appropriately adapt activities when challenges were presented. This required clinical reasoning and fast-paced problem-solving. Reflecting on the event and the leadership skills required for the program development and implementation of the event, the highlighted areas of importance were organization and effective communication skills. Collaborating on the budget, facilities, environmental adaptations, and coordinating volunteers was an influential experience. In each of these areas, I had an opportunity to see the impact and importance occupational therapy plays in community members quality of life. PARTICIPATION IN SPIRITUALITY 21 References American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process. American Journal of Occupational Therapy, pp. S1S48. Askari, S., Anaby, D., Bergthorson, M., Maijnemer, A., Elsabbagh, M., & Zwaigenbaum, L. (2015). Participation of children and youth with autism spectrum disorder: A scoping review. Review Journal of Autism and Developmental Disorders, 2, 103114. Ayres, A.J. (1971). Characteristics of types of sensory integrative dysfunction. American Journal of Occupational Therapy, 25 (7), 329-334. Ayres, A.J. (1972b). Sensory integration and learning disorders. Los Angeles: Western Psychological Services. Centers for Disease Control and Prevention (CDC). (2014). CDC estimates 1 in 68 children has been identified with autism spectrum disorder. CDC Newsroom Releases. Retrieved from: https://www.cdc.gov/media/releases/2014/p0327-autism- spectrumdisorder.html Cole, M., & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Fingerhut, P., Piro, J., Sutton, A., Campbell, R., Lewis, C., Lawji, D., & Martinez, N. (2013). Family-centered principles implemented in home-based, clinic-based, and school-based pediatric settings. American Journal of Occupational Therapy, 67, 228235. Gutterman, L. (1990). A day treatment program for persons with AIDS. American Journal of Occupational Therapy, 44, 234237. PARTICIPATION IN SPIRITUALITY 22 Howard, B. S., & Howard, J. R. (1997). Occupation as spiritual activity. The American Journal of Occupational Therapy, 51(3), 181185. Iwama, M., Thomson, N., & MacDonald, R. (2009). The Kawa model: The power of culturally responsive occupational therapy. Disability and Rehabilitation, 31(14), 11251135. Janus, E. (2017). The Kawa Model in occupational therapy and its application in the rehabilitation of mentally challenged patient. Advances in Rehabilitation, 31(1), 2736. Kirby, A. V., White, T. J., & Baranek, G. T. (2015). Caregiver strain and sensory features in children with autism spectrum disorder and other developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 120, 3245. Langa, L. A., Monaco, P., Subramaniam, M., Jaeger, P., Shanahan, K., & Ziebarth, B. (2013). Improving the museum experiences of children with autism spectrum disorders and their families: An exploratory examination of their motivations and needs using web-based resources to meet them. Curator: The Museum Journal, 56, 323335. Lim, H., & Iwama, M. K. (2011). Emerging models- An Asian perspective: The Kawa (River) Model. Foundations for Practice in Occupational Therapy, 117135. Little, L. M., Ausderau, K., Sideris, J., & Baranek, G. T. (2015). Activity participation and sensory features among children with autism spectrum disorders. Journal. Journal of Autism and Developmental Disorders, 45, 29812990. Lussenhop, A., Mesiti, L. A., Cohn, E. S., Orsmond, G. I., Goss, J., Reich, C., LindgrenStreicher, A. (2016). Social participation of families with children with autism spectrum disorder in a science museum. Museums & Social Issues, 11(2), 122137. PARTICIPATION IN SPIRITUALITY 23 Maley, C. M., Pagana, N. K., Velenger, C. A., & Humbert, T. K. (2016). Dealing with major life events and transitions: A systematic literature review on and occupational analysis of spirituality. American Journal of Occupational Therapy, 70(4). Poston, D. J., & Turnbull, A. P. (2004). Role of spirituality and religion in family quality of life for families of children with disabilities. Education and Training in Developmental Disabilities, 95108. Schaaf, R. C., Cohn, E. S., Burke, J., Dumont, R., Miller, A., & Mailloux, Z. (2015). Linking sensory factors to participation: Establishing intervention goals with parents for children with autism spectrum disorder. American Journal of Occupational Therapy, 69. Silverman, F., & Tyszka, A. C. (n.d.). Supporting participation for children with sensory processing needs and their families: community-based action research. American Journal of Occupational Therapy, 71(4). Speraw, S. (2006). Spiritual experiences of parents and caregivers who have children with disabilities or special needs. Issues in Mental Health Nursing, 27(2), 213230. Tan, H. M., Wilson, A., Olver, I., & Barton, C. (2011). The experience of palliative patients and their families of a family meeting utilized as an instrument for spiritual and psychosocial care: A qualitative study. BMC Palliative Care, 10(1), 7. PARTICIPATION IN SPIRITUALITY 24 Appendices Table 1. SWOT Analysis Strengths Growth of Supportive Services Ministry Support room for intensive needs Partnering with parents Support at all three campuses Open to parents concerns Attentive to individuals needs Educating others on childs needs Weaknesses Support group for parents and siblings Mentors for children Support room open infrequently (Not open at Moms time out, worship night, small group nights) Opportunities Better understanding of Autism Connection with others that live daily life with a child with disabilities Best environment for each individual Adaptations in typical environment through small groups and buddies Partnering with parents to provide a space for connection Volunteers at smaller site locations Family connections Respite events (need and desire) Great community partnerships and staff members with personal experiences speaking into the program Room for growth to allow more families to feel comfortable leaving their children in the support room Threats Without a mentor program through the church children are receiving input from individuals outside of church Budgeting Other churches are providing respite events Sustainability of program PARTICIPATION IN SPIRITUALITY Question 1: How likely are you to attend community events? 25 Very Unlikely Question 2: How likely is it that you regularly interact with friends and family members? Very Unlikely Question 3: How likely is it that your child regularly interacts with friends or family members? Very Unlikely Question 4: How likely is it that you feel fully engaged in the church events you attend? Very Unlikely Question 5: How likely is it that you experience spiritual growth when interacting in church events? Unlikely Unlikely Unlikely Unlikely Neutral Likely Very Likely Neutral Likely Very Likely Neutral Likely Very Likely Neutral Likely Very Likely PARTICIPATION IN SPIRITUALITY 26 Very Unlikely Question 6: How likely is it that you feel connections to church members or family members when interacting in church events? Very Unlikely Question 7: How likely is it that you feel connection and support from friends in your life? Very Unlikely Question 8: How likely are you to opt out of events at Emmanuel due to excessive sensory stimuli in the environment? Very Unlikely Question 9: How likely is it that you attend a community event with environmental adaptations provided for your childs needs? Very Unlikely Unlikely Unlikely Unlikely Unlikely Unlikely Neutral Likely Very Likely Neutral Likely Very Likely Neutral Likely Very Likely Neutral Likely Very Likely Neutral Likely Very Likely PARTICIPATION IN SPIRITUALITY Question 10: How likely is it that you feel comfortable leaving your child in someone elses care? 27 Very Unlikely Figure 1. Survey Questionnaire Unlikely Neutral Likely Very Likely  ...

... Promoting Humanness: Occupation-Based Programming and Advocacy in a State Psychiatric Hospital Kathryn D. Mehrlich 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, MS, OTD A Capstone Project Entitled Promoting Humanness: Occupation-Based Programming and Advocacy in a State Psychiatric Hospital 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 Kathryn D. Mehrlich 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 Abstract Problem: A need for increased promotion of humanness among people with mental health concerns is prevalent in both the medical and societal realms. Stigma surrounding mental illness from both health professionals and the greater outside community provides challenges to those living with mental illnesses. Program: Two programs were developed to address this problem: 1) An occupation-based program focused on volunteerism with social skill and self-care components was implemented on two youth units at a state psychiatric hospital and 2) A narrative-medicine based anti-stigma campaign including a sustainable resource to promote empathy was created and presented to staff at a state psychiatric hospital. Both programs were created to promote the humanness of each patient at the site, increasing their quality of life through meaningful occupation and empathetic staff. Outcomes: Youth participants learned and implemented social skills and self-care strategies, attempted new leisure skills, and completed volunteer projects for local community organizations allowing them to feel more connected to their community. Participants noted a desire to continue at least one leisure pursuit introduced in group as well as volunteer again with at least one community organization in the future. Following the anti-stigma campaign presentation to hospital staff, there was an average of a 0.45 point change on a 10 point Likert scale regarding ability to understand and empathize with patients. Additionally, staff identified an average of 1.35 mindsets/biases they wanted to improve and created an action plan with an average of 2.58 ways they planned to work to increase their empathy. Background and Literature Review Participation in meaningful occupation is critical to each unique individual so that they may lead a life of value. The Value in Meaningful Occupation (VaIMO) theory explains that a meaningful life full of value is deeply intertwined with the participation in meaningful occupation on the micro, meso, and macro levels (Persson, Erlandsson, Eklund, & Iwarsson, 2001). In this theory, micro level occupation includes actions and operations which, combined, allow us to participate in a meaningful occupation. The meso level occupation includes the meaningful occupation itself as well as daily patterns of occupation which give life its meaning. Macro level occupation is then viewed as an entire life made up by ones meaningful occupations (Persson et al., 2001). In essence, the micro facilitates the meso which creates the macro. In the VaIMO theory, one sees actions and operations, even something as small as the ability to attend to craft directions in a school setting, can ultimately impact ones entire life (Persson et al., 2001). By addressing occupations and, within them, client factors and performance skills necessary for participation, an entire lifetime of meaningful occupation and value can be addressed. Occupational therapy interventions have the potential to improve occupational performance and wellbeing in people with a wide range of mental health diagnoses (Ikiugu, Nissen, Bellar, Maassen, & Van Peursem, 2017). In fact, Lipskaya-Velikovsky, Kotler, & Krupa (2016) explicitly state that, participation in meaningful occupations is an important component of recovery in mental illness, and recovery is a focus of mental health service delivery internationally (pg. 4). This heavily supports the incorporation of occupation-based interventions and activities into the daily lives of people in an inpatient mental health setting as researchers in this study suggest occupational engagement and participation aid in recovery, a goal of inpatient mental health settings around the world (Lipskaya-Velikovsky, et al., 2016). Specifically, researchers found that there is strong evidence to support the use of ADL, IADL, and social participation interventions as well as moderate evidence to support the use of leisure, and rest/sleep interventions among mental health service consumers (DAmico, Jaffe, & Gardner, 2018). In addition, researchers have found evidence to support the use of Tier I (universal), II (targeted), and III (intensive) occupation and activity based interventions with youth who have a mental illness, are aggressive, have been rejected, have learning disabilities, or are generally at risk in order to improve social skills, self-management, and coping mechanisms (Arbesman, Bazyk, & Nochajski, 2013). Furthermore, researchers have found that increased engagement in structured activities is inversely related to incidence of depression in youth with disabilities (Berg, Medrano, Acharya, Lynch, & Msall, 2018) suggesting the mental health of vulnerable youth benefits when meaningful occupation is more central to their lives. This concept is supported by Larivire, et al. (2015), who also found participation in meaningful occupations as well as being a part of healthy relationships were critical factors in mental health recovery. This is crucial for occupational therapy practitioners to understand in order for programs to be made that encourage engagement in meaningful occupation to address the mental health of the youth populations they serve. Patient intervention, however, is not the only skill-set occupational therapy practitioners have which can address the betterment of the lives of people in inpatient psychiatric facilities. Occupational therapists can also address stigma and biases surrounding care of those with mental illnesses through a holistic understanding of care. Stigma related to mental illness can decrease a persons likelihood to participate in treatment, leading to decreased self-esteem and decreased social opportunities (Corrigan, 2004). This means stigma can directly impact a persons ability to participate in meaningful occupations. While it is likely many staff members working in this setting have a passion for caring for those with mental illnesses, researchers have found that, at times, professionals working in health-care, when compared to those in the general public, report more negative feelings towards people with mental illness (Thornicroft, et al., 2016). Elaborating on this finding, researchers also found 119 patients from 16 acute psychiatric units felt the nursing staff they interacted with on an almost constant basis were unfriendly and did not understand or attempt to empathize with them during their time admitted, ultimately leading to feelings of being undervalued (Stewart, Burrow, Duckworth, Dhillon, Fife, Kelly, ... & Wright, S. 2015). The staff members at these facilities interact with people working through recovery on a daily basis. In order to positively affect the quality of life and wellbeing of patients in psychiatric settings most fully, it is crucial to address any negative or incorrect stereotypes, stigmas, biases, or general indifference the people who interact with mental health consumers may have. This is where the holistic perspective of occupational therapists has a role to play. Researchers have found there is evidence of long term benefits, beyond four weeks postintervention, of mental health related anti-stigma interventions including decreasing attitudes of stigma towards the population in addition to general increase in knowledge regarding the antistigma topic (Mehta, et al., 2015). Ke, Lai, Sun, Yang, Wang, & Austin (2015) found even a onehour anti-stigma intervention related to mental illness decreased the participants stigma scale score by 23%, of which a 21% decrease was maintained at one month post-intervention. This provides hope for future anti-stigma interventions in increasing the quality of life of mental health consumers through the decrease in attitudes of stigma in the people they interact with on a daily basis. Screening and Evaluation In order to further inform program development, a screening and evaluation process took place through the form of a needs assessment. The evaluation process, consists of the formal and informal collection of useful information...from multiple sources (Christiansen & Matuska, 2011, pg. 46). Asher (2014) states there are several forms of data collection, or information sources, to consider when conducting an occupation-based assessment: history, survey, experiment, observation, questionnaire or interview, and measurement. The needs assessment completed was multifaceted and consisted of three of the methods listed previously: observation, interviews, and surveys. This screening and evaluation process was developed to allow for the programs created as a result of their finding to be as client-centered and holistic as possible. Observation. Part One of the needs assessment consisted of a week-long observation of youth programs, focusing on youth behavior and interactions among peers, current programming at the site, and staff interactions with youth. From this process, the observer received insight on several factors impacting the youth and their experience while hospitalized at the site. Youth relationships with peers were at times strained, likely due to the constant closeness in proximity they face on a daily basis. Currently, the largest of three total youth units has only five patients. These youth wake up together, go to school together, eat together, and spend their free time together. They experience the effects of one anothers behaviors throughout the day and, at times, have little patience for anothers struggles. Despite this, the youth, in other moments, show empathy and help one another through difficult situations. The current programming for the youth, lead largely by the recreational therapists outside of school hours, allows the patients time to play and interact with each other in a less stressful environment. The majority of youth at the site appear to enjoy the recreational therapy activities. When discussing their favorite parts of the current programming and groups, they noted things including, learning to control our actions, fun stuff, physical activity, and, activities with other [youth] units. Additionally, while many staff members have positive interactions with the youth at the site, several staff members words and actions sometimes reflected frustration, impatience, and exhaustion related to working with the youth, specifically during their moments of maladaptive behavior. While these feelings are understandable, it is unreasonable to speak and act in a way that reflects those, as these youth are hospitalized as a result of a mental illness or illnesses which often times lend themselves to these difficult behaviors. This was perhaps the most problematic observation. Interviews. Part Two of the needs assessment involved interviewing both youth patients and staff members. Both youth and staff member interviews were largely focused on gaining insight into programming desires. When asked what they wish they could learn more about while at the site, youth stated, staying out of peoples space, coping skills, art, and, how to stop self-harming. Their favorite things to do ranged from, being caring, to, sleeping, to exploring abandoned houses. When asked what group they would create at the site if given the chance, they explained they wanted, craft group, babysitting group, painting group, karate group, crocheting group, (Youth patients, personal communication, January 23, 2019; January 25, 2019) and more. Staff members were asked about what they felt the youths greatest daily need was throughout hospitalization. Responses included, consistency in their schedules...discipline and consequences, and knowing how to entertain themselves during downtime (F. Bunch & K. Yamasaki, personal communication, January 23, 2019). When asked what they feel holds the youth at the site back from living safely and appropriately in the community, staff responded by saying, Placement availability (group homes, step down facilities, or foster homes) and They dont get to have the typical things they would have outside of here- crayons, a variety of clothing...weve fallen into a habit of, if one person gets put on precautions and cant have it, then no one can have it. Additionally, when asked what they wish they could provide for the youth, staff members responded, Especially for the girls - but across the board - transitional care, even just getting to help them do daily things like brush their hair, and, Exercise, staying active, more activities during non-school days and weekends (F. Bunch & K. Yamasaki, personal communication, January 23, 2019). With the high and varying needs of the youth hospitalized at the site, in addition to the lack of time and resources of the staff, many needs go unmet, despite best efforts. In addition to interviews surrounding programming, an informal interview was conducted with a director of one of the site departments. In this interview, the director stated that some staff members have challenges related to stigmatizing the patients they work with due to the nature of the diagnoses that brought them to the hospital (E. Clampitt, personal communication, March 28, 2018; January 7, 2019). This was echoed in the aforementioned negative staff-to-patient interactions noted in the Observation section. Scholars have noted this is not an uncommon problem related to mental health conditions. Brown & Stroffel (2011) explain much of mental health stigma has to do with people placing blame on the person who has the diagnosis (Brown & Stroffel, 2011). This is very much in contrast to the majority of diagnoses one sees in healthcare. This stigma can be detrimental to the recovery process (Brown & Stroffel, 2011). In order to promote recovery, especially in a hospital setting, it must be a priority to eliminate the stigma surrounding mental health diagnoses. Occupation-based survey. Part Three of the needs assessment was a survey (see Appendix A) focused on better understanding the occupational challenges faced by the youth on site. A total of 16 staff members working with all three youth units responded to the survey. These staff members included nursing staff, support staff, psychologists, recreational therapists, social workers, and dieticians. Below are the results of the survey: Occupation Prevalence Significance Bathing/Showering 8 0 Grooming 11 3 Functional Mobility 2 0 Dressing 3 0 Safety and Emergency Maintenance 3 0 Health Management and Maintenance/Coping Skills 14 1 Rest/Coping Skills 13 6 Sleep Preparation 4 2 Sleep Participation 2 1 Formal Education Participation 11 2 Informal Education Participation 8 1 Volunteer Participation 10 2 Play/Leisure Exploration 9 1 Play/Leisure Participation 7 3 Social Participation (Community) 9 1 Social Participation (Family) 6 0 Social Participation (Peer/Friend) 13 10 Prevalence refers to the number of respondents who reported the occupation as a challenge for the youth with whom they work. Significance refers to the number of respondents who reported the occupation as a top concern in need of being addressed for the youth with whom they work. Respondents were able to mark three occupations as a top need. Note, not all respondents noted significance of need on their surveys. From the data above, the program developer discovered that the top occupational challenges related to prevalence of the challenge were: 1) Health Management and Maintenance including coping skills (88% of respondents), 2) Social participation - Peer/Friend (81%), 3) Grooming and Formal Education (69%), 4) Volunteer Participation (62%), and 5) Play/Leisure Exploration and Social Participation - Community (56%). Regarding significance of challenge, the rankings were as follows: 1) Social Participation - Peer/Friend (83% of respondents), 2) Rest including coping skills (50%), 3) Social Participation - Community and Grooming (25%), 4) Volunteer Participation, Sleep Preparation, and Formal Education Participation (17%), and 5) Health Management and Maintenance including coping skills, Sleep Participation, Informal Education participation, and Social Participation - Community (8%). Needs assessment analysis and relation to previous studies. The needs assessment yielded a wide range of meaningful results displaying a variety of challenges related to experiences of youth and mental health patients in general at this site. Challenges included difficulty performing meaningful occupations and interpersonal barriers regarding peer-to-peer as well as patient-to-staff interactions. These results are not surprising as social participation, community participation, ADLs, and coping and self-efficacy are all areas occupational therapists focus on when working in a pediatric setting whether with young children or adolescents (Case-Smith & OBrien, 2015). This is critical to understand when creating a program to address youths needs in any setting. In order to address these multifaceted challenges, it is important to create a group surrounding an occupation that involves many of these concepts. A volunteerism group can address peer and community social skills, leisure exploration, and healthy coping. Researchers, after coming to understand the many benefits of volunteerism, provided the Volunteering-inPlace (VIP) program to residents of an assisted living facility, all of whom had mild cognitive impairment (Klinedinst & Resnick, 2016). The participants of this program were found to have increased participation in the meaningful activity of volunteerism, greater feelings of purpose, and heightened quality of life as a result (Klinedinst & Resnick, 2016). These researchers also noted the challenge of finding volunteer opportunities for their population due to lack of transportation and health problems in addition to challenges related to finding projects that were meaningful to the participant while also allowing for success during the allotted volunteering time (Klinedinst & Resnick, 2016). This is important to note, as challenges related to health conditions and allowance for success should be taken into account in all groups focused on volunteerism. In another study, researchers working with youth and young adults with disabilities found participation in volunteerism increased their feelings of human capital related to coping and selfconfidence, social skills, and community involvement (Lindsay, 2016). In a study with a population of youth with mental health problems, a population not unlike the population of this needs assessment, researchers had similar findings including volunteerism as a way for youth to give back to their community and relate to those around them (Leavey, 2009). Additionally, volunteerism allowed these youth to take the focus off of their own challenges and look towards helping others (Leavey, 2009). In addition, it is noteworthy that mental health related stigma must be addressed in order to more effectively improve the quality of life of the patients at this site. Addressing these negative biases and stereotypes will allow for decreased stress and frustration as a result of greater understanding of the patients, their diagnoses, and their unique needs. This need for the addressing of stigma within mental health staff is supported by the literature. Thornicroft, et al. (2016) echoed this finding, explaining health-care professionals tend to report a more stigmatized view of the patients they work with than do the general public. Researchers also found these negative perspectives amongst health-care workers are often outwardly portrayed in negative emotions, such as unfriendliness and unempathetic tendencies, towards patients (Stewart, et al., 2015). Researchers studied the efficacy of an anti-stigma program presented to high school students. A one-hour mental health anti-stigma program was presented to high school students and found to have a positively affected their views in relation to those with mental health diagnoses even up to a month following the one-hour intervention (Ke, et al., 2015). This supports the need for such a program to be presented to the staff members at this site. Intervention Implementation Interventions implemented to improve quality of life for the patients at the state hospital included a volunteerism-based group for two of the three youth units and a narrative medicine inspired anti-stigma campaign which was disseminated to hospital staff members. In order to incorporate more of the concerns found from the needs assessment, social skill and self-care components were incorporated into the volunteerism group at the start of each session. Youth volunteer group. The youth volunteer group titled WE CARE (Working Everyday to Create And Relate to Everyone) took place over six weeks. Twelve sessions of one hour each were spread out over those six weeks with one session occurring on the Thursday of each week and another occurring on the Saturday of each week. Each week, the group was given a volunteer project to complete. Thursday groups started out with a social skill discussion. Saturday groups began with a self-care discussion. At the start of each group, the participants discussed how they used the previous sessions skill. The weeks followed the same basic schedule (see Appendix B). Volunteer projects included painting thank you cards for the hospital staff, making dog toys for a local shelter, and trying their hands at modified needlepoint projects to create decorations to be given to a local pay-what-you-can baby boutique. Social skills discussed included conversation skills, appropriate dressing, and resolving conflict. Self-care skills, called healthy habits in the group setting, included personal hygiene, sleep preparations/routines, and healthy coping. A full schedule can be found in Appendix C. Anti-stigma campaign. In order to address the stigma issues observed in the staff towards mental illness, a narrative medicine inspired anti-stigma campaign titled, Promoting Humanness was created. 17 patients in the hospital were asked the following three questions: 1) What is the best thing about you? 2) What do you wish people knew about you? and 3) What is your greatest hope? Patients participated in the interviews voluntarily following an explanation of the interviewees anonymity in addition to the purpose of the interviews and how they would be used. Interviewees expressed a desire to use their story to decrease the stigma surrounding mental illness. Interviewees responses were de-identified and placed into a presentation alongside artwork created by Toby Allen in his collection entitled Real Monsters (Allen, 2019). The presentation was then disseminated to staff members who participated in the presentation on a voluntary basis. Following the presentation, each participant was given a packet of anti-stigma resources including books and movies on mental health and illnesses, podcasts discussing mental illness, organizations supporting a decrease in stigma surrounding mental illness, and more. Participants were encouraged to fill out a personal anti-stigma plan outlining steps they would take to decrease their biases surrounding mental illness and fight stigma. See Appendix D for this resource and anti-stigma plan guide. Each staff participant was given a pre and posttest (Appendix G) in order to assess the immediate effectiveness of the antistigma campaign and resource. Leadership Due to the various mental health diagnoses represented in the volunteer group in addition to their behavior typical of youth, a directive approach to leadership was maintained throughout the six weeks. The group leader planned all group activities, prepared activities prior to the sessions start when necessary for safety reasons, and provided thorough verbal instructions, visual demonstrations, and feedback as appropriate. This leadership style allowed the group to remain on task and goal-focused despite symptoms and/or general temperament that interfered with attention, focus, comprehension, and overall ability to complete group discussions, activities, and projects. Towards the end of the group, leadership style was, at times, transitioned to a more facilitative style. While to group leader continued to provide group projects, some more advanced participants began assisting their peers with projects they understood well. The group leaders patience, even temperament, encouragement, and determination to empower participants and see them succeed were all key to creating and maintaining this group. These leadership skills were present at the start of the group, however developed, strengthened, and matured over the overall course of the group. Staff Development Both the program development and advocacy interventions address staff development. Firstly, the program development portion in the form of an occupation-based group for the youth allowed staff who assisted with the sessions and/or works with the youth daily to see the creation, implementation, and outcomes of an occupation based group. This allowed the staff to open their minds to new programming concepts which were not in the forefronts of their minds do to the absence of occupational therapy in their specific hospital. Additionally, this opened their eyes to the value of meaningful occupation as a form of therapy and mode to recovery in tandem with the rest of their skilled care. Additionally, the advocacy intervention, in the form of a narrative medicine based mental health anti-stigma campaign, promoted staff development in various critical ways. Firstly, the presentation of this campaign, in addition to the eventual use of resources given as a part of the campaign, was designed to increase empathy and understanding of the people they work with daily. Secondly, this campaign empowered them to create a personalized plan to decrease negative biases they may have, whether in their daily lives or which interfere with their work. Lastly, this program allowed staff to discuss the challenges of mental health stigma, specifically in their work, and collaborate with each other to increase the quality of life of those whom they work with on a daily basis through advocacy them. Discontinuation and Outcomes Continuous quality improvement. The concepts of continuous quality improvement (CQI) were incorporated into the program development for the youth volunteerism group primarily through verbal feedback. CQI began at the start of the development process via a thorough needs assessment completed to gain a more thorough understanding of the needs of the population being served. The needs assessment was completed by several professionals from a variety of disciplines in order to incorporate a multidisciplinary viewpoint in order to develop a program that met the needs of the patients as holistically as possible. Following the start of the youth volunteerism group, each session allowed for natural feedback in reference to progress towards group goals. For example, each session the group members would discuss how they were or were not were not able to implement the previous sessions social skill of the week or healthy habit of the week. After hearing this feedback, future sessions were adjusted based upon the participants demonstrated abilities to comprehend and implement concepts. Additionally, recreational therapists, the head of the rehabilitation department, and psychiatric technicians were also in attendance in various volunteer group sessions. This allowed for observation of how they assisted different participants based upon their extensive prior work with each individual patient. Verbal feedback was also always welcomed, and, on occasion, given by recreational therapists consistently involved in the group. Overall, this CQI process allowed for achievement of group goals (Appendix E) as well as a higher quality of group sessions which allowed participants to express themselves, learn new leisure skills, interact socially, learn positive coping skills, and gain a greater sense of connection to their community. Youth programming. The youth volunteer group took place over six weeks with sessions taking place twice a week for a total of 12 sessions. The group had 8 total participants with an average of 3 attending each session. Due to many participants struggling with transitions secondary to various psychiatric diagnoses, the discontinuation of group was discussed starting at the eighth session. This allowed for the participants to prepare mentally for the discontinuation of the group. Additionally, this allowed for participants who had inconsistent attendance to be aware of the groups impending conclusion. During the start of the final session, group members were shown pictures of their volunteer projects being delivered and/or used in their respective community settings. This allowed for them to see their contributions in a more concrete manner. This sparked discussion regarding what organizations they would like to continue helping or start volunteering with in the future upon discharge. All four goals outlined in Appendix E were met at the expected level (GAS 0). The majority of patients in attendance implemented four out of six total social skills discussed during the six Thursday groups. Additionally, the majority of patients in attendance implemented three out of five total healthy habits of the week focused on self-care. The implementation of these skills was demonstrated via each participant discussing a concrete example of when, in the previous days, they had used the skill(s). All group participants who had not been discharged prior to the completion of the group verbalized a desire to incorporate at least one leisure skill learned through the various volunteer projects into their daily lives in the future and/or upon discharge. Furthermore, all group participants who had not been discharged prior to the completion of the group verbalized a desire to work further via volunteering with at least one of the community organizations supported by the groups projects. Anti-stigma campaign. The mental health anti-stigma campaign was presented to staff on five separate occasions over the course of two weeks, with staff making additional requests for the presenter to return to the site for additional trainings and present at events outside the site. A total of 40 staff members of various professions attended the sessions. The presentation was narrative medicine focused incorporating de-identified patient interview responses to questions regarding their hopes and life goals, artwork which personalizes and de-stigmatizes several psychiatric diagnoses, and a resource including books, short stories, artwork, television shows, movies, and organizations which aim to accurately portray mental illnesses and decrease stigma surrounding various mental health concerns. Prior to the conclusion of the presentation, each participant was encouraged to fill out a personal anti-stigma plan outlining how they plan to continue their personal involvement in decreasing stigma. See Appendix D. Goal 1 outlined in Appendix F was met at the expected level of outcome (GAS 0), Goal 2 was met at a somewhat less than expected level of outcome (GAS -1), and Goal 3 was met at a somewhat more than expected level (GAS +1). This means that following attendance at the presentation, there was an average of a 0.45 point change on a 10 point Likert scale regarding ability to understand and empathize with patients. Additionally, staff in attendance identified an average of 1.35 mindsets/biases they wanted to improve and created an action plan with an average of 2.58 ways they planned to work to increase their empathy. Response to Societal Needs Community involvement. Participants were exposed to a variety of community organizations throughout the group. These organizations included a hospital, homeless shelter, animal shelter, adult day center, and a local pay-what-you-can baby boutique for mothers lacking resources. These organizations were all local, allowing for participants to gain a stronger sense of connection to their community. Volunteerism generally has been found to increase sense of community connection (Lindsay, 2016; Leavey, 2009). Additionally, this community involvement allows participants to focus on others rather than themselves (Leavey, 2009). These concepts were brought up throughout the previously discussed needs assessment. Several staff members from a variety of disciplines noted greater community participation would benefit the youth at this site. By incorporating regular discussion and service related to outside community organizations, that mission was accomplished. Positive Coping. Regardless of mental health status, every individual needs coping skills in order to handle lifes stresses and struggles. It is especially important for these coping skills to be positive, as opposed to maladaptive behaviors such as using drugs, drinking alcohol, selfharming, or problematic internet use (Lee, Chung, Song, Lee, Kim, Shin,...Kim, 2018). Often times, these maladaptive coping mechanisms are seen in people admitted to psychiatric hospitals (Lee, et al., 2018; Hare, 2017). It is especially important to foster positive coping skills for youth in this setting. Volunteerism has been shown to act as a positive way to cope with various life challenges (Lindsay, 2016). This concept was discussed intermittently throughout the group, and participants were receptive to the concepts. One participant who was often quiet during session discussion spontaneously discussed wanting to help organizations such as homeless shelters prior to the group discussing a homeless shelter as one of the groups community partners. Decreasing stigma. There is a societal need for a decrease in stigma regarding mental illness and those who live with mental health conditions. This stigma hurts both the people who are being stigmatized as well as those who hold these hurtful thoughts. Most clearly, people who are stigmatized are often treated as lesser, looked down on, and not given as many opportunities. Additionally, society, who drives these negative thoughts, in turn misses out on bright, innovative, fun, loving, passionate people and their unique and necessary ideas. Researchers have found that even, and especially, hospital staff holds stigma towards people living with mental illness (Thornicroft, et al., 2016). This can, and does, affect their medical care and quality of life. In addition, stigma can actually decrease a person's willingness to seek help for their condition in the first place (Corrigan, 2004), causing a potential decrease in safety of the person with the mental illness in addition to those around them. The creation and dissemination of an anti-stigma campaign regarding mental illness addressed this societal need within the hospital setting. The anti-stigma campaign, which can be disseminated continuously after the completion of the initial presentation, consists of a presentation and a resource. This program is sustainable in two ways: 1) The presentation and resources will be given to the site to disseminate as they see fit to staff throughout the future and 2) The resource given to each participant allows them to continue increasing their understanding and empathy even after the one hour presentation. Overall Learning Communication with patients. Communication with patients was critical throughout this process. This process began prior to the initial needs assessment through observation of and participation in various groups in which the youth were already regularly participating. This communication allowed for the group leader to build rapport and implement therapeutic use of self prior to the initiation of the volunteerism group and anti-stigma campaign interviews. This process continued more formally in the form of a needs assessment which involved interviews with patients. This communication allowed for the group developer to get a better understanding of the goals and desires of the potential participants as well as helped the future participants feel more involved in the planning process. A sense of ownership in the groups concepts fostered a stronger desire to attend and participate in groups. Communication with participants continued on throughout the group and following its discontinuation due to a therapeutic relationship having been formed and grown. Additionally, further patient communication was sought out for the creation of the narrative medicine based anti-stigma campaign. Patients were given the opportunity to share some of their story, hopes, and goals with staff in a non-threatening manner in the form of deidentified interview responses. This communication was also enhanced by therapeutic use of self. Participants were generally, though not exclusively, more inclined to share details of their lives with the interviewer when they had encountered the interviewer in previous, less formal settings. Communication with families. Communication with families occurred on a semiregular basis during monthly treatment team meetings. These typically occurred with the group participants family phoned in to the meeting via a conference call. These communications were brief, but informative. The group developer/leader gave a description of the group and its objectives and then reviewed their childs attendance and participation in the group. The group leader then made sure to end on a positive note to encourage the families. These positives included instances when their child assisting another participant, unprompted, who was struggling with the project or when their child said something insightful during group discussion. Communication with health professionals. Communication with health professionals occurred continuously throughout the program development and advocacy process. Communication occurred informally on a daily basis as well as formally via the aforementioned needs assessment. Communication most frequently occurred with recreational therapists as they allowed the group to take place under their program model and schedule. Recreational therapists and behavioral health recovery attendants attended groups and assisted as needed. Regular and frequent communication occurred with various professionals including psychiatrists, psychologists, dieticians, pharmacists, social workers, and nursing staff during staff meetings and treatment team meetings. All staff communication aided in the development and modification of group goals and modifications as well as patient updates. Communication with community organizations. Communication with community organizations occurred prior to delivery of projects in some cases and at the time of delivery in all instances. All community organizations were eager to accept the donated projects and gift them to the people or animals they serve. Community organizations were informed that a local group of youth handmade all projects and learned about their organizations. The volunteers and employees at the organizations were visibly grateful for the projects delivered to them and verbalized an eagerness to see those they serve enjoying the gifts. Since the participants themselves could not personally deliver the projects, community organizations and/or those they serve who were willing were photographed with the projects to show the group participants. This allowed for community organizations to show their thankfulness to those who made the projects as well as allowed the participants to see more concretely the impact they had on their local community. Leadership and advocacy. Throughout this process, leadership has been demonstrated most directly throughout youth program development and implementation. As noted in the previous section on leadership, a directive approach was maintained throughout the majority of the sessions which transitioned into a mix of directive and facilitative depending upon those who were in attendance during a particular session. Leadership was also demonstrated throughout the advocacy portion of this process. Leadership skills including initiative and self-directed behaviors were used to compile information for the anti-stigma campaign from the patients as well as from various resources. A facilitative approach was used when presenting the anti-stigma campaign to the staff in addition to facilitating discussion surrounding anti-stigma plans and staffs thoughts related to mental health stigma. Advocacy was woven throughout both the program development and implementation as well as the creation of the anti-stigma campaign. Advocacy during program development was perhaps demonstrated most clearly in including potential participants in the needs assessment process. This showed both the patients and the staff members that the patients opinions and goals were critical in developing their new program. Establishing this concept is essential to promoting the humanness of each individual being served by the hospital staff. Advocacy for each individual was noted in the program developer going to each treatment team and advocating for the participation of each individual referred to the group. In addition to advocacy in program development, advocacy can clearly been seen in every step of the anti-stigma campaign development. This campaign was created, in and of itself, to advocate for patients. This campaign was designed to promote seeing the humanness in each individual regardless of background, behavior, or diagnosis. By incorporating a discussion explicitly discussing stigma regarding mental illness into the workplace, a more open, and hopefully kinder, environment was demonstrated and put into action for the benefit of everyone involved. Promoting Humanness through Occupational Therapy Throughout this entire process outlined above, advocacy for others has taken place via the promotion of humanness through occupational therapy. Occupational therapy allows people to be themselves in as unhindered a manner as possible. Participation in meaningful occupations promotes the humanness in everyone. Through the volunteerism group for youth as well as the presenting of the narrative medicine based anti-stigma campaign regarding mental health, this message was clearly communicated to all involved as well as all observers of the process. References Allen, Toby. 2019. Real Monsters. Retrieved from: https://www.zestydoesthings.com/realmosters Asher, I. E. (2014). Asher's occupational therapy assessment tools. Arbesman, M., Bazyk, S., & Nochajski, S. M. (2013). Systematic review of occupational therapy and mental health promotion, prevention, and intervention for children and youth. American Journal of Occupational Therapy, 67, e120e130. http:// dx.doi.org/10.5014/ajot.2013.008359 Berg, K. L., Medrano, J., Acharya, K., Lynch, A., & Msall, M. E. (2018). Health impact of participation for vulnerable youth with disabilities. American Journal of Occupational Therapy, 72, 7205195040. https://doi.org/10.5014/ajot. 2018.023622 Brown, C., & Stoffel, V. C. (2011). Occupational therapy in mental health: A vision for participation. FA Davis. Case-Smith, J., & O'Brien, J. C. (2015). Occupational therapy for children and adolescents. Elsevier Health Sciences. Christiansen, C., & Matuska, K. (2011). Ways of living: Intervention strategies to enable participation (4th ed.). Washington D.C. American Occupational Therapy Association, Inc. Corrigan, P. (2004). How stigma interferes with mental health care. American Psychologist, 59(7), 614-625. http://dx.doi.org/10.1037/0003-066X.59.7.614 DAmico, M. L., Jaffe, L. E., & Gardner, J. A. (2018). Evidence for interventions to improve and maintain occupational performance and participation for people with serious mental illness: A systematic review. American Journal of Occupational Therapy, 72, 7205190020. https://doi.org/10.5014/ajot.2018.033332 Hare, R. (2017). Balancing risk-taking and public safety in mental health. Kai Tiaki: Nursing New Zealand, 23(8), 36. Ikiugu, M. N., Nissen, R. M., Bellar, C., Maassen, A., & Van Peursem, K. (2017). Centennial TopicsClinical effectiveness of occupational therapy in mental health: A metaanalysis. American Journal of Occupational Therapy, 71, 7105100020. https://doi.org/10.5014/ajot.2017.024588 Ke, S., Lai, J., Sun, T., Yang, M. M., Wang, J. C. C., & Austin, J. (2015). Healthy young minds: the effects of a 1-hour classroom workshop on mental illness stigma in high school students. Community mental health journal, 51(3), 329-337. Klinedinst, N. J., & Resnick, B. (2016). The Volunteering-in-Place (VIP) Program: Providing meaningful volunteer activity to residents in assisted living with mild cognitive impairment. Geriatric Nursing, 37(3), 221-227. Larivire, N., Couture, ., Blackburn, C., Carbonneau, M., Lacombe, C., Schinck, S. A., ... & StCyr-Tribble, D. (2015). Recovery, as experienced by women with borderline personality disorder. Psychiatric Quarterly, 86(4), 555-568. Leavey, J. E. (2009). Youth experiences of living with mental health problems: Emergence, loss, adaptation and recovery (ELAR). Canadian Journal of Community Mental Health, 24(2), 109-126. Lee, J. Y., Chung, Y. C., Song, J. H., Lee, Y. H., Kim, J. M., Shin, I. S., ... & Kim, S. W. (2018). Contribution of stress and coping strategies to problematic Internet use in patients with schizophrenia spectrum disorders. Comprehensive psychiatry, 87, 89-94. Lipskaya-Velikovsky, L., Kotler, M., & Krupa, T. (2016). Brief ReportDescription of and preliminary findings for Occupational Connections, an intervention for inpatient psychiatry settings. American Journal of Occupational Therapy, 70, 7006350010. http://dx.doi.org/10.5014/ajot.2016.014688 Lindsay, S. (2016). A scoping review of the experiences, benefits, and challenges involved in volunteer work among youth and young adults with a disability. Disability and rehabilitation, 38(16), 1533-1546. Mehta, N., Clement, S., Marcus, E., Stona, A. C., Bezborodovs, N., Evans-Lacko, S., ... & Koschorke, M. (2015). Evidence for effective interventions to reduce mental healthrelated stigma and discrimination in the medium and long term: systematic review. The British Journal of Psychiatry, 207(5), 377-384. Persson D, Erlandsson L-K, Eklund M, Iwarsson S. (2001). Value dimensions, meaning, and complexity in human occupationa tentative structure for analysis. Scand J Occup Ther; 8: 718. Stewart, D., Burrow, H., Duckworth, A., Dhillon, J., Fife, S., Kelly, S., ... & Wright, S. (2015). Thematic analysis of psychiatric patients' perceptions of nursing staff. International Journal of Mental Health Nursing, 24(1), 82-90. Thornicroft, G., Mehta, N., Clement, S., Evans-Lacko, S., Doherty, M., Rose, D., ... & Henderson, C. (2016). Evidence for effective interventions to reduce mental-healthrelated stigma and discrimination. The Lancet, 387(10023), 1123-1132. Appendix A Youth Needs Assessment Thank you for taking the time to help make an occupation-based program that best fits the needs of the patients here at LCH. Please put an X next to any of the occupations (daily tasks) you notice come as a challenge to the patients with which you work. Feel free to elaborate if you feel that would be beneficialmore detail is great! Following the completion of the checklist, please fill in the three blanks with the top three tasks on the list you feel most need to be addressed. Again, thank you for your help! Activities of Daily Living (ADLs) Bathing/showering Grooming (brushing teeth, fixing hair, etc.) Functional mobility (making their way from one place to another) Dressing Other: ______________________________ Instrumental Activities of Daily Living (IADLs) Safety and emergency maintenance Health management and maintenance (including coping skills) Other: ______________________________ Rest/Sleep Rest (relaxation, coping skills, etc.) Sleep preparation (bedtime routines, etc.) Sleep participation Other: ________________________________ Education/Work Formal education participation (school day, homework) Informal education participation (instruction/training in other identified areas of interest) Volunteer participation (including awareness of the needs of others and a desire to help others) Other: ______________________________ Play/Leisure Play/leisure exploration (identifying interests) Play/leisure participation Other: ______________________________ Social Participation Within the community Within the family  With peers/friends Other: ______________________________ Top Needs to be Addressed: 1)____________________________ 2)____________________________ 3)____________________________ Additional Comments: _____________________________________________________________________________________ _____________________________________________________________________________________ _________________________ Appendix B WE CARE General Session Outline Thursday Sessions - Warm Up: Healthy Habit of the Week Review (if applicable) - Social Skill of the Week Introduction and Discussion/Activity - Introduction of Project and Supported Community Organization - Project Work - Wrap Up: Social Skill of the Week Challenge, Questions Saturday Sessions - Warm Up: Social Skill of the Week Review - Healthy Habit of the Week Introduction and Discussion/Activity - Review of Project and Community Organization - Project Work - Wrap Up: Health Habit of the Week Challenge, Questions Appendix C WE CARE Schedule and Contents Week 1: Painting/Bubble Painting Thank You Cards for Hospital Staff - Session 1 - - Social Skill of the Week: Conversation Skills Session 2 - Healthy Habit of the Week: Personal Hygiene Week 2: No-Sew Sock Bunnies for Local Women and Childrens Homeless Shelter - Session 3 - - Social Skill of the Week: Personal Space/Boundaries Session 4 - Healthy Habit of the Week: Sleep Preparation/Routines Week 3: Homemade Braided Dog Toys for Local Animal Shelter - Session 5 - - Social Skill of the Week: Appropriate Dressing Session 6 - Healthy Habit of the Week: Healthy Coping and Volunteering as a Coping Skill Week 4: No-Sew Heart Pillows for Local Adult Day Center - Session 7 - - Social Skill of the Week: Appropriate Asking Session 8 - Healthy Habit of the Week: Table Manners Week 5 & 6: Needlepoint Decorations for Local Pay-What-You-Can Baby Boutique - Session 9 - - Session 10 - - Healthy Habit of the Week: Healthy Snacking Session 11 - - Social Skill of the Week: Resolving Conflict Social Skill of the Week: Active Listening Session 12 - Group Review and Wrap-Up Appendix D Resources Promoting Humanness An Anti-Stigma Campaign istockphoto.com How can I help? Now that youre fired up about promoting the humanness of all people regardless of background, behavior, or diagnosis, youre on the right track to helping end the stigma surrounding mental health diagnoses. Seeing people with mental health diagnoses as just that - people - is just the beginning. But how do you keep this momentum going? Im glad you asked! Here are some resources that may help you in your quest to end the stigma. Books and Short Stories about People Living With Mental Health Diagnoses Books - Girl, Interrupted by Susanna Kaysen - - All the Bright Places by Jennifer Niven - - Mental Health Topics: sexual assault/rape, depression, seeking help An Unquiet Mind by Kay Jamison - - Mental Health Topics: various mental illnesses, psychiatric hospital Speak by Laurie Anderson - - Mental Health Topics: PTSD, anxiety, depression One Flew Over the Cuckoo's Nest by Ken Kesey - - Mental Health Topics: child abuse, recovery, resilience Perks of Being a Wallflower by Stephen Chbosky - - Mental Health Topics: schizophrenia, peer support A Child Called It by Dave Pelzer - - Mental Health Topics: Agoraphobia, OCD, peer and family support Made You Up by Francesca Zappia - - Mental Health Topics: major depressive disorder, insomnia, psychiatric hospital Under Rose-Tainted Skies by Louise Gornall - - Mental Health Topics: anxiety, OCD Its Kind of a Funny Story by Ned Vizzini - - Mental Health Topics: bipolar disorder, suicide, peer support Turtles All the Way Down by John Green - - Mental Health Topics: borderline personality disorder, psychiatric hospital Mental Health Topics: bipolar disorder, mood disorders Brain on Fire by Susannah Cahalan - Mental Health Topics: anti-NMDA receptor encephalitis (autoimmune disease which attacks the brain) - The Bell Jar by Sylvia Plath - Mental Health Topics: schizophrenia, ECT - A Million Little Pieces by James Frey - - The Reason I Jump by Naoki Higashida - - Mental Health Topics: Autism spectrum disorder, empathy The Boy Who Was Raised as a Dog by Bruce D. Perry (MD, PhD) and Maia Szalavitz - - Mental Health Topics: addiction, recovery Mental Health Topics: Childhood trauma, PTSD, ADHD, depression Find more at: goodreads.com/list/tag/mental-illness and bookriot.com/2018/10/02/ya-booksabout-mental-illness/ Short Stories - The Yellow Wallpaper by Charlotte Perkins Gilman - - The Tell-Tale Heart by Edgar Allan Poe - - Mental Health Topics: intellectual disability, lack of empathy A Clean, Well-Lighted Place by Ernest Hemingway - - Mental Health Topics: mental illness, psychiatric hospitals, happy endings Trying to Save Piggy Sneed by John Irving - - Mental Health Topics: suicide, empathy The Man Who Did Not Smile by Yasunari Kawabata - - Mental Health Topics: schizophrenia, paranoia Jumper Down by Don Shea - - Mental Health Topics: depression, anxiety, stigma/lack of understanding Mental Health Topics: loneliness, depression, support Find more at: shortstoryguide.com TV Shows, Movies, and Documentaries about Mental Illness TV Shows - One Day at a Time (Netflix) - - This Is Us (NBC) - - Mental Health Topics: mental illness, addiction, grief, panic attacks 9-1-1 (Fox) - - Mental Health Topics: anxiety, addiction, recovery Jane the Virgin (Netflix) - - Mental Health Topics: PTSD, addiction, recovery Mental Health Topics: mental health of a first responder MOM (CBS) - Mental Health Topics: family and peer support, sobriety Movies - Loving Vincent (Hulu) - - Being Charlie (Netflix) - - Mental Health Topics: resilience of veterans and military families The Dark Horse (Amazon Prime) - - Mental Health Topics: bipolar disorder and addiction Megan Leavey (Amazon Prime) - - Mental Health Topics: substance use among young adults Captain Fantastic (Amazon Prime) - - Mental Health Topics: addiction and family support The Spectacular Now (Netflix) - - Mental Health Topics: mental illness and compassion Mental Health Topics: bipolar disorder, family support, recovery To the Bone (Netflix) - Mental Health Topics: eating disorders, support, group home Documentaries - Heroin(e) (Netflix) - - Dont Call Me Crazy (Netflix) - - Mental Health Topics: eating disorders, suicide, depression The Anonymous People (Netflix) - - Mental Health Topics: eating disorders, self harm, depression, psychiatric hospital Simply Complicated (YouTube) - - Mental Health Topics: addiction, community support Mental Health: addiction, shame, recovery Find more at: communot.aota.org Media Provoking Empathy and Understanding - Real Monsters by Toby Allen - Purpose: To make mental illnesses more easily understood, decrease stigma, start a conversation about mental health - The Hilarious World of Depression Podcast - - Website: zestydoesthings.com/realmosters Purpose: To talk about depression in a de-stigmatizing and honest way ADHD ReWired Podcast - Purpose: To talk about ADHD and its effects on daily life in a down-to-earth and realistic way - MakeItOK.org Anti-Stigma Campaign and Pledge - Purpose: To reduce the stigma of mental illness Organizations to Support - - National Alliance on Mental Illness (NAMI) - Purpose: inform the public about mental illness, support those living with a mental illness - NAMI Greater Indianapolis - Address: 911 East 86th St, Suite 70, Indianapolis, IN 46240 - Phone Number: (317) 257-7517 - Email: info@namiindy.org - Website: namiindy.org Mental Health America - Purpose: promote mental health for all Americans, understand mental health as a critical part of wellness, advocate for those living with mental illnesses - Website: mentalhealthamerica.net American Foundation for Suicide Prevention (AFSP) - Purpose: inform the public about suicide, decrease stigma surrounding suicide, provide support - - AFSP Indiana - Address: 14350 Mundy Dr., Suite 800-199, Noblesville, IN 46060 - Website: afsp.org Project ; - Purpose: help reduce the incidents of suicide in the world through connected community and greater access to information and resources - Website: projectsemicolon.com Man Therapy - Purpose: help [men] with any problem that life sends their way, something to set them straight on the realities of suicide and mental health, and in the end, a tool to help put a stop to the suicide deaths of so many of our men - Website: mantherapy.org Resources to Know and Understand My Anti-Stigma Plan One thing I will do today to increase my understanding of lived experiences of people who have mental health diagnoses: 1. ______________________________________________________________________________ Two things I will do this week to increase my understanding of lived experiences of people who have mental health diagnoses: 1. ______________________________________________________________________________ 2. ______________________________________________________________________________ Two things I will do this year to increase my understanding of lived experiences of people who have mental health diagnoses: 1. ______________________________________________________________________________ 2. ______________________________________________________________________________ My #1 Anti-Stigma Goal for 2019 _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ Appendix E Goal 1: Participants will increase their understanding and use of appropriate social skills as evidenced by participant reporting (with specific example) use of Social Skill of the Week during at least 4/6 weeks (majority of entire eligible group). Goal 2: Participants will increase their understanding and use of age appropriate hygiene and grooming as evidenced by participant reporting (with specific example) use of Healthy Habit of the Week during at least 3/5 weeks (majority of entire eligible group). Goal 3: Participants will demonstrate an investment into community organization(s) by verbalizing an understanding and interest in a minimum of one community organization supported by the groups projects (majority of entire eligible group). Goal 4: Participants will participate in effective leisure exploration as evidenced by verbalizing a minimum of one new leisure interests gained through participation in the group (majority of entire eligible group). 12 Group sessions between February 4 March 15, 2019 12 Group sessions between February 4 March 15, 2019 12 Group sessions between February 4 March 15, 2019 12 Group sessions between February 4 March 15, 2019 Much Less than Expected (-2) Participants reported (with specific example) use of Social Skill of the Week during 2/6 weeks. Participants reported (with specific example) use of Healthy Habit of the Week during 1/5 weeks. Participants identified neither an understanding nor interest in 1 community organization. Participants verbalized decreased leisure interest following the completion of the group. Somewhat Less than Expected (-1) Participants reported (with specific example) use of Social Skill of the Week during 3/6 weeks. Participants reported (with specific example) use of Healthy Habit of the Week during 2/5 weeks. Participants identified an understanding, but not interest, in 1 community organization. Participants verbalized no new leisure interest following the completion of the group. Expected Level of Outcome (0) Participants reported (with specific example) use of Social Skill of the Week during 4/6 weeks. Participants reported (with specific example) use of Healthy Habit of the Week during 3/5 weeks. Participants identified an understanding and interest in 1 community organization. Participants verbalized 1 new leisure interest following the completion of the group. Timeline Somewhat More than Expected (+1) Participants reported (with specific example) use of Social Skill of the Week during 5/6 weeks. Participants reported (with specific example) use of Healthy Habit of the Week during a 4/5 weeks. Participants identified an understanding and interest in 2 community organizations. Participants verbalized 2 new leisure interests following the completion of the group. Much More than Expected (+2) Participants reported (with specific example) use of Social Skill of the Week during 6/6 weeks. Participants reported (with specific example) use of Healthy Habit of the Week during 5/5 weeks. Participants identified an understanding and interest in 3+ community organizations. Participants verbalized 3+ new leisure interests following the completion of the group. Appendix F Goal 1: Staff attending anti-stigma program will have an increased understanding of and empathy for patients they work with on a daily basis as demonstrated by a change of 1 point on a 10 point scale addressing the topic (average of all participants). Goal 2: Staff attending anti-stigma program will have an increased understanding of biases they have towards people with various mental illnesses as evidenced by identifying a minimum of two mindsets they will work to improve (average of all participants). Goal 3: Staff attending anti-stigma program will feel better equipped to empathize with people who have various mental illnesses as evidenced by identifying 2 ways they will work to decrease mental health related stigma (average of all participants). Timeline 30 minute program between April 2 April 12, 2019 30 minute program between April 2 April 12, 2019 30 minute program between April 2 April 12, 2019 Much Less than Expected (-2) Participants reported a change of 0 pts on a scale determining understanding and empathy. Participants identified 0 stigmatized or biased based mindsets they will work to improve. Participants identified 0 ways they will work to increase their empathy. Participants identified 0.1-1.9 stigmatized or biased based mindset they will work to improve. Participants identified 0.1-1.9 way they will work to increase their empathy. Participants identified 2 stigmatized or biased based mindsets they will work to improve. Participants identified 2 ways they will work to increase their empathy. Somewhat Less Participants reported a than Expected change of 0.1-0.9 pts on (-1) a scale determining understanding and empathy. Expected Level of Outcome (0) Participants reported a change of 1 pt on a scale determining understanding and empathy. Somewhat Participants reported a More than change of 1.1-1.9 pts on Expected (+1) a scale determining understanding and empathy. Participants identified 2.1-3.9 stigmatized or biased based mindsets they will work to improve. Participants identified 2.1-3.9 ways they will work to increase their empathy. Much More than Expected (+2) Participants identified 4+ stigmatized or biased based mindsets they will work to improve. Participants identified 4+ ways they will work to increase their empathy. Participants reported a change of 2+ pts on a scale determining understanding and empathy. Appendix G Pre/Post Test Promoting Humanness An Anti-Stigma Campaign Pre-Test (please circle or write your answers) I understand, and can empathize with, the patients I work with on daily basis. Strongly Disagree 1 2 Neutral 3 4 5 Strongly Agree 6 7 8 9 10 Do you feel you have negative biases related to mental health diagnoses and/or the people who have those diagnoses? Yes No Post-Test (please circle or write your answers) I understand, and can empathize with, the patients I work with on daily basis. Strongly Disagree 1 2 Neutral 3 4 5 Strongly Agree 6 7 8 9 10 What are two negative mindsets/biases you will seek to improve upon in the coming weeks? (No judgement here!) 1. ______________________________________________________________________________ 2. ______________________________________________________________________________ Please name at least two ways you will work to decrease your negative biases/increase your ability to be empathetic. (This can be from your Anti-Stigma Plan). 1. ______________________________________________________________________________ 2. ______________________________________________________________________________ 3. ______________________________________________________________________________ 4. ______________________________________________________________________________  ...

... Running head: A FEEDING AND EATING PROGRAM 1 Increasing Independence and Participation in Mealtimes for Children with Feeding Problems: A Feeding and Eating Program Elizabeth Mathews 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 A FEEDING AND EATING PROGRAM 2 A Capstone Project Entitled Increasing Independence and Participation in Mealtimes for Children with Feeding Problems: A Feeding and Eating Program 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 Elizabeth Mathews, 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 A FEEDING AND EATING PROGRAM 3 Abstract Feeding and eating problems are common among children with and without disabilities and can have long lasting adverse effects on both the child and their family. After conducting a needs assessment at Bloom Pediatric Therapy, it was determined that Bloom and their clients would benefit from a structured eating program. The purpose of this Doctoral Capstone Experience (DCE) was to create and implement a program to increase independence and participation during mealtimes for children with eating problems. The program included eight handouts, each created to meet a specific discovered need. The handouts included: a session form, program information, eating problem facts, calorie boosters, food lists, food inventory checklist, homework form, and eating intake form. To evaluate the effectiveness of the program, the researcher utilized survey methodology in the form of a paper questionnaire to collect feedback about Blooms eating therapy before and after the program was implemented. Parents (pre-n=9; post-n=7) reported greater satisfaction with their childs eating (pre-mean: 1.89; post-mean: 3.29) and reported their child ate an increased number of foods (pre-mean: 1.78; post-mean: 2.57). Overall, the program increased client satisfaction and improved parent reports of their childs participation and independence with eating. A FEEDING AND EATING PROGRAM 4 Increasing Independence and Participation in Mealtimes for Children with Feeding Problems: A Feeding and Eating Program Eating is an important daily occupation that begins in infancy and continues throughout life (Absolom & Roberts, 2011). Eating problems are common among children, and are one of the most frequent concerns parents discuss with pediatric health care professionals (Gueron-Sela, Atzaba-Poria, Meiri, & Yerushalmi, 2011). These problems can also have an effect on neurological and psychomotor development (Bryant-Waugh, Markham, Kreipe, & Walsh, 2010; Sharp, Jaquess, Morton, & Herzinger, 2010), as well as increase caregiver stress (Greer, Gulotta, Masler, & Laud, 2007). Occupational therapists and occupational therapy assistants (OT practitioners) are uniquely qualified to address these eating problems (American Occupational Therapy Association [AOTA], 2017). The purpose of this doctoral capstone experience (DCE) is to create and implement a feeding and eating program at a pediatric therapy clinic with the goal of increasing independence and participation during mealtimes for children with eating difficulties. Review of Literature Feeding and Eating The process of bringing food from the environment into the stomach is a complex task that involves feeding, eating, and swallowing. AOTA defines feeding as setting up, arranging, and bringing food [or fluid] from the plate or cup to the mouth while it defines eating as keeping and manipulating food or fluid in the mouth and swallowing it (AOTA, 2014a, p. S19). Swallowing is defined as moving food from the mouth to the stomach (AOTA, 2014a, S19). For the purposes of this paper, unless otherwise specified, the process of feeding, eating and swallowing will be referred to simply as eating. Eating in its simplest form is the process A FEEDING AND EATING PROGRAM 5 of taking in adequate nutrition which is essential for normal growth and development (CaseSmith & OBrien, 2015, p. 389). It is also important for health and wellness as it plays a critical role in pediatric emotional, social, and cultural maturation (Case-Smith & OBrien, 2015). Eating is the most complex physical task individuals participate in, as it utilizes all of the bodys systems including many skeletal muscles, the brain, cranial nerves, gastrointestinal tract, heart, and the vascular, respiratory, endocrine and metabolic systems (Toomey, 2002). Swallowing alone involves six cranial nerves (McCaffrey, 2013) and approximately 50 pairs of muscles (National Institute on Deafness and Other Communication Disorders, 2018). Development of Eating As nutritional requirements continually change from birth to adolescence, so does a childs eating development, beginning from total dependence and moving toward independent self-feeding (Case-Smith & OBrien, 2015). For the first month following birth, the ability to manage the physical coordination of eating is automatic but from one to six months of age, primitive reflexessuch as rooting, sucking, and swallowingtake over and pathways form in the brain for sensory and motor control over eating (Toomey, 2002). By six months, eating is a learned behavior (Toomey, 2002). Dr. Kay Toomey (2002), a pediatric psychologist and developer of the Sequential Oral Sensory (SOS) approach to feeding, identified the following six skills as necessary for successful eating: postural stability, oral-motor skills, jaw skills, sensory skills, hand-to-mouth skills, and parenting skills. Postural stability. Postural stability or balance (Pendleton & Schultz-Krohn, 2017) refers to the ability to maintain the bodys position within space (Shumway-Cook & Woollacott, 2007). As foods become more difficult to manage, the ability to sit upright is critical for eating A FEEDING AND EATING PROGRAM 6 and can be affected not only by the childs motor ability to control postural stability but the chair supporting the childs body (Toomey, 2002). Oral-motor skills. The oral-motor skills necessary for table food differ from those utilized for taking the breast or bottle (Toomey, 2002). The tongue transitions from forward and backward movements during breast or bottle feeding to waves that move the food from the front to the back of the mouth when eating table food (Toomey, 2002). As the child ages the tongue is able to cup utensils, and lip closure occurs (Wolf & Glass, 1992). Tongue lateralization, the side to side movement of the tongue that places bites of food onto the molars to be chewed, is the skill necessary to transition from purees to more solid food (Toomey, 2002). Without tongue lateralization, food may become stuck on the tongue and cause gagging (Toomey, 2002). This skill is extremely important as children who often experience gagging may associate this unpleasantness with eating and might avoid certain foods or all foods completely (Toomey, 2002). Jaw skills. The jaw is used minimally for breast or bottle eating, utilized only for compression movements; during spoon eating, it is utilized only for open and closing motions (Toomey, 2002). Jaw skills are necessary beginning at nine to ten months of age, as the child learns to break food apart by an up-and-down movement pattern called munching (Toomey, 2002). This munching pattern evolves into a more rotary movement at 12 to 14 months as the child is introduced to more complex and chewier foods (Wolf & Glass, 1992). Sensory skills. Eating involves the integration of all sensory systems including not only smelling, seeing, hearing, tasting, and touching, but also balance, body awareness, and proprioceptive input or information from the joints (Toomey, 2002). For successful eating, this integration must occur with each chewing motion: A FEEDING AND EATING PROGRAM 7 the sight of the food changes as it is chewed, how it feels changes, what it sounds like in the mouth changes, the taste and the smell actually change, and adjustments need to be made in balance, location of the food, and pressure being exerted (Toomey, 2002, p. 6). Hand-to-mouth skills. Finger feeding and hand-to-mouth skills align with the fine and gross motor skills the child is developing. At four to six months, the child is reaching and transferring objects from one hand to another (Toomey, 2002). By six months the child has a palmar grasp and can rake food into their palm and bring it to the mouth (Toomey, 2002). Around eight to nine months, the child has a radial-digital grasp which allows the food to be held on one end and explored in the mouth on the other end (Toomey, 2002). At 10 to 12 months, the child uses a pincer grasp and is able to isolate picking up small pieces of food and place in the mouth (Toomey, 2002). By 14 to 16 months, self-feeding skills are typically mastered, then utensil use improves at two years and is mastered by age three (Toomey, 2002). Parenting skills. A childs food preferences are strongly correlated to other family members (Skinner et al., 1998). Parents are responsible for where, when, and what the child eats (Phalen, 2013). Parents need to be mindful of the potential signals they are sending about food (Toomey, 2002). If a child senses that a parent dislikes a food or views it as unsafe, the child may reject the food (Toomey, 2002). Parents need to teach their child not only how to eat with developmentally appropriate food, but introduce a variety of foods on multiple occasions (Toomey, 2002). Mealtimes should be enjoyable, allowing the child to explore the food in fun and messy ways (Toomey, 2002). Eating Concerns Eating problems are common among children occurring in up to 50% of those typically developing (Phalen, 2013) and up to 80% of children with atypical development (Fishbein, A FEEDING AND EATING PROGRAM 8 Benton, & Struthers, 2014). This occurrence is even higher within specific populations, such as autism spectrum disorder (ASD), where the prevalence is estimated to be as high as 90% (Kodak & Piazza, 2008). Pediatric eating problems can often last four to six years (Dahl, Rydell, & Sundelin, 1994; Dahl & Sundelin, 1992) and are thought to be correlated to adolescent and adult eating disorders (Marchi & Cohen, 1990; Kotler, Cohen, Davies, Pine, & Walsh, 2001). The following are pediatric conditions associated with eating problems: prematurity; chromosomal or genetic abnormalities, such as Down syndrome; craniofacial abnormities, such as cleft palate or Pierre-Robin syndrome; gastrointestinal disorders, such as chronic constipation or reflux disease; acquired brain impairments, such as cerebral palsy, stroke, or traumatic brain injury; and neurodevelopmental disorders, such as intellectual disability or ASD (Phalen, 2013). The American Psychiatric Association defines feeding and eating disorders in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (2013) as a persistent disturbance of eating or eating-related behavior that results in the altered consumption or absorption of food and that significantly impairs physical health or psychosocial functioning (p. 329). Eating problems are expansive and varied including: dysphagia (swallowing difficulty), feeding aversion (refusal to eat), oral defensiveness (gags or chokes easily while eating, resistant to tooth brushing), tactile sensitivity (increased sensitivity to touch), problem eating (restrictive range or variety of foods, usually fewer than 20 foods accepted, refuses entire categories of food textures or nutrition groups), picky eating (at least 30 foods accepted, eats at least 1 food from most food textures or nutrition group), failure to thrive (poor growth and weight loss), and related disorders (Fishbein et al., 2014, p. 636). A FEEDING AND EATING PROGRAM 9 Eating problems are associated with health concerns including adverse effects on nutrition, overall development, and general well-being (Case-Smith & OBrien, 2015, p. 390). In the acute phase, consequences can include poor growth, vulnerability to prolonged sickness, cognitive development deficits, and future eating disorders (Chatoor & Macaoay, 2008). Sharp et al., (2010) compiled from previous literature the following negative outcomes associated with chronic eating problems: developmental and psychological impairments, social deficits, malnutrition, decreased academic success, feeding tube placement or other invasive medical procedures, and even death. Impact on Caregiver and Family Eating is a shared process which involves complicated interactions between the parent and child (Gueron-Sela et al., 2011). Therefore, eating problems affect the entire family (Martorana, Bove, & Scarcelli, 2008). Stress is created for both the child and parents when mealtime participation is challenging (Nichols, Wasemann, Coatie, Moon, & Weller, 2018). This stress can lead to aversions to mealtimes and tension throughout the day (Silverman et al., 2013). Ultimately these negative experiences can lead to a decrease in quality of life for both the caregiver, and family (Fishbein et al., 2014). Parenting stress resulting from eating problems is equivalent to or exceeds that observed with other lasting pediatric disorders (Pedersen, Parsons, & Dewey, 2004). Eating Therapy Settings Eating problems can be addressed in a number of settings and include any combination of the following: inpatient or outpatient therapy, group or individual therapy, and intensive or weekly sessions. Different combinations are chosen based on each childs needs, including the intensity of the eating problem. Intensive eating programs are generally for children with severe A FEEDING AND EATING PROGRAM 10 eating problems (Dempster, Burdo-Hartman, Halpin, & Williams, 2015) who have often already failed traditional outpatient eating therapy (Linscheid, 2006). In a study comparing inpatient and outpatient settings, van der Gaag & Mnow (2014) found inpatient treatment to be more successful but outpatient treatment to have fewer relapses. The duration of inpatient treatment is often shorter than outpatient treatment (van der Gaag & Mnow, 2014), but this is not always feasible given the intensity of inpatient treatments. Outpatient settings are frequently utilized to address eating problems and have demonstrated good results (van der Gaag & Mnow, 2014). There is limited research on group interventions for pediatric eating problems (van der Gaag & Mnow, 2014). Occupational Therapy Occupational therapy (OT) has a long history of expertise in activities of daily living (ADL), including the eating performance of individuals across the lifespan (AOTA, 2017). OT practitioners possess the training, knowledge, and abilities needed to provide comprehensive management of eating problems including evaluations and interventions (AOTA, 2017). Due to the professions holistic view, OT practitioners are uniquely qualified to address eating problems as practitioners assess not only the physiological factors but also the psychosocial, cultural, and environmental factors involved with these aspects of daily performance (AOTA, 2017, p. 1). OT interventions focus on facilitating an individuals ability to participate in valued and fulfilling ADL related to eating, such as eating independently, joining friends for lunch, and feeding a child (AOTA, 2017, p.1). Interventions often involve not only the client but others including the family and caregiver (AOTA, 2017). Interventions can include positioning, adaptive equipment, environmental modification, eating strategies or techniques, and education to the client or caregiver (AOTA, 2017). A FEEDING AND EATING PROGRAM 11 With children, OT practitioners frequently focus on increasing eating participation and improving mealtime behaviors by enhancing the mechanics of eating or promoting eating interactions (Howe & Wang, 2013). OT practitioners work with parents to enhance positive caregiver and environmental interactions (Howe & Wang, 2013). Some of the approaches to improving the mechanics of eating include: establishing a developmental sequence of selffeeding skills, such as teaching the child to hold a utensil; improving acceptance of a wide variety of foods and textures, by using various sensorimotor-based feeding strategies or behavioral modification methods to improve feeding behaviors of children who have restricted food preferences or food aversion; and improving oralmotor skills, such as sucking or chewing (Howe & Wang, 2013, p. 405-406). Project Overview Project Site and Targeted Population Bloom Pediatric Therapy (Bloom) is a privately owned outpatient pediatric clinic in Bloomington, Indiana that began operating in June 2017 (Bloom Pediatric Therapy, 2017b). This clinic provides occupational therapy, physical therapy, and speech therapy services (Bloom Pediatric Therapy, 2017a). Bloom Pediatric Therapy (2017a) strives to assist every child to enjoy being a kid and reach his or her full potential. Bloom provides holistic, fun and encouraging therapy services that involve the entire family and everyday life (Bloom Pediatric Therapy, 2017a). The OT department at Bloom is comprised of two occupational therapists, both of whom are well-trained in addressing eating difficulties (Bloom Pediatric Therapy, 2017b). There is not, however, currently an eating program in place. Both therapists complete eating evaluations and interventions based on their own personal training, style, and experiences. There are a variety of A FEEDING AND EATING PROGRAM 12 approaches the therapists are trained in, including SOS, food chaining, and other nonspecific approaches. Forty percent of the children on the OT caseload at Bloom are being treated for eating difficulties. This includes a wide variety of different diagnoses and conditions, as well as a range of ages. Eating appointments are generally one time per week and last 30-60 minutes. Typically, children are assigned to one therapist, but often due to scheduling conflicts, the child might be seen by either therapist on different occasions. Purpose The purpose of this DCE was to develop and implement an eating program for Bloom Pediatric Therapy. This included creating standard handouts such as a food checklist, a parent questionnaire, and many others. Additionally, the program encompassed a way to hold parents more accountable to promote carryover from week to week and ensured a more defined starting and ending point for therapy. The program was designed to improve the independence and participation with mealtime for children with eating difficulties. This program will be beneficial for Bloom as it served to create a more unified approach to eating throughout the organization. This may help provide a smoother transition for kids during scheduling conflicts when they must be seen by a different therapist. Additionally, creating educational information and handouts for parents and caregivers may improve quality of care and increase carryover at home. Theoretical Framework The approach of this eating program is guided by the Ecology of Human Performance (EHP) theory/model, as well as the sensory integration (SI) and behavioral frames of reference, including Albert Banduras social learning theory. A FEEDING AND EATING PROGRAM 13 Ecology of human performance. Eating problems are affected by the childs environment and the caregivers involved. This aligns with EHPs transactional contextualism which suggests that an individual affects and is affected by their environment and environmental press, indicating different environments may force different behaviors (Brown, 2014). This supports the idea that caregiver stress affects the child and the child affects the caregivers stress. EHP generally refers to the person as an individual, but for this project the person will instead be the population of children with eating problems. Performance range, which is based on the transaction between the person and context, will represent the ability to functionally participate in mealtime (Cole & Tufano, 2008, p. 119). For a child to be successful, the performance range needs to grow and encompass as many tasks as possible. This is done by increasing the persons skills and abilities or by increasing the context. This piece is extremely important in guiding this project because not only do the childs skills and abilities need to be addressed but so does the childs context, which includes the childs supports, family, customs, and environment. Sensory integration. Sensory integration (SI) was originally developed by A. Jean Ayres for children with learning disabilities and is defined by neuroscientists as the brains ability to organize sensory information received from the body and environment, and to produce an adaptive response (Cole & Tufano, 2008, p. 229). Sensory skills were the fourth skill identified earlier as necessary for successful eating (Toomey, 2002). Several studies, including a systematic review by Koenig & Rudney (2010), demonstrated the correlation between sensory processing difficulties and challenges with eating. The goals of SI are to normalize sensory processing and produce an adaptive response (Cole & Tufano, 2008). According to SI, change can occur through guided sensory input (Cole & Tufano, 2008). This is because the brain, A FEEDING AND EATING PROGRAM 14 especially the young brain, is naturally malleable (Ayres, 1989, p. 12), which means it has the ability to reorganize itself in response to intervention (Cole & Tufano, 2008, p. 229). This is true for eating because it involves the integration of all the sensory systems (Toomey, 2002). Therefore, this programs eating sessions should include guided sensory input with food so the child can produce appropriate and adaptive responses. Utilizing SI, the OT practitioners role should be aiding clients in identifying obtainable and socially acceptable tasks that contain the intensity and type of sensation needed to regulate sensory processing and allow an adaptive response to be produced (Cole & Tufano, 2008). Engagement in these activities allow the child to better regulate their sensory input and ideally increase their acceptance or tolerance of foods. Behavioral approaches. According to the behavioral frames of references, behavior is learned and can therefore be reshaped with reinforcement (Cole & Tufano, 2008). Reinforced behaviors are often repeated (Cole & Tufano, 2008). For eating problems, desired actions and behaviors can be reinforced so that they continue. Intermittent positive reinforcement is the best way to promote desired behaviors, because rewards are unpredictable (Cole & Tufano, 2008). Shaping is reinforcing a desired behavior again and again until the individual learns to do the task (Cole & Tufano, 2008). Following behavioral approaches, the program will include both intermittent positive reinforcement and shaping. Additionally, due to the numerous steps involved in eating, the program will also include chaining with these steps. For example, when a new food is introduced the child will only be asked to tolerate it in the room and slowly move through a number of steps until the child is comfortable with touching the food and ideally ultimately eating it. A FEEDING AND EATING PROGRAM 15 Albert Banduras social learning theory. Banduras social learning theory builds on reinforcement by introducing vicarious reinforcement, which suggesst behaviors can not only be directly reinforced but can be reinforced by observing the reinforcement of others behavior (Cronin & Mandich, 2015). Banduras theory explains how human behavior is learned by considering the interaction between the person, behavior, and environment (Cole & Tufano, 2008). After six months, eating becomes a learned behavior (Toomey, 2002). Food preferences are influenced by many environmental factors including food exposure and obtainability (Sullivan & Birch, 1990), monitoring of food intake by parents (Klesges, Stein, Eck, Isbell & Klesges, 1991), and mealtime activities such as watching television (Coon, Goldberg, Rogers & Tucker, 2001). For eating problems, it is important to address not only the person and their behaviors, but also the environment including food exposure. Literature suggest food preferences increase with repeated exposure; two-year-olds require ten or more exposures (Birch & Marlin, 1982) and children ages four to five require eight to 15 exposures (Sullivan & Birch, 1990). For this eating program, food will be presented multiple times to increase exposure with the hopes of increasing the childs preferences. Utilizing social learning theory as a guide, this project will strive to address all environmental factors. By age eight, a childs environmental influences on food expand outside the family to include peers (Birch, 1980), preschool or daycare (Briley, Jastrow, Vickers, & Roberts-Gray, 1999), school meals (Cullen, Eagan, Baranowski, & Owen, 2000), and nutritional education programs provided by the school (Resnicow et al., 1997). Skinner, Carruth, Bounds and Ziegler (2002) found that despite these added environmental influences the mother remains the primary influence of food preference. From this finding, Skinner et al. (2002) concluded mothers need assistance in teaching their child to enjoy different types of foods and should be A FEEDING AND EATING PROGRAM 16 taught effective strategies for coping with the transition from infant/junior foods to table foods (p. 1646). Fraser, Wallis & John (2004) found a single parent education session significantly improved parent-rated attitudes and feelings about eating, as well as child mealtime behavior. This project will include education to parents/caregivers in the form of handouts. The environment in which each eating event occurs and the event itself may contribute to the development of eating patterns in early and middle childhood (Skinner et al., 2002). For eating programs, it is important to provide positive interactions with foods. This means never forcing a child to move past the steps of feeding in which they are comfortable. Skinner et al., (2002) found that dietary variety in school-aged children was influenced by food-related experiences before age two. This aligns with Skinner et al. (2002), which suggested food preferences from age two to four were highly predictive of performance at age eight. Since it is important to identifying eating needs early, this project will create a handout to evaluate eating problems. Bandura emphasizes observing and modeling as key components with learning new behaviors (Cronin & Mandich, 2015). Skinner et al. (2002) reported modeling by parents and siblings influenced potential food preference. Modeling, a form of teaching by example, (Cole & Tufano, 2008) has four crucial components (Cronin & Mandich, 2015). The first, attention to the model, explains exposure does not ensure coping behavior; the individual must attend and observe the behavior (Bandura & Walters, 1977). The second, retention of past experiences, clarifies the observer must remember what was observed or noticed (Bandura & Walter, 1977). The third, motor reproduction or the ability to reproduce the response physically, means the observer must possess the physical capability to complete the behavior and then perform the observed behavior (Bandura & Walter, 1977). The fourth and final component is reinforcement A FEEDING AND EATING PROGRAM 17 and motivation to produce the response; this states the environment produces a response to the behavior that changes the probability that the behavior will occur again (Bandura & Walter, 1977). Individuals choose to imitate behaviors based on perceived outcomes and/or consequences (Cole & Tufano, 2008). Following the social learning theory, the eating program will include working through the four component of modeling to increase desired behavior and ultimately increase independence and participation with eating. The above theoretical framework will be used in this project to guide program development in hopes to lessen the effects of common pediatric eating problems and allow children to better engage in occupations surrounding eating. Screening and Evaluation I began this project by completing a needs assessment at Bloom. The needs assessment included observing multiple eating therapy sessions, as well as conducting unstructured interviews with both occupational therapists on staff. Research supports the utilization of unstructured interviews when a researcher has a sufficient understanding of an issue but still remains open for that understanding to be changed by the respondents (Cohen & Crabtree, 2006). Prior to the interviews, I knew that Bloom was requesting revisions to their eating therapy, but I was open to what these changes should include. Additionally, unstructured interviews increase validity as this type of interview allows the researcher to gain a deeper understanding of the issue, request explanation or clarification, and permits the respondent to guide the direction of the conversation (McLeod, 2014). This was important as I wanted to allow Bloom to fully express their needs for this project. I utilized survey methodology in the form of a paper questionnaire to collect feedback from parents on the existing eating therapy. This method was chosen to allow for convenient A FEEDING AND EATING PROGRAM 18 and low cost data gathering (Creswell, 2009), as well as because literature supported the accuracy of mother-rated evaluations regarding food preferences (Skinner et al., 2002). I developed the novel questionnaire based on a review of the literature. Questions were developed to explore parent views on their childs eating challenges and Blooms eating therapy. For novel questionnaires with no psychometric properties, expert reviewers are recommended to establish content validity by identifying and correcting technical issues (Carter, Lubinsky, & Domholdt, 2011; Dillman, Smyth, & Christian, 2014). I obtained feedback from both occupational therapists on staff and two doctoral OT student researchers. Based on this feedback I finalized a 10-item questionnaire that included closed and open-ended questions. See Appendix A for the finalized parent eating questionnaire. The finalized questionnaire was distributed to parents/caregivers of existing eating therapy clients at Bloom, ages 0-18 with a variety of diagnoses or impairments. Due to poor weather and many session cancellations, not all families received the questionnaire. Thirteen questionnaires were distributed and nine were returned. Compare and Contrast Processes The above screening and evaluation processes were based on the practice area and service provision model utilized by the site. Services in an outpatient pediatric setting are a traditional/existing practice area that generally follow the medical model for service provision. At Bloom, one-on-one services are provided directly, and these can be reimbursed by insurance or private payer sources. The current service model is mandated by policy, regulatory agencies, and reimbursement and compliance standards. School-based services. Another traditional/existing OT practice area in pediatrics is school-based services. School OT practitioners work as a team with students, parents, teachers and other staff to ensure the student receives the best school experience possible (National A FEEDING AND EATING PROGRAM 19 Behavioral Support Service [NBSS], 2011). OT practitioners in the school setting are required to address occupations specific to supporting a students ability to participate in education (AOTA, 2016). This includes enhancing a students ability to access and be successful in all learning environments (NBSS, 2011). Within the schools, OT practitioners support academic and nonacademic outcomes related to education including: social skills, math, reading, and writing (i.e., literacy), behavioral management, recess, participation in sports, self-help skills, prevocational/vocational participation, transportation and more (AOTA, 2016, p. 1). Eating programs are not typically utilized within the school setting as outcomes are generally not directly related to education participation. However, an OT practioner might see students in a group during lunchtime or address self-help skills related to lunchtime. Even though school-based OT is a traditional practice area it does not follow the traditional medical model. Similar to Bloom, services in the school system can be provided directly one-on-one, but services can also be provided directly in a group, or even indirectly through consultation. School OT practitioners can serve individual students, groups of students, whole classrooms, and whole school initiatives (AOTA, 2016). In public school systems, OT services are not reimbursed by insurance or private payer sources but instead are funded by federal, state, and local funds depending on the purpose of the services provided (AOTA, 2014b). In states that have agreements with Medicaid programs, additional reimbursement can occur for school OT services (AOTA, 2014b). OT in the school is a related service under Part B of the Individuals with Disabilities Education Act (IDEA) (AOTA, 2000, p.1). For a student to receive school-based OT services the child must be deemed eligible for special education determined through the individualized education program (IEP) process (AOTA, 2016). In order to receive an IEP, the student must be A FEEDING AND EATING PROGRAM 20 evaluated and determined to meet eligibility as deemed from IDEA. If a student does not have an IEP, they are not eligible to receive OT services. Furthermore, having an IEP does not automatically ensure a student will receive OT services; this determination is a result of a multidisciplinary team and the OT evaluation (AOTA, 2000). Although many of the kids receiving OT services at Bloom would meet the eligibility for an IEP, this is not a requirement to receive services at Bloom. For a child to be seen at Bloom, a physicians referral is required; the occupational therapist then completes an evaluation to determine need for OT services. Services are determined by each childs need and this decision is determined by the occupational therapist and does not require a multidisciplinary team. OT school-based services are also mandated by policy, regulatory agencies, and reimbursement and compliance standards, but given the differences in settings, these differ from those mandating the services provided at Bloom. What an OT practitioner is capable of doing with the results of an evaluation is mandated by reimbursement standards which is dictated by the practice area and site. An intensive eating program was identified through the needs assessment as something that Bloom desired but was discovered to be unfeasible due to reimbursement procedures. The main obstacle preventing this program was the high intensity needed for treatment sessions. Intensive eating programs require kids to be seen as many as 5 days a week for several weeks. This high intensity is not possible at Bloom, given the current reimbursement standards. Intensive programs are more conceivable within the school setting. As mentioned earlier eating programs are not typically utilized within the school setting, but if a practitioner found a need for another intensive program related to education it is probable to be implemented. The frequency and intensity a child is seen by OT within the school is established using the multidisciplinary team and listed within the IEP; this is not generally specifically A FEEDING AND EATING PROGRAM 21 dictated by reimbursement standards as each treatment session is not typically individually reimbursed. If an OT practitioner discovered an intensive program that students would benefit from, the practitioner could approach the team to request the increase in intensity for that student. If the team agreed, this change would be noted in the IEP and the practitioner could treat the student more frequently. The OT practitioner would have to have the availability within their schedule but this could be possible in the schools where it is not at Bloom. Community-based services. Community-based settings are often considered a nontraditional or an emerging OT practice area, depending on the specific setting. Approximately 18% of OT practitioners work in community-based settings (AOTA, 2010). Emerging community-based settings include adult day centers, senior centers, independent living centers, supervised housing like group home and community-based mental health programs, while more established community settings include early intervention and home health (Scaffa & Reitz, 2013). Despite being a non-traditional practice area, community-based practice was introduced to the OT profession in the early 1900s by George Barton and Eleanor Clarke Slagle (Scaffa & Reitz, 2013). Over the years, community-based practice has expanded to allow for greater opportunities by overcoming many of the original obstacles experienced (Scaffa & Reitz, 2013). However, since community-based practice is a non-traditional setting, it does still experience more obstacles than established traditional settings. Nontraditional or emerging practice areas often have limited research and experts, which could make creating a screening and evaluation process difficult. Since this project is at a site with a traditional practice area, the researcher was able to utilize literature to create the paper questionnaire for the survey methodology and expert reviewers to improve content validity of the A FEEDING AND EATING PROGRAM 22 survey. This may not have been possible if the site was an emerging practice area because there might not have been literature or experts available to review. Compare and contrast conclusion. Although what an OT practitioner is able to do is dictated by many variables within the setting, the overall purpose remains the same regardless of the setting. OT practitioners believe that participating in meaningful occupations can improve lives. Practitioners strive to aid individuals to live life to the fullest regardless of traditional or nontraditional practice area, the only difference is the means in which this is accomplished. Project Clients Due to the nature of the project, there are two groups of clientele that make up the DCE project clients: the OT department at Bloom Pediatric therapy and the population of children with eating problems, including their families. The results of the needs assessment identified two themes for the clients being served: the need for Blooms eating therapy to be revised and the need to address the occupational performance and participation deficits surrounding eating for children with eating problems. Implementation Phase An updated eating program was developed for Bloom by revising the existing eating therapy. The new programs emphasis is on promoting participation and independence in eating for children with eating problems, which meets the needs of all clients being served. The revisions to the existing eating therapy included creating and implementing handouts. The specific purpose and use of each handout varies and falls within different types of interventions. Development of Handouts Each handout was created following the same steps. A need for a specific type of handout was discovered through the methods mentioned above. A review of the literature was A FEEDING AND EATING PROGRAM 23 conducted in that specific topic area and relevant information was compiled. A rough draft of the handout was created. The draft was reviewed and assessed by both occupational therapists on staff, and changes were made as necessary. All handouts but one were piloted during one to five therapy sessions, and changes were made as necessary. The handout not piloted was the eating intake form because it had to be sent to an outside source for formatting and was not returned during the piloting timeline. For the remainder of this section, the phrase all handouts will refer to all handouts excluding the eating intake form. Once the above steps were completed for each handout, all of the handouts were reevaluated again as a whole, first by myself and then by both occupational therapists on staff. Changes were made as necessary, and then all revised handouts were piloted with one to two eating clients. Clients only piloted handouts relevant to their needs. At most three handouts were piloted per client; however, most clients only piloted one handout. A total of five families were included in this piloting phase. Verbal feedback was received from parents/caregivers of children who piloted the handouts, and changes were made as necessary. A final needs assessment was conducted to ensure that the created handouts met all needs of the eating program and no additional handouts were necessary. This included informal interviews with both occupational therapists on staff, families that participated in the piloted handouts, and a final review of literature. No additional handouts were found to be needed. After all the handouts were thoroughly evaluated and the need for additional handouts was eliminated, the finalized handouts were implemented to eating clients. Prior to this implementation, I met with both occupational therapists on staff to provide education and training in the use of each handout, including the purpose and function. This ensured the understanding of all handouts and a consistency among therapists. Not every handout was A FEEDING AND EATING PROGRAM 24 implemented with every eating client; instead the OT staff chose only relevant handouts based off of each clients need. Given that multiple individuals implemented the handouts and that the handouts were chosen based on each clients need, the number of clients that participated in the implementation phase was not identifiable. Handouts were implemented for a total of three weeks. Handout Details There were a total of seven handouts created and implemented. Each handout was created to meet a need discovered during the needs assessment. The handouts as a whole were designed to increase participation and independence in eating for children with eating problems. The handouts included a session form, program information, eating problem facts, calorie boosters, food lists, food inventory checklist, homework form, and eating intake form. Session form. This form was designed to be used by the therapist during each eating session. It allowed the therapist to write down which foods were explored that day and how the foods were explored. This included options like: prepare, look, smell, touch, kiss, lick, chew, and if eaten it allows for rating. Originally the rating scale for eating included a one to five scale which represented two thumbs down, one thumbs down, thumbs in between, one thumbs up and two thumbs up; however, during the implementation phase of the handout, the therapists indicated that different rating scales were used based on each childs age and cognitive abilities. Therefore, the rating box was left blank to allow each therapist to write in the appropriate rating scale for each child. The session form allowed communication with parents/caregivers who were not present during the eating session. Additionally, it notified parents/caregivers of potential foods that were A FEEDING AND EATING PROGRAM 25 received as positive and could be implemented at home. This information was beneficial to aid carryover outside of the therapy setting. The session form handout can be found in Appendix B. Feeding and eating program. This handout was developed to educate parents/caregivers on Blooms eating program. It includes a summary of the program, information about typical duration and frequency, goals and objectives, and a description of children that might benefit from the program. During evaluations, parents/caregivers are given a lot of verbal information, and it is often difficult to retain all of this information. This handout gives a hardcopy of the answers to many frequently asked questions regarding eating therapy. Additionally, the handout could be reviewed by other caregivers not present at the evaluation and could be given to parents/caregivers considering the program that do not yet have a referral or evaluation. The feeding and eating program handout can be found in Appendix C. Eating problem facts. This handout was created to educate parents/caregivers on eating problems. It gives information on various topics including a brief overview of eating problems, statistics on eating impairments, differences in eating, feeding, and swallowing, description of what eating problems entail, and common pediatric conditions associated with eating problems. It explains how eating is a complex task and describes some of the effects eating problems have both on the family and the child. This handout serves to inform families on eating problems, and answer some potential questions that families might have regarding difficulties with eating. The eating problem facts handout can be found in Appendix D. Calorie boosters that pack a punch. This handout was reproduced from a handout developed by Klein, Delany & Medvescek (1994) for parents. The information is the same, but the formatting was changed and images were added. This handouts purpose is to provide parents/caregivers with information on foods that can be added into foods their child already eats A FEEDING AND EATING PROGRAM 26 to increase calorie intake. This information is important for all families that have children that need to gain weight but is essential for families trying to avoid having a feeding tube placed. The handout not only lists the foods that can be added and the calorie amounts, but includes ideas of how to make these additions. Foods on this handout include: butter, peanut butter, powdered milk, shredded cheese, sour cream, cream cheese, cooked egg yolk, heavy whipping cream, wheat cream, and avocado. The calorie boosters that pack a punch handout can be found in Appendix E. Food lists. This handout was developed from information from the SOS approach to feeding. The purpose is to educate parents/caregivers on different types of food. The handout is divided into boxes with each box containing the title of the food category and examples of the types of foods within this category. Additionally, some boxes include a category definition. Categories on the handout include thin liquids, thick liquids, hard munchables, meltable hard solids, soft cubes, soft mechanicals, hard mechanicals, and purees. The information on this handout gives parents/caregivers a clear understanding of food categories. This is important when a child is only cleared to eat a certain type of food or when a therapist wants the family to explore a specific category of food. The food lists handout can be found in Appendix F. Food inventory checklist. This handout is a checklist given to parents/caregivers during evaluation or the first eating session to allow them to identify foods that their child eats. Prior to the implementation of this handout, the therapist asked the parents/caregivers to report foods their child would eat in the following categories: fruits, vegetables, starch, protein, and smooth/purees. The therapist would think of examples of a type of food for each category reported. This handout has many food choices listed under each category. Additionally, there is an other section at the end of each category for the parent/caregiver to add foods. Having a list A FEEDING AND EATING PROGRAM 27 of foods provides parents/caregivers with several more food options that might help them remember a food they otherwise would have forgotten. Categories on the handout include fruits, vegetables, beans, breads, meats, beverages, dairy, condiments/dressings/dips, breakfast cereal/bars, pasta/Mexican, soups and snack/misc. By gaining this information, the therapist can better chain food during eating sessions. Additionally, this checklist could be used to show progress for a child as they add food to their preferred list. The food inventory checklist handout can be found in Appendix G. Homework form. This form was designed to be given to parents/caregivers to be utilized throughout the week at home and brought back to therapy each session. The form has a box that can be checked for each day the child is exposed to new food. It allows for the parent/caregiver to report difficult foods and successful foods, as well as questions or concerns to be discussed with the therapist. Additionally, there is a section where the therapist can provide suggestions or comments for the next week. This form was created to be simple and take very little time in hopes that parents will complete the form and bring it back to therapy. This form provides a way to track food exposures throughout the week and ensures carryover by holding parents accountable for the six days the child does not receive eating therapy. The homework form handout can be found in Appendix H. Eating intake form. This intake form was not piloted or utilized during the implementation phase because it was not returned from formatting during these timelines. This form was created to be given to parents/caregivers at or before evaluation. Prior to the creation of this handout, there was only a short section on eating in the general pediatric intake form. This new intake form is to be used along with the original pediatric intake form because the information in the original form is not duplicated within the eating intake form. A FEEDING AND EATING PROGRAM 28 The eating intake form provides the therapist with comprehensive information about the childs eating habits. It addresses goals, restrictions, eating therapy history, eating habits, mealtime routines, community eating settings, utensil use, drinking habits, and food preferences. The therapist is able to review the completed intake form or complete the intake form with the family and gain a good understanding of the childs overall eating habits and their potential needs. This assists the therapists in developing a more comprehensive and proficient treatment plan. The eating intake form handout can be found in Appendix I. Staff Development To promote staff development and ensure an understanding of each handout, I provided education and training to both occupational therapists on staff. The two therapists had seen the handouts a number of times during the evaluation and piloting phases, as both therapists had provided feedback. Therefore, both were already familiar with the content on each handout, but I wanted to confirm consistency among therapists. The education and training included meeting each therapist individually due to limited time in the therapists schedules. Education encompassed an overview of each handout including the purpose and clients that might benefit from each form. I had an open conversation with both therapists and answered all questions. At the end of each training session, the therapist being educated demonstrated verbal understanding of each handout. Since the staff being trained were both occupational therapists familiar with eating therapy, I felt confident that one training session with verbal understanding demonstrated at the end was sufficient to ensure adequate staff development regarding the use of each handout and the eating programs purpose as a whole. Leadership A FEEDING AND EATING PROGRAM 29 Leadership is a process of creating structural change wherein the values, vision, and ethics of individuals are integrated into the culture of a community as a means of achieving sustainable change (Braveman, 2016, p. 4). There are many opportunities for OT practitioners to assume leadership roles, including acting as an expert leading innovations (Braveman, 2016). By assuming the role of a leader when developing a new program, the leader can impact how staff members view not only the organization but also their work (Braveman, 2016). The DCE gives students a unique opportunity to serve as leaders of site mentors and other staff members. It is important for students to be mindful of the leadership skills they possess and what kind of leader they wish to be. For the many phases of this project, I chose to utilize the transformational leadership theory to guide me as a leader. In this theory, leaders achieve change by expressing the value associated with outcomes and by articulating a vison of the future resulting in commitment, effort, and improved performance on the part of subordinates (Braveman, 2016, p. 9). Aligning with the focus of early researchers of this theory, I primarily concentrated on building relationships with all staff members and expressing the significance of the program I was developing (Braveman, 2016). Braveman (2016) identifies charisma, individualized consideration, and intellectual stimulation as three characteristics of transformational leaders. Charisma is defined as instills, pride, faith, and respect in subordinates by transmitting a sense of mission that is effectively articulated (Braveman, 2016, p. 15). By successfully educating staff members on the purpose and potential benefits of the program I developed, I was able to gain staff member respect. Braveman (2016) explains leaders who possess the characteristic of individualized consideration delegates projects to stimulate the learning and growth of employees, coaches and teaches employees, and treats each employee with respect (p. 15). I included both occupational A FEEDING AND EATING PROGRAM 30 therapists on staff in a number of ways throughout the different phases of this project. I delegated specific tasks for them to complete and utilized each of them in different ways given their strengths and experiences. Braveman (2016) defines the final characteristic of intellectual stimulation as arouses followers to think in new ways and emphasizes problem-solving and the use of reason before acting (p. 15). Both therapists were well-educated in eating techniques, but I encouraged them to use other evidence-based strategies and challenged them to solve problems using different perspectives. There are many traits associated with being an effective leader that go beyond those outlined by the transformational leadership theory. Some of these include intelligence, integrity, openness, persistence, dominance, initiative, drive, self-confidence, sociability, honesty, cognitive ability, achievement (Braveman, 2016, p. 7). To ensure the success of this project I chose to utilize as many leadership skills as possible. I increased my knowledge not only in eating problems but in outcome measures and in developing and implementing programs. I chose a project of interest so that my drive and persistence would continue to grow. I remained open and honest with all staff members from the beginning. This included explaining what I thought was realistically able to be accomplished during my 14 weeks on-site. Four additional skills not mentioned on the above list I feel I utilized most often include: communication, flexibility, organization, and time management. I began this project as being flexible and open to how my project would start and have remained open and flexible as several things have changed and the project evolved. Communication was especially important in the implementation phase as I wanted to ensure consistency among OT staff. Open communication allowed me to identify and fix many problems with the program as they arose. With any project, organization and time management play a big role in success. I remained organized and A FEEDING AND EATING PROGRAM 31 effectively utilized my time allowing me to complete the implementation phase of this project in the timeline allowed. By utilizing all of the above traits, skills, characteristics, and theory guidance I was able to effectively assume the role as a leader while successfully implementing the eating program. Discontinuation and Outcome Phase Program Evaluation Once all identified problems were addressed after the implementation phase, I began the formal program evaluation. I repeated survey methodology in the form of a paper questionnaire to collect feedback from parents on the new eating program. This questionnaire was the same one given previously and was utilized to measure whether or not the program was beneficial. Similar to before, the questionnaire was distributed to parents/caregivers of eating therapy clients at Bloom, ages 0-18 with a variety of diagnoses or impairments. All families that received the pre-test were also given the post-test. However, the questionnaires were returned anonymously, so it is unknown if the same families completed both the pre-test and post-test questionnaires. For this reason, individual questionnaires were not compared, but instead the pre-test as a whole was compared to the post-test as a whole. Thirteen questionnaires were distributed and seven were returned. Project outcomes. The following results were demonstrated after comparing the pre-test questionnaire with the post-test questionnaire; therefore, all outcomes are parent/caregiver reported. There was an increase in the satisfaction of both the childs eating (pre-mean: 1.89; post-mean: 3.29) and weight (pre-mean: 2.78; post-mean: 3.43). One mom reported: A FEEDING AND EATING PROGRAM 32 We havent had to use our g-tube in several weeks! Without the help of Bloom, we wouldnt be where we are today. There were times we didnt see an end in sight but now there is light at the end of the tunnel. There was a decrease in the number of times something special needed to be done to help the child eat (pre-mean: 4.00; post-mean: 3.57), as well as a decrease in the childs eating habits negatively impacting daily routines (pre-mean: 4.11; post-mean: 3.29). One parent stated, [my child] is now confident to eat lunch with his peers at school. There was an increase in the variety (pre-mean: 1.78; post-mean: 2.57) and number of foods a child eats (pre-mean: 1.78; post-mean: 2.57). There was an increase in the willingness of the of the child to try new foods (pre-mean: 1.89; post-mean: 3.00). One mom recounted [my child] is a very tricky kid, although, he has not reached the feeding goal we all wanted, he is trying new foods. Another parent described, [my child] is now exploring foods with little to no prompting. Finally, there was an increase in satisfaction of Blooms feeding therapy (pre-mean: 4.56; post-mean: 5.00) and an increased likeliness to recommend the feeding program (pre-mean: 4.78; post-mean: 5.00). Parents/caregivers reported that this program: helped their child feel more confident, eased their child slowly into trying new foods, and taught education and tools to help their child succeed with food. One parent responded I am thankful for everything that Bloom has done for [my child]. See Appendix J for the full list of mean, median and mode of the pre-test/post-test questionnaires. Societal Need Eating problems affect up to 50% of typically developing children (Phalen, 2013) and up to 80% of children with atypical development (Fishbein et al., 2014). Through my DCE, I addressed the societal need of pediatric eating problems that have long-lasting effects on not only A FEEDING AND EATING PROGRAM 33 the child but also the family. I addressed this societal need with Blooms population by implementing the eating program. Each handout I created served a specific purpose including educating parents/caregivers, allowing therapists to get a greater understanding of a childs eating habits so that a better treatment plan could be developed, and establishing accountability for parents/caregivers between therapy sessions. All of this together was designed to increase participation and independence in mealtime for children with eating problems. This will in return ideally decrease the effects of eating problems for both the child and the family, thus reducing the societal challenge of pediatric eating problems. Quality Improvement To ensure continuous quality improvement of the project, evaluations and adjustments to the program continued past the evaluation phase, through the implementation phase, and into the discontinuation and outcome phase. During the implementation phase, OT staff members and families were encouraged to discuss any issues or problems that arose. A few minor suggestions were discussed and implemented. This included changing the rating system used on the session handout. The implementation phase continued with no further issues identified. After the implementation phase, I again met with OT staff members to discuss any remaining issues that arose; however, no issues were identified. After the program was formally evaluated, I met one final time with OT staff to ensure concluding problems and suggestions were addressed; however, no issues were identified. Sustainability Sustainability of the program is probable given that both occupational therapists on staff are comfortable with the program and have been using it daily for approximately five weeks. Additionally, I have completed a number of steps to ensure sustainability, such as that I trained A FEEDING AND EATING PROGRAM 34 both therapists on the handouts prior to implementation to ensure consistency. Also I not only made the electronic version of all handouts available to OT staff members, but I created hard copies and placed them in an easily accessible location. By seeing the implementation of the program through, I was able to fix many problems which means additional challenges are less likely to occur after I leave Bloom. At the end of the DCE, the intake form was still not returned from formatting. I met with one of the owners to ensure her understanding and responsibility in implementing this handout and addressing issues if they arise, as I will no longer be on-site. She verbally acknowledged this commitment and stated she would follow-through with this handout once returned. Since Bloom is a small but growing organization I wanted to ensure sustainability of the program even as Bloom grows and new OT staff are hired. To do this, I created a short PowerPoint presentation that could be shown to new employees in the future. The presentation is a voice-over so the new employee can independently learn about Blooms eating program. The presentation reviews the purpose and function of each handout. Hopefully this presentation will ensure sustainability of the eating program when/if new staff members are hired. Overall Learning Throughout this entire experience I learned a great deal that will help prepare me to become a better future OT practitioner. This is true for both the implementation of this program and the development of my clinical skills. I have broadened my knowledge and experience with the entire pediatric population, especially related to children with eating problems. I have increased my exposure to many diagnoses/impairments and have learned strategies to address challenging behavior in children, as well as approaches to include families into treatment A FEEDING AND EATING PROGRAM 35 sessions. I have learned how to effectively conduct a needs assessment, develop and implement a program, and how to evaluate outcomes of that program. In addition to growing from many of my own created experiences, I have been able to expand and improve my professional characteristics by learning from colleagues. I observed effective communication, necessary flexibility, the benefits of teamwork, effectiveness of leading by example, and the importance of building rapport, and utilizing evidence to develop support and commitment from clients. I learned two strategies for communicating including effective listening and changing the communication approach based on the needs of the person with whom I am interacting. Whenever there are multiple individuals interacting together, everyone must remain open and flexible in order to get tasks accomplished; however, I learned that there are times when you should remain committed to your opinion. Effective communication and flexibility lead to good teamwork. It is difficult to accomplish tasks as a group without teamwork. Everyone must be willing to fulfill their own unique roles. There are many different leadership theories and many different ways an individual can choose to lead. I observed a few different leading strategies and found that leading by example was the most effective in this type of setting. Lastly and possibly most important to my growth as a new practitioner, is strategies to gain support and commitment from clients. With most therapy settings, the time spent outside of therapy greatly outnumbers the time spent in therapy; therefore, it is extremely important for clients to buy into what they are being asked to do. I learned two valuable ways of doing this. The first is building rapport, and the second is utilizing evidence-based practice. I observed and experienced both of these strategies making an impact on the effects of therapy for clients. Effective Interactions A FEEDING AND EATING PROGRAM 36 Throughout this DCE, I had the opportunity to interact in a number of ways with many different individuals in addition to the clients with eating problems. Taylor (2008) emphasizes that the success of OT depends on the exchange of thoughts and feelings, also known as effective communication. Communication spans over many social contexts, can be verbal or nonverbal, and can include the sharing of facial expression, posture, body movements, and other body language, informal gestures, sounds, made-up language, or formalized language such as sign and spoken language (Taylor, 2008, p. 157). I engaged with individuals using verbal and nonverbal communication, as well as written communication. With all face-to-face communication, I utilized positive nonverbal interactions. I remained aware of what I was potentially saying with my body and attempted to ensure my demeanor was true to what I was trying to communicate. Sometimes communication involves only the OT practitioner and the client, while other times it includes many persons (Taylor, 2008). Although possible, OT practitioners rarely engage with clients in complete isolation (Taylor, 2008, p. 209). This is because the client and therapist usually come into contact with at least one of the following: friends, other clients, other professional or family members including parents, caregivers, partners, and spouses (Taylor, 2008). At Bloom, I interacted with the client and the clients family including parents, caregivers, siblings, and occasionally extended family such as aunts/uncles or grandparents. Contact with family members is extremely common in the pediatric population (Taylor, 2008). At a minimum, interactions occur with parents and caregivers when transporting the client to and from therapy, when the therapist provides progress reports or assigns homework, or when the therapist makes other recommendations for resources or equipment (Taylor, 2008, p. 209). Practitioners might request more than minimal interaction so that carryover can occur in non-therapy settings (Taylor, 2008). I encountered both types of interactions with A FEEDING AND EATING PROGRAM 37 parents/caregivers at Bloom. Oftentimes kids showed better participation in eating therapy when their parents were not present. For this reason, most parent/caregiver interactions were conducted during transportation. Before therapy sessions, I always met with parents to discuss new concerns or recent information. After therapy sessions, I always discussed what was accomplished during therapy and things that could be done at home. Discussions before and after sessions were typically informal and verbal. Oftentimes after the sessions, I included written communication that described what was accomplished in detail and homework to be completed outside of therapy. During some sessions it was beneficial to have parents/caregivers present during some or all of the treatment. This occasionally included guiding the parents/caregivers in leading the treatment session. This was especially true for clients who were progressing well and would soon be discharged from therapy. By allowing parents/caregivers to lead the session, with corrections as needed, they were able to gain skills and confidence that would lead to success at home following discharge. Taylor (2008) describes that the complexity of interactions rise as more persons are added to the interaction. Practitioners must address interactions intentionally with caution and expertise in order to support therapy goals and prevent maladaptive dynamics that could interfere with therapy outcomes (Taylor, 2008). A childs performance can be a sensitive subject for parents, and the way information is presented is extremely important. This was difficult for me at first, so I reviewed evidence and spoke to other site therapists to discuss their approaches. I learned that it is essential to always highlight positive information about the client and to frame negative information in a way that is easily received. Over the past several weeks, I have improved my ability to effectively communicate with parents/caregivers. A FEEDING AND EATING PROGRAM 38 OT practitioners encounter many different healthcare professionals through interdisciplinary meetings, consultations, supervision, and co-treatments (Taylor, 2008). OT practitioners collaboration can include the following healthcare professionals: other OT practitioners, physical therapists, speech language pathologists, physicians, recreation therapists, art therapists, psychologists, nursing professionals, social workers, aides, technicians and many more (Taylor, 2008). At Bloom, my interactions occurred with colleagues and other healthcare providers including clients personal nursing staff, applied behavioral analysis (ABA) therapists, occupational therapists, physical therapists, speech language pathologists, the office manager, and the clinic owners. Given the pediatric population age range, I had no interaction between significant others of clients. Additionally, given the purpose of my DCE and my site, I had limited interactions with the community and public. Collaboration with other healthcare professionals can include a short-term verbal exchange of client information or long-term co-treatment relationships (Taylor, 2008). Regardless of the type, both professionals must remain open to learning about and incorporating the others unique point of view for successful collaboration to occur (Taylor, 2008, p. 281). At Bloom, the short-term verbal exchange of client information occurred for each session between parents, caregivers, personal nursing staff, ABA therapists and anyone else who came with the child to therapy. This exchange also occurred occasionally between myself and one of the speech language pathologists or physical therapists if they were treating right after me or vice versa. Although I filled in on a few long-term co-treatment sessions, I never established this long-term interaction for myself. Additionally, interactions on the childs behalf occurred with insurance companies and physicians but this was typically completed by one of the co-owners or the office manager. I A FEEDING AND EATING PROGRAM 39 would interact verbally with one of the co-owners or the office manager who would then interact with the others verbally over the phone or formally through fax or e-mail. Leadership and Advocacy Skills Through the many phases of this DCE, I have utilized and developed many professional, leadership and advocacy skills. Professional and leadership skills. This project has allowed me to increase my knowledge and experience with eating problems, outcome measures, developing and implementing programs, as well as allowed me to use and grow my skills in communication, flexibility, organization, and time management. Since this experience has been self-directed, I have developed confidence with my initiation skills and functioning independently. By taking the lead role in developing and implementing this program, I developed my leadership and delegating skills. I increased my knowledge and experience in professional writing and research. I improved my awareness of other disciplines including physical therapists and speech language pathologists by working alongside colleagues in the clinic, as well as ABA therapists, child psychologists, and lactation consultants through communication with them outside of the clinic. Through the course of this DCE, I had many opportunities to grow and develop my professional and leadership skills. This growth among these skills will aid in my future development into an OT practitioner. Advocacy skills. In the third edition of the Occupational Therapy Practice Framework (OTPF), advocacy is listed as a type of intervention and is defined as efforts directed toward promoting occupational justice and empowering clients to seek and obtain resources to fully participate in daily life occupations (AOTA, 2014a, S30). Advocacy supports health, wellbeing and occupational participation at the individual or system level (AOTA, 2014a, S30). A FEEDING AND EATING PROGRAM 40 During the DCE, I had the opportunity to advocate for the profession of OT, my clients, my program, and myself in learning and observing things. OT profession. I advocated for the OT profession to both families of clients and clinic staff members. I educated both parties on the purpose of OT and its broad scope of practice. As I gained experiences with advocating this to individuals, I developed different elevator speeches based on the recipient of the education. Additionally, I had a few occurrences where I was able to advocate for OT over the phone to different persons including nursing staff, psychologists, lactation consultants, and office managers from potential referral sources. Clients. I advocated for and with many of my clients at Bloom including those with and without eating difficulties. I educated and collaborated with families to ensure clients received the best care possible. I educated families on how they could advocate for their child to receive reasonable accommodations in order to better participate in occupations. This included having discussions with families about community-based services, insurance restrictions, and IEPs within the school systems. I occasionally advocated for the services my client needed to their family, referral offices, or reimbursement sources. This included verbal conversations with families and typically written documentation, such as progress notes, to referral and reimbursement sources. Although I did not have the opportunity to formally raise public awareness about the impact of eating problems, I did often have to opportunity to discuss this with random individuals whenever asked what I was doing with my schooling. Additionally, the eating fact handout serves as a great advocacy handout for raising awareness of this problem and the potential impacts caused to children and families. Eating program. I advocated for the program I developed to staff members and families of clients. After developing the program, I educated and trained both occupational therapists on A FEEDING AND EATING PROGRAM 41 staff to advocate for its use. Additionally, I collaborated with both therapists to implement the program and advocate its use to families. This mainly consisted of educating and training parents/caregivers on the homework handout and the importance of carryover outside of the therapy setting. Myself. In order to gain the most out of this DCE, I advocated for myself. This is true for both my knowledge and experience. I asked staff members for opportunities that would be beneficial for me. This included asking to observe additional treatments/evaluations and when comfortable asking if I could perform some of the treatments/evaluations. This was in addition to my normal caseload. Advocating for myself in this way allowed me to grow and maintain a just right challenge. I was challenged in my growth and knowledge but was not overwhelmed. This has led to me growing as a professional and as a future practitioner. Summary Throughout this experience I have accomplished many things. I have evaluated, interpreted, and resolved Blooms needs by creating and implementing the eating program. I was able to expand Blooms eating therapy, increase client satisfactions, and improve parent reports of their childs participation and independence with eating. I have developed many skills and abilities, and have grown as a professional and a future practitioner. 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Marchi, M., & Cohen, P. (1990). Early childhood eating behaviors and adolescent eating disorders. Journal of the American Academy of Child & Adolescent Psychiatry, 29(1), 112-117. Martorana, P., Bove, K., & Scarcelli, M. (2008). Families and pediatric feeding problems. Exceptional Parent, 38(10), 58-59. McCaffrey, P. (2013). Anatomy of the swallow. Retrieved from https://www.csuchico.edu/~pmccaffrey/syllabi/SPPA342/342unit3.html A FEEDING AND EATING PROGRAM 47 McLeod, S. A. (2014). The interview method. Retrieved from https://www.simplypsychology.org/interviews.html National Behavioral Support Service. (2011). Occupational therapy in the school setting. Retrieved from https://www.nbss.ie/sites/default/files/publications/ot_leaflet_revised_2_0.pdf. National Institute on Deafness and Other Communication Disorders. (2018). Voice, speech and language: Dysphagia [Fact Sheet]. Retrieved from https://www.nidcd.nih.gov/sites/default/files/Documents/health/voice/NIDCDDysphagia.pdf Nichols, A., Wasemann, C., Coatie, D., Moon, E., & Weller, J. (2018). Parental perceptions: Raising a child with a feeding and eating disorder. SIS Quarterly Practice Connections, 3(2), 24. Pedersen, S. D., Parsons, H. G., & Dewey, D. (2004). Stress levels experienced by the parents of enterally fed children. Child: Care, Health and Development, 30(5), 507-513. Pendleton, H. M. & Schultz-Krohn, W. (Eds.) (2017). Pedrettis occupational therapy: Practice skills for physical dysfunction (8th ed.). St. Louis, MO: Elsevier Mosby. Phalen, J. A. (2013). Managing feeding problems and feeding disorders. Pediatrics in Review, 34(12), 549-557. Resnicow, K., Davis-Hearn, M., Smith, M., Baranowski, T., Lin, L. S., Baranowski, J., ... & Wang, D. T. (1997). Social-cognitive predictors of fruit and vegetable intake in children. Health Psychology, 16(3), 272. Scaffa, M. E., & Reitz, S. M. (2013). Occupational therapy community-based practice settings. FA Davis. A FEEDING AND EATING PROGRAM 48 Sharp, W. G., Jaquess, D. L., Morton, J. F., & Herzinger, C. V. (2010). Pediatric feeding disorders: A quantitative synthesis of treatment outcomes. Clinical Child and Family Psychology Review, 13(4), 348-365. Shumway-Cook, A., & Woollacott, M.H. (2007). Motor control: Translating research into clinical practice (3rd ed.). Philadelphia: Lippincott Williams & Wilkins. Silverman, A. H., Kirby, M., Clifford, L. M., Fischer, E., Berlin, K. S., Rudolph, C. D., & Noel, R. J. (2013). Nutritional and psychosocial outcomes of gastrostomy tubedependent children completing an intensive inpatient behavioral treatment program. Journal of Pediatric Gastroenterology and Nutrition, 57, 668672. Skinner, J. D., Carruth, B. R., Bounds, W., & Ziegler, P. J. (2002). Children's food preferences: A longitudinal analysis. Journal of the American Dietetic Association, 102(11), 16381647. Skinner, J., Carruth, B. R., Moran III, J., Houck, K., Schmidhammer, J., Reed, A., ... & Ott, D. (1998). Toddlers food preferences: Concordance with family members preferences. Journal of Nutrition Education, 30(1), 17-22. Sullivan, S. A., & Birch, L. L. (1990). Pass the sugar, pass the salt: Experience dictates preference. Developmental Psychology, 26(4), 546. Taylor, R. (2008). The intentional relationship: Occupational therapy and use of self. Philadelphia, PA: F.A. Davis. Toomey, K. (2002). Feeding strategies for older infants and toddlers. Pediatric Basics, 311. van der Gaag, E., & Mnow, M. (2014). Hospitalization can correct behavioral feeding disorders in children by resetting the pedagogic climate. Open Journal of Pediatrics, 4(02), 135. A FEEDING AND EATING PROGRAM 49 Wolf, L.S., & Glass, R.P. (1992). Feeding and swallowing disorders in infancy assessment and management. Tucson, AZ: Therapy Skill Builders. A FEEDING AND EATING PROGRAM 50 Appendix A Finalized Parent Eating Questionnaire A FEEDING AND EATING PROGRAM 51 Appendix B Session Form Handout A FEEDING AND EATING PROGRAM 52 Appendix C Feeding and Eating Program Information Handout A FEEDING AND EATING PROGRAM 53 Appendix D Eating Problem Facts Handout A FEEDING AND EATING PROGRAM 54 A FEEDING AND EATING PROGRAM 55 Appendix E Calorie Boosters that Pack a Punch Handout A FEEDING AND EATING PROGRAM 56 Appendix F Food Lists Handout A FEEDING AND EATING PROGRAM 57 A FEEDING AND EATING PROGRAM 58 Appendix G Food Inventory Checklist Handout A FEEDING AND EATING PROGRAM 59 A FEEDING AND EATING PROGRAM 60 Appendix H Homework Form Handout A FEEDING AND EATING PROGRAM 61 Appendix I Eating Intake form A FEEDING AND EATING PROGRAM 62 A FEEDING AND EATING PROGRAM 63 A FEEDING AND EATING PROGRAM 64 A FEEDING AND EATING PROGRAM 65 A FEEDING AND EATING PROGRAM 66 Appendix J Pre-test/Post-test Mean, Median and Mode Question Pre-mean Post-mean Pre-median Post-median Pre-mode Post-mode 1 1.89 3.29 2.00 3.00 2.00 4.00 2 2.78 3.43 3.00 3.00 2.00 5.00 3 4.11 3.29 4.00 4.00 4.00 4.00 4 1.78 2.57 2.00 2.00 1.00 2.00 5 4.00 3.57 4.00 4.00 4.00 4.00 6 1.78 2.57 2.00 3.00 2.00 3.00 7 1.89 3.00 2.00 3.00 2.00 4.00 8 4.78 5.00 5.00 5.00 5.00 5.00 9 4.56 5.00 5.00 5.00 5.00 5.00  ...

... Running head: DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY Development and Implementation of a Preoperative Therapy Program for Individuals Undergoing Total Joint Surgical Procedures Trevor D. Manspeaker April 30th, 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. Lucinda Dale, EdD, OTR, CHT, FAOTA DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY A Capstone Project Entitled Development and Implementation of a Preoperative Therapy Program for Individuals Undergoing Total Joint Surgical Procedures Submitted to the School of Occupational Therapy at the University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. By Trevor D. Manspeaker Occupational Therapy Doctoral 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 DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 3 Abstract Following the completion of a needs assessment at Saint Joseph Regional Medical Hospital, an increase of medical spending, a lack of patient expectation fulfillment, and the decreased functional outcomes postoperatively were all identified as problems impacting the joint replacement population. The purpose of the doctoral capstone experience was to develop and implement a preoperative therapy program to address the above needs. Cabilan, Hines, and Munday (2016) defined pre-habilitation as "the preoperative optimization of physical functionality to enable the individual to maintain a normal level of function during and after surgery" (p. 224). During the initial development of the program, a preoperative therapy team was created to begin data collection and resource creation. In conjunction with the therapy staff, the team created multiple educational handouts corresponding to preoperative exercises, adaptive devices, surgical expectations, and home modifications. Data were collected to assess the financial impact a preoperative therapy program could have at this site. Data demonstrated an annual saving of 118,000 dollars due to decreased post-acute care utilization. Following the development of the program, the team began the implementation phase by completing chart reviews. Implementation trials yielded positive results indicating improved postoperative outcomes and satisfaction fulfillment. The occupational therapy (OT) student presented the program to administration staff, and it was accepted for implementation to care. Throughout the experience, the OT student utilized leadership and advocacy skills to complete objectives. The experience provided great opportunities for continued learning and professional growth. DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 4 Development and Implementation of a Preoperative Therapy Program for Individuals Undergoing Total Joint Surgical Procedures According to the Centers for Disease Control (2019), arthritis is the leading cause of disability. The Centers for Disease Control estimates that 23% of adults have arthritis, with the most common form being osteoarthritis (Centers for Disease Control, 2019). Osteoarthritis affects joints causing pain and decline in functional abilities over time. Total joint replacement surgery has emerged as one of the leading treatments for end-stage arthritis of the knee and hip. Kurtz, Ong, Lau, Mowat, and Halpern (2007) examined the projections for primary hip and knee arthroplasties in the United States from 2005 to 2030. The researchers projected primary total hip arthroplasties to increase by 174%, and primary total knee arthroplasties to increase by 673% (Kurtz et al., 2007, p.782). As the total number of arthroplasties performed increases, so will healthcare costs (Press, Rajkumar, & Conway, 2016, p. 131). These two factors indicated a need for alternative methods in reducing healthcare costs associated with total joint procedures. The purpose of this doctoral experience capstone was to develop and implement a preoperative therapy program for individuals undergoing total joint surgical procedures in an acute-care setting. The development of this program aimed to reduce post-acute healthcare costs, improve postoperative outcomes and expectations, decrease the length of stay (LOS), and decrease hospital readmissions. According to Bonnel and Smith (2018), when developing a project, frameworks are necessary for guidance and enveloping important concepts and boundaries. Two frameworks guided the development and implementation of the doctoral capstone experience. The first framework utilized in this project was the person-occupation-environmentperformance model. The person-occupation-environment-performance model analyzes the DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 5 person, the environment, and occupation to provide a systematic view of the client and his or her occupational performance (Cole & Tufano, 2008). This systematic view considers the interaction among each of the components through a collaborative relationship between practitioner and client. The person component contains the physiological, psychological, motor, sensory/perceptual, cognitive, and spiritual components of the individual (Christiansen, Baum, & Bass, 2015). The OT student utilized these components to guide each facet of the program, from screening to discharge, to ensure comprehensive care and overall understanding of the client's strengths and weaknesses before surgery. The environment encompasses cultures, social supports, social determinants, social capitals, physical environments, natural environments, health educations, public policies, and assistive devices and technologies (Christiansen et al., 2015). Individuals undergoing total joint surgical procedures required adaptive devices, home modifications, and preoperative environmental changes to ensure healthy postoperative outcomes. This project included evaluations and interventions that ensured an individual's environment enhances postoperative outcomes. The occupation component is composed of activities, tasks, or roles (Christiansen et al., 2015). Due to the systematic nature of this model, occupation can affect the person and environment. Throughout this project, occupation was the mechanism of change when providing interventions to patients. The last component of this model is occupational performance. Occupational performance is the culmination of each of the listed components. The patients occupational performance served as an outcome measure for the effects of a preoperative therapy program. The second framework utilized was biomechanical/rehabilitation frame of reference. This frame of reference analyzes range of motion, kinematics, torque, strength, and endurance (Cole DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 6 & Tufano, 2008, p. 167). This frame of reference utilizes assessments aimed at identifying performance components such as movements, strength, and endurance (Cole & Tufano, 2008). Assessing these components helped identify impairments that limited occupational performance. For the preoperative program to be successful, there needed to be proper identification of risk factors contributing to increased post-acute utilization, decreased postoperative outcomes, and increased LOS. Yu, Garvin, Healy, Pellegrini, and Iorio (2015) identified physical deconditioning as a risk factor for post-acute care utilization (p. e68). The OT student utilized this approach to provide interventions aimed at improving strength, endurance, and mobility for improved occupational performance postoperatively. Literature Review The Centers for Medicare & Medicaid Services (CMS) are transitioning to alternative payment models, such as bundled payments for health care services (Press et al., 2016). Press et al. (2016) reported these bundled payments as the link among unconnected payments for clinical services provided during an episode of care. An episode of care for a complete joint replacement begins with hospitalization for hip or knee replacement and ends 90 days after discharge (Press et al., 2016). Snow et al. (2014) found the average cost of an episode of care for a total joint replacement to be 19,818 dollars. Furthermore, the researchers found the bulk of spending to be centered around hospitalization (10,033 dollars), skilled nursing facilities (3,090 dollars), and home health agencies (1,645 dollars) (Snow et al., 2014, p.5). In conjunction with the increasing number of total joint replacement surgeries performed, health care providers are experiencing increased overall spending. In order to decrease spending, alternative treatment measures must be explored (Porter, 2009). DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 7 To reduce health care costs effectively, understanding which individuals have the highest risk for longer hospitalization and skilled nursing facility placement was crucial. Yu et al. (2015) identified risk factors for complications associated with total joint arthroplasties. The researchers produced a list of modifiable factors (obesity, diabetes, staphylococcus, smoking, venous thromboembolic disease, cardiovascular disease, neurocognitive problems, psychological problems, behavioral problems, physical deconditioning, comorbidities affecting ambulation) (Yu et al., 2015). The researchers concluded that an occupational therapist analyzing these modifiable factors could improve pain, physical function, quality of life, and reduce hospital readmissions (Yu et al., 2015). Similarly, Mednick, Alvi, Krishnan, Lovecchio, and Manning (2014) investigated factors contributing to increased readmissions following primary total hip arthroplasties. There is a greater risk for readmission in individuals who are higher in age, higher in body mass index, and have multiple comorbidities (Mednick et al., 2014). Additionally, Mednick et al. (2014) concluded that higher readmission rates correspond with more complications postoperatively. An alternative method that can be successful in reducing these costs is preoperative care, i.e., pre-habilitation. Cabilan et al. (2016) defined pre-habilitation as "the preoperative optimization of physical functionality to enable the individual to maintain a normal level of function during and after surgery" (p. 224). Researchers have demonstrated promising results for reduction of post-acute care utilization and improved postoperative outcomes. Snow et al. (2014) demonstrated a 29% reduction in post-acute care utilization when individuals engaged in preoperative physical therapy. Furthermore, Snow et al. (2014) found the total cost reduction to be around 1,215 dollars compared to individuals who received no preoperative therapy. Soeters et al. (2018) found that preoperative therapy resulted in fewer physical therapy visits during the DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 8 acute stay, improving readiness for discharge. Soeters et al. (2018) concluded that preoperative therapy could assist in reducing the LOS, but alone cannot decrease the LOS. Cabilan et al. (2016) examined the effect of pre-habilitation can have with pain and quality of life among individuals receiving total hip and knee arthroplasties. Cabilan et al. (2016) found zero improvements in pain scores or quality of life for individuals engaging in preoperative therapy. However, Cabilan et al. (2016) concluded that individuals participating in preoperative therapy had a significant reduction in admission to an acute care facility. Soares, Nucci, Silva, and Campacci (2013) examined the pulmonary benefits of engaging in preoperative therapy. The researchers concluded that individuals participating in preoperative therapy had increased inspiratory strength and respiratory muscle endurance (Soares et al., 2013). Additionally, Soares et al. (2013) found improved functional independence measures and increased 6-minute walk test distances among preoperative patients. Tilbury et al. (2016) found a substantial number of patients dissatisfied with expectation fulfillment following the total knee arthroplasty. Tilbury et al. (2016) indicated that future programming should include specific educational materials addressing realistic expectations to improve patient satisfaction postoperatively. Tilbury et al. (2018) investigated the connection between preoperative expectations and postoperative outcomes. Tilbury et al. (2018) found that a patient's expectations were consistently part of the predictions for postoperative function and pain. Tilbury et al. (2018) concluded that preoperative programs could be effective in improving postoperative outcomes when expectations are part of the preoperative plan. Similar to the previous two studies, Palazzo et al. (2014) examined patient satisfaction one year after the total hip arthroplasty. The researchers concluded that preoperative predictors of satisfaction were improved mental well-being and optimistic surgeon expectations (Palazzo et al., 2014). DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 9 Additionally, the researchers found the fulfillment of expectation as the main determinant of satisfaction (Palazzo et al., 2014). Palazzo et al. (2014) reported that programs need to address postoperative function and pain relief to achieve patient satisfaction. The findings in this doctoral capstone experience contribute to the literature. Significant findings associated with the effectiveness of preoperative therapy aided in the determination of whether preoperative therapy could decrease health care spending, improve postoperative outcomes and expectations, decrease the LOS, and decrease hospital readmissions. Screening & Evaluation The needs assessment aimed to reveal current procedural operations at the site, as well as available opportunities for change and growth. Multiple staff members completed the needs assessment including occupational therapists, physical therapists, speech therapists, nurses, administrators, and physicians. The needs assessment included questions about patient care, adequate programming in specific departments, perceived benefits of implementing preoperative programs, barriers preventing program development, and specific needs for departments. The results of the needs assessment indicated a great need for a preoperative therapy program. Currently, there are two programs available for patients receiving joint surgeries. The first program is a pre-surgical testing department. The second program is a joint class. When asked, the nursing staff indicated a lack of therapy presence in the two programs. Additionally, the nursing staff reported a decrease in volume due to decreased physician referrals to the programs. There are currently four full-time physical therapists, three full-time occupational therapists, and two full-time speech therapists working in the hospital. Therapy staff reported that the major barriers to therapist involvement in program development are time constraints and costs. Therapy staff indicated there is a need for more therapy presence in the preoperative setting. Four major DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 10 physician groups serve Saint Joseph Hospital. When interviewed, physicians indicated the need for a program specific to their instructions. Additionally, physicians were hesitant to send their patients to the joint class due to fear of the specific instructions not being addressed. The administration expressed a desire for a preoperative program that could decrease health care costs while remaining within the hospitals budget. There is currently a lack of programs that involve collaboration among nursing, therapy, and physicians. The lack of collaboration has resulted in an overall decrease in preoperative care and education. A preoperative therapy program that incorporates all staff members would alleviate this issue, subsequently resulting in improved quality of care and decreased health care costs. Established evaluation methods must be used to analyze a patient's occupational performance and participation. Yu et al. (2015) produced a list of modifiable factors (obesity, diabetes, staphylococcus, smoking, venous thromboembolic disease, cardiovascular disease, neurocognitive problems, psychological problems, behavioral problems, physical deconditioning, comorbidities affecting ambulation). An occupational therapist analyzing these modifiable factors could improve pain, physical function, quality of life, and reduce hospital readmissions (Yu et al., 2015). The reduction of these factors could contribute to improved occupational performance and participation in patients enrolled in the preoperative program. Also, Mednick et al. (2014) found that individuals who were higher in age, had a higher body mass index, and increased comorbidities were more likely to be readmitted. Mednick et al. (2014) concluded that higher readmission rates correspond with more complications postoperatively following a total hip procedure. These risk factors contributed to the selection of four tools to evaluate and screen patients enrolled in the preoperative therapy program. DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 11 The first tool selected was the Knee Injury and Osteoarthritis Outcome Score Jr. The Knee Injury and Osteoarthritis Outcome Score Jr. is an additional tool preferred by Medicare as an outcome measure for individuals in the complete joint replacement bundle (Drummond-Dye & Smith, 2016). Drummond-Dye and Smith (2016) indicate the completion of the Knee Injury and Osteoarthritis Outcome Score Jr. provides additional points that contribute to the annual quality score for the hospital system. Collins et al. (2016) found the Knee Injury and Osteoarthritis Outcome Score Jr. had adequate content validity, internal consistency, test-retest reliability, construct validity, and responsiveness for age and condition-relevant subscales. An occupational therapist utilizing the questions contained in the Knee Injury and Osteoarthritis Outcome Score Jr. can examine the quality of the knee and an individuals quality of life. The tool served as a screening tool to determine the risk for occupational deprivation. The second tool selected was the Hip Injury and Osteoarthritis Outcome Score Jr. The Hip Injury and Osteoarthritis Outcome Score Jr. is an additional screening tool preferred by Medicare that could contribute to the annual quality score for the hospital system (DrummondDye & Smith, 2016). Lyman et al. (2016) found the Hip Injury and Osteoarthritis Outcome Score Jr. had high internal consistency, moderate to excellent external validity, and very high responsiveness. Additionally, the researchers concluded the Hip Injury and Osteoarthritis Outcome Score Jr. to be a relevant and efficient tool for analyzing an individuals hip health (Lyman et al., 2016). This measure served as a risk-screening tool to examine an individuals hip quality and his or her daily occupations and routines. The third tool selected was the Patient Reported Outcome Measurement Information System. The Patient Reported Outcome Measurement Information System is an accepted global measure of patient function, and a hospital system can submit scores for additional quality score DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 12 points (Drummond-Dye & Smith, 2016). The results of this tool identify the current occupational participation and performance of an individual. The fourth tool was the Blaylock Risk Assessment Screening Score (BRASS). The BRASS is used to identify patients who will require complex discharge needs. Cunic, Lacombe, Mohajer, Grant, and Wood (2014) found a positive correlation between the BRASS and increased LOS. Additionally, Cunic et al. (2014) concluded that higher BRASS scores increased the risk of complex discharge. The BRASS tool provided a deeper analysis of the functional capabilities of the patients before their surgical procedure. This datum guided the interventions and facilitated the best care for patients. The combination of these four tools provided a comprehensive and client-centered approach to screening and evaluation. By utilizing the four tools, the OT analyzed risk factors associated with joint procedures and identified that these risk factors might decrease post-acute care utilization, improve postoperative outcomes, reduce the LOS, and reduce hospital readmissions for all patients undergoing joint replacement procedures. The screening and evaluation methods used in this study are similar to the methods used in traditional areas of practice. In an acute care setting, an occupational therapist evaluates the patients functional status for an understanding of what additional services are needed. The occupational therapist in the preoperative program completes the evaluation to reach a similar goal. The screening and evaluation methods are different from a traditional area of practice due to the timing of the evaluation. An evaluation before injury changes the purpose of therapy from rehabilitation or remediation to prevention. The evaluation and screening methods used in the preoperative program are similar to an emerging area of practice. In an emerging area of practice, therapy services have not been DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 13 implemented and used over a longer period. Thus, therapy services are ever changing and becoming defined. Although the interventions performed will be traditional, the timing of evaluation and screening aligns more with an emerging practice area. The OT student aimed to analyze functional status in a more traditional sense, such as activities of daily living. An occupational therapist in an emerging area of practice evaluates more specific skills or occupations that are not commonly analyzed, such as driving. The occupational therapist can use different evaluation tools and methods not seen in this program. Overall, this program aimed to use evaluation and screening methods found in traditional and emerging areas of practice to provide a comprehensive, high level of care. Implementation The implementation of the preoperative therapy program required a multi-facet approach. The first objective was the data collection and analysis. After the completion of the needs assessment, the OT student concluded the biggest area of concern to be skilled nursing facility utilization. The hospital administrators identified skilled nursing facility placements as a costly component and identified it as a focal point for data collection and analysis. In partnership with two senior analysts at the site, the team collected data pertaining to the current performance of the hospital with individuals undergoing joint replacements. The OT student gathered data to examine the financial benefits, and clinical benefits a preoperative therapy program could have at this site. The team collected complete joint replacement bundle data from the calendar year 2017. Hospital administrators track the bundle data due to the connections with hospital performance and Medicare ratings (Press et al., 2016). This connection allowed the team to gather comprehensive data when justifying the implementation of the program. Four hundred eleven patients belonged to the complete joint replacement bundle in 2017. Fifty-three patients DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 14 discharged to a skilled nursing facility. The team determined the average cost associated with a patient discharged to a skilled nursing facility from the bundle to be 11,000 dollars. In 2017, the 53 patients that discharged to a skilled nursing facility cost the hospital 568,478 dollars. To gain an understanding of the possible cost reduction a preoperative therapy program could have, the OT student and therapy staff conducted a chart review of the 53 patients. Each chart was examined to determine the therapy recommendation and if it was congruent with the eventual discharge location. Upon completion, the team identified 25 patients who should have discharged to their homes instead of a skilled nursing facility. The further evaluation determined that the bulk of these patients lacked education and services before their surgeries, which resulted in discharge to a skilled nursing facility. Following the completion of the chart review, the OT student created an Excel table that illustrated the financial benefits a preoperative therapy program would have (See Appendix). The Excel table presented the cost savings associated with a 4% decrease in skilled nursing facility discharges (16 patients a year). The team concluded that if 16 patients a year discharged home with home care instead of a skilled nursing facility, the hospital would save 118,784 dollars annually. The table also includes the financial expense associated with hiring a part-time occupational therapist to manage the program. After hiring the part-time occupational therapist, the hospital would save 69,997 dollars annually. Administration and therapy staff believe additional savings are achievable through a decrease in skilled nursing facility placements, a decrease in the LOS, decrease in readmissions, and improvement in surgeon compliance. Through the data, the team provided a means to justify the implementation of the preoperative therapy program to administrative staff at this site. The second objective was to create the framework for the day-to-day operations of the therapist managing the program. To start this process, the OT student organized a meeting with DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 15 the nursing staff, pre-surgical testing staff, and the therapy team. The team identified pre-surgical testing as the gateway for therapy evaluation and treatment. The team determined that nurses in the pre-surgical testing department would call patients scheduled for their upcoming surgical procedure. These calls would utilize the BRASS. The team determined if an individual scored fewer than a ten (low risk) the occupational therapist would call the patient to provide education and exercises required for his or her surgery. If an individual scored greater than a ten (moderate to high risk), the occupational therapist would call the patient to schedule an OT evaluation in the hospital therapy gym. In addition to the calls, the nursing staff implemented a new hospital education class that informs future patients of hospital expectations when admitted for surgical procedures. To achieve surgeon participation, the OT student met with the surgeons to ensure the educational handouts were accurate and tailored to their expectations. Upon approval, the OT student began creating the official educational handouts and exercises for the patients. The framework created an improved understanding of the preoperative therapy program. Effectiveness of Leadership An important skill that leaders exhibit is effective communication. The OT student utilized this skill throughout the doctoral capstone experience to implement a preoperative therapy program effectively. For a team to be successful, communication must be effective to ensure each member of the team is valued and given a chance to be productive. The OT student used his strength in communication to establish an interdisciplinary approach for the implementation of the program. The interdisciplinary team included nursing staff, physicians, therapy staff, administrators, and off-site vendors. The OT student effectively differentiated communication with each to achieve successful outcomes. For example, when communicating with nursing, physicians, and therapy staff, the conversations were centered around clinical care. DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 16 However, when communicating with administrators and off-site vendors, the conversations were centered around the financial impact of the program. By modifying communications with different individuals, the OT student was able to connect with each member, increasing project efficiency and productivity. Another skill that a leader demonstrates is flexibility. The OT student demonstrated flexibility to staff members when scheduling meetings, scheduling evaluations, and when completing tasks. The flexibility shown allowed the team to feel comfortable and complete the tasks at their own pace. The flexible attitude created a culture of support and positivity, which allowed the team to implement the program effectively. Staff Development. As the program entered the implementation phase, it was important to include staff development and ensure the continuation of the program. When completing tasks and objectives, meetings were held with the therapy staff to ensure carryover of skills. Additionally, the OT student presented evidence-based research to therapy staff during lunch and meetings. When developing the framework for the day-to-day operations of the therapist, the OT student consulted with the therapy staff to gather input for improved effectiveness of the program. The OT student utilized the therapy team feedback to ensure individual efficiency in managing the program. In addition, the OT student created an evaluation tool for use in the preoperative therapy program. In terms of data collection and analysis, the OT student requested therapy staff members to assist with portions of the data collection to ensure carryover of skills. The staff involvement ensured that if staff members had to continue the program they would be effective in collecting outcome data. The OT student approached the development and implementation with an interdisciplinary approach ensuring staff members understood the importance of the program and felt they were impactful towards the implementation of the preoperative therapy program. DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 17 Discontinuation For the preoperative therapy program to reach its full potential, it was necessary to implement continuous quality improvement and outcome measurement. Following the data collection phase, the team identified an area for continued quality improvement. Currently, Saint Joseph Regional Medical Hospital performs in the top ten percent of hospitals in the region for skilled nursing facility placement with joint replacement patients. The preoperative therapy program intends to improve this performance with a four percent decrease in skilled nursing facility placements. With continued quality improvements and outcome measurements, the team strives to make Saint Joseph Regional Medical Hospital the number one hospital in the region in terms of skilled nursing facility placement rates and postoperative outcomes. The team established a plan for continued improvement to reach goals. The first step in this plan was to continue data collection. The team created an Excel document to track the programs volume. This document tracks the appointment date, the patient's preoperative BRASS score, the education and interventions provided, the patient's discharge location, and postoperative Short Musculoskeletal Function Assessment Score (SMFA). The team will utilize the form to examine trends within the data. For instance, if a trend forms between a specific intervention and a decrease in skilled nursing facility placement, the team will educate the occupational therapist to make improvements. Conversely, if the team finds a negative trend, the team will work with the occupational therapist to address the issue and provide a solution. The Excel document provides the data necessary to implement continued improvements throughout the program's lifecycle. In addition to data collection, the team created checkpoints throughout the program for continuous quality improvement. Some of these checkpoints will be meetings that include members of the preoperative therapy team. During these meetings, the preoperative therapy team will discuss the DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 18 current state of the program. If a member of the team feels an area could be improved, the team will work together to provide alternative methods and strategies to address the problem. Another set of checkpoints will be patient feedback discussions at one month, three months, and six months postoperatively. During this time, the team will incorporate patient feedback into the continued improvement of the program. The team will utilize the SMFA as the primary outcome measurement following the patient's operative procedure. The major outcomes are to decrease financial spending, to improve postoperative outcomes, to decrease the LOS, and to decrease readmissions. The utilization of this tool creates an avenue for continued quality improvement, as well as a measure of program outcomes. An occupational therapist utilizes the SMFA to examine a patient's functional status and his or her attitudes (Williams, 2016). The team will administer the SMFA to patients at one month and six months postoperatively. If a patient indicates improvements in functional status compared to his or her BRASS scores, the team will examine what parts of the program led to the improvements. Additionally, improvements in functional status should correlate to decreased financial spending, decreased LOS, and decreased readmissions. Ultimately, the occupational therapist will utilize the SMFA to assist with meeting program goals and provide support for the continuation of a preoperative therapy program at this site. Addressing the Societal Need Two societal needs helped to drive the program and its contents. The first societal need is the individuals suffering from a diagnosis of arthritis at an increasing rate. The significant percentage of individuals who have arthritis has created a societal need for improved treatment methods to combat the negative effects of arthritis. A treatment method that has emerged to help individuals with end-stage arthritis is a total joint replacement. As more individuals undergo total DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 19 joint replacement surgeries, the need for improved resources and treatments surrounding these procedures increases. The preoperative therapy program addressed this need by expanding the pre-existing services available at this site. Implementation of new educational materials, exercises, adaptive devices, and home modifications improve the experience of undergoing total joint surgery. The preoperative program at this site adds to the ongoing efforts for improved care around the nation for individuals who have arthritis. The second societal need addressed by the OT student while developing and implementing this program was the need for improved outcomes and expectation fulfillment following a surgical procedure. The team understood the importance of expectation fulfillment within postoperative outcomes. The team developed the educational materials and interventions for the program to address expectation fulfillment. A patients expectations would be clear, and the occupational therapist would educate the patient to achieve the fulfillment of those expectations. The OT student created educational materials centered around surgical procedures, typical responses to the surgery, and individualized information about the patient's functional needs. The OT student utilized interventions to examine the expectations of the patient. Additionally, the team included questions regarding the patients expectation fulfillment within the postoperative questionnaires. The OT student addressed the societal needs throughout the program. The preoperative therapy team created an environment that strived to make a difference. It was important for the team to address the needs of the patients at the site, as well as all possible patients in society. Overall Learning DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 20 Throughout the experience, the OT student strived to effectively interact with all individuals through written, oral, and non-verbal communication. The experience provided opportunities for communication in a variety of settings and with a variety of individuals. The OT student effectively communicated with multiple individuals within the hospital setting. These individuals included nursing staff, therapy staff, administrators, off-site vendors, patients, and fellow students. Much of the communication among staff members happened via email. Within these emails, the OT student had to communicate professionally and promptly. This form of communication was key in reaching weekly objectives and goals. In addition to written email communication, the OT student provided written documents to hospital administrators. These documents highlighted the programs progress while being specific and concise. The team shared these documents with the chief executive officer, president, chief financial officer, chief medical officer, and other high-ranking administration officials. Therefore, it was imperative that all writing was professional and efficient. Oral communication happened throughout the experience. Daily meetings with the site mentor provided an opportunity for the OT student to express his thoughts and opinions about the progress of the program. During these meetings, the OT student effectively communicated while remaining professional and concise. In addition to meetings with the site mentor, the OT student facilitated several meetings with a variety of hospital staff members. During these meetings, the OT student maintained a professional and organized appearance. The wide variety of disciplines that were part of the program development process enforced the need for individualized oral communication. The student adapted communication to each effectively. For instance, when discussing financial data with hospital administrators, the student was confident and assertive when discussing findings and conclusions. When discussing clinical care and the DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 21 importance of the program, the student adapted the communication to meet the concerns of other clinical staff members. Similarly, the student utilized effective communication when speaking with patients in the community. There were cases when the OT student vocalized the importance of preoperative therapy to members in society. While discussing this information, the OT student communicated appropriately and used non-medical, simple language when necessary. The OT student incorporated health literacy strategies speaking with the public to ensure a greater understanding of concepts. The OT student utilized non-verbal communication professionally and appropriately. While communicating with individuals, the OT student maintained eye contact and refrained from displaying a posture of disinterest, such as crossing arms. In addition to this, the OT student understood the role of an active listener in conversations. The OT student listened to every individual fully and never interrupted. The act of listening allowed members of the preoperative team to discuss their views and opinions. This act created an environment where each member of the team felt valued. In addition to listening to staff members, the OT student engaged in active listening while discussing the program with patients in the public sphere. These patients provided input into what they would appreciate from a program. The OT student created the most effective program at this setting utilizing this feedback. Leadership and Advocacy The doctoral capstone experience provided many opportunities for the OT student to advocate for the importance of the profession. As the only occupational therapist in the preoperative therapy team, it was important to advocate for the reasons why an occupational therapist was best suited for this position. To do this effectively, the OT student discussed what an occupational therapist does and how the OT scope of practice best fits the responsibilities of DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 22 the position. Additionally, the OT student presented literature demonstrating the impact OT could have with a preoperative program. In addition to advocating for the profession, the OT student advocated for the patients that the program would serve. Although presentations were tailored to the financial benefits, it was important to acknowledge the positive impact the program would have with the satisfaction and outcomes of the patients. During a meeting with the hospital president, the OT student demonstrated advocacy for client-centered care. After the OT student presented the data, the president asked for additional benefits to justify the program. During this time, the OT student presented multiple clinical benefits of the program. These included patient satisfaction, community engagement, and improved care. Through the presentation of these benefits, the OT student advocated for the patients who would benefit from the program. To implement the program successfully, the OT student utilized effective leadership skills. These skills included effective communication, flexibility, delegation, teamwork, and drive. Throughout the development, the OT student maintained open and effective communication with the staff. The OT student utilized all forms of communication to enhance the experience and to accomplish goals. Additionally, the OT student utilized written communication via email to schedule meetings, discuss program progress, and to delegate tasks. Some tasks required assistance from multiple individuals. The OT student successfully delegated these tasks to different individuals. The delegation allowed an individual to utilize his or her strengths to accomplish a specific goal. In addition to the delegation, the OT student utilized the analysts at the site to assist with data collection. As the OT student delegated the tasks, the OT student could complete additional tasks to accomplish goals more effectively. To create a positive environment within the preoperative therapy team, the OT student demonstrated DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 23 flexibility while completing program development. By utilizing these skills as a leader, the team felt comfortable and cohesive when completing tasks. Individuals understood that the OT student would aid throughout and would be flexible with completion dates. The flexibility decreased stress and allowed individuals to perform at a high level. The leadership skill that was most important during the development and implementation of this program was drive. Throughout the development and implementation, there were times for celebration and times for despair. The experience truly tested the drive of the OT student. After an initial meeting with the president of the hospital, the program had hit a low point, and the outlook for implementation was very low. However, after an additional meeting, the president approved the presentation of the project for implementation. Without the continuous drive to accomplish the goals originally set, this program would have never existed or impacted the many individuals at this site. References DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 24 Bonnel, W., & Smith, K. (2018). Proposal Writing for Clinical Nursing and DNP Projects. Springer Publishing Company. Cabilan, C. J., Hines, S., & Munday, J. (2016). The impact of prehabilitation on postoperative functional status, healthcare utilization, pain, and quality of life. Orthopaedic Nursing, 35(4), 224-237. doi: 10.1097/NOR.0000000000000264 Christiansen, C. H., Baum, C. M., & Bass, J. D. (2015). Occupational therapy: Performance, participation, and well-being. Thorofare, NJ: SLACK Incorporated. Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, NJ: SLACK Incorporated. Collins, N. J., Prinsen, C. A. C., Christensen, R., Bartels, E. M., Terwee, C. B., & Roos, E. M. (2016). Knee Injury and Osteoarthritis Outcome Score (KOOS): Systematic review and meta-analysis of measurement properties. Osteoarthritis and Cartilage, 24(8), 13171329. doi: 10.1016/j.joca.2016.03.010 Cunic, D., Lacombe, S., Mohajer, K., Grant, H., & Wood, G. (2014). Can the Blaylock Risk Assessment Screening Score (BRASS) predict length of hospital stay and need for comprehensive discharge planning for patients following hip and knee replacement surgery? Predicting arthroplasty planning and stay using the BRASS. Canadian Journal of Surgery, 57(6), 391. doi: 10.1503/cjs.024113 Drummond-Dye, R., & Smith, H. (2016). Compliance matters: The comprehensive care for joint replacement model. Retrieved February 9, 2019, from http://www.apta.org/PTinMotion/2016/3/ComplianceMatters/ DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 25 Kurtz, S., Ong, K., Lau, E., Mowat, F., & Halpern, M. (2007). Projections of primary and revision hip and knee arthroplasty in the United States from 2005 to 2030. Journal of Bone and Joint Surgery, 89(4), 780-785. doi: 10.2106/JBJS.F.00222 Lyman, S., Lee, Y. Y., Franklin, P. D., Li, W., Mayman, D. J., & Padgett, D. E. (2016). Validation of the HOOS, JR: A short-form hip replacement survey. Clinical Orthopaedics and Related Research, 474(6), 1472-1482. doi: 10.1007/s11999-016-47182 Mednick, R. E., Alvi, H. M., Krishnan, V., Lovecchio, F., & Manning, D. W. (2014). Factors affecting readmission rates following primary total hip arthroplasty. Journal of Bone and Joint Surgery, 96(14), 1201-1209. doi: 10.2106/JBJS.M.00556 National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). (2019). Retrieved from https://www.cdc.gov/chronicdisease/resources/publications/factsheets/arthritis.htm Palazzo, C., Jourdan, C., Descamps, S., Nizard, R., Hamadouche, M., Anract, P., Poiraudeau, S. (2014). Determinants of satisfaction one year after total hip arthroplasty: The role of expectations fulfillment. BMC Musculoskeletal Disorders, 15(1), 53. doi: 10.1186/14712474-15-53 Porter, M. E. (2009). A strategy for health care reformToward a value-based system. New England Journal of Medicine, 361(2), 109-112. doi: 10.1056/NEJMp0904131 Press, M. J., Rajkumar, R., & Conway, P. H. (2016). Medicares new bundled payments: Design, strategy, and evolution. Jama, 315(2), 131-132. doi: 10.1001/jama.2015.18161. Snow, R., Granata, J., Ruhil, A. V., Vogel, K., McShane, M., & Wasielewski, R. (2014). Associations between preoperative physical therapy and post-acute care utilization DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 26 patterns and cost in total joint replacement. Journal of Bone and Joint Surgery, 96(19), e165. doi: 10.2106/JBJS.M.01285 Soares, S. M., Nucci, L. B., da Silva, M. M., & Campacci, T. C. (2013). Pulmonary function and physical performance outcomes with preoperative physical therapy in upper abdominal surgery: A randomized controlled trial. Clinical Rehabilitation, 27(7), 616-627. doi: 10.1177/0269215512471063 Soeters, R., White, P. B., Murray-Weir, M., Koltsov, J. C., Alexiades, M. M., & Ranawat, A. S. (2018). Preoperative physical therapy education reduces time to meet functional milestones after total joint arthroplasty. Clinical Orthopaedics and Related Research, 476(1), 40-48. doi: 10.1007/s11999.0000000000000010 Tilbury, C., Haanstra, T. M., Leichtenberg, C. S., Verdegaal, S. H., Ostelo, R. W., de Vet, H. C., Nelissen, R. G. H. H., & Vlieland, T. P. V. (2016). Unfulfilled expectations after total hip and knee arthroplasty surgery: There is a need for better preoperative patient information and education. The Journal of Arthroplasty, 31(10), 2139-2145. Tilbury, C., Haanstra, T. M., Verdegaal, S. H., Nelissen, R. G., de Vet, H. C., Vlieland, T. P. V., & Ostelo, R. W. (2018). Patients preoperative general and specific outcome expectations predict postoperative pain and function after total knee and total hip arthroplasties. Scandinavian Journal of Pain, 18(3), 457-466. Williams, N. (2016). The short musculoskeletal function assessment (SMFA) questionnaire. Occupational Medicine, 66(9), 757. doi: 10.1093/occmed/kqw140 Yu, S., Garvin, K. L., Healy, W. L., Pellegrini Jr, V. D., & Iorio, R. (2015). Preventing hospital readmissions and limiting the complications associated with total joint arthroplasty. DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY Journal of the American Academy of Orthopaedic Surgeons, 23(11), e60-e71. doi: 10.5435/JAAOS-D-15-00044 27 DEVELOPMENT AND IMPLEMENTATION OF A PREOPERATIVE THERAPY 28 Appendix Financial Benefits of the Preoperative Therapy Program Preoperative Therapy Program Proposal In the calendar year 2017, we sent 53 patients in the bundle to a skilled nursing facility from the hospital. Skilled nursing facility placements resulted in 568,478 dollars spent on skilled nursing facility stays within the post-acute phase. Scenario Hire part-time occupational therapist to manage preoperative therapy program. Percentage of patient episodes sent to a skilled nursing facility in 2017 Skilled nursing facility cost is 10,726 dollars on average per episode 4% Decrease 13% (53/411) The total cost of episodes sent to a skilled nursing facility $568,478 16 patients per year $171,616 16 patients per year -$52,832 Total Savings $118,784 Plan to decrease the number of patients who go skilled nursing facility to 9% (16 Patients fewer) Home health care cost is 3,302 dollars on average per episode Cost savings for 16 patients to go home with home care instead of a skilled nursing facility Expenses 1 Part Time OT Rate Benefits 36.1 10.83 Total 46.93 Hours needed per week 20 Annual Hours 1040 Assuming 16 more patients per year go home instead of a skilled nursing facility, and the occupational therapists salary, the actual benefit will be Assuming we decreased the number of episodes sent to a skilled nursing facility to 8% Assuming we decreased the number of episodes sent to a skilled nursing facility to 7% Total Cost $48,807 $69,977 $99,673 $129,369  ...

... Improving Quality of Life in Individuals Diagnosed with Parkinsons Disease and Their Caregivers Jennifer E. Lynn, 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: Brenda S. Howard, DHSc, OTR Running head: PARKINSONS DISEASE 1 A Capstone Project Entitled Improving Quality of Life in Individuals Diagnosed with Parkinsons Disease and Their Caregivers 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 Jennifer E. Lynn 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 PARKINSONS DISEASE 2 Abstract The purpose of this doctoral capstone project was to provide education and resources regarding the role of occupational therapy (OT) with Parkinsons disease (PD), coping skills, selfmanagement, wellness, and fall prevention in order to improve overall quality of life (QoL) of individuals diagnosed with PD and their caregivers. Many individuals are diagnosed with PD each year and face a multitude of challenges that can affect performance in daily occupations. Individuals diagnosed with PD can experience difficulties with coping with this progressive illness, health and wellness, self-management of symptoms, and falls. This author conducted a needs assessment with staff of the Indiana Parkinson Foundation (IPF) to discover areas of interests and needs of the organization. Intervention consisted of three educational presentations to the participants of The Climb, an exercise program designed for individuals with PD, sponsored by IPF. This author presented material on what was found in needs assessment, such as the role of OT with PD, coping skills, self-management, The Seven Dimensions of Wellness, and fall prevention/Durable Medical Equipment (DME). Results included an increase in scores as measured by post-session surveys across multiple locations where Climb classes are held, as well as excellent feedback from participants with PD and their caregivers. Additionally, this author gained advocacy, leadership, and communication skills as well as advanced knowledge in the area of Parkinsons disease. Overall, this experience provided a great opportunity for an occupational therapy doctoral student to advocate for the role of OT in a community-based setting. PARKINSONS DISEASE 3 Improving Quality of Life in Individuals Diagnosed with Parkinsons Disease and Their Caregivers An estimated 60,000 Americans are diagnosed with PD each year (Parkinsons Foundation, 2018). Parkinsons disease is a chronic, neurological condition with no cure (Parkinsons Foundation, 2018). About 4% of individuals diagnosed with PD receive their diagnosis before the age of 50 (Parkinsons Foundation, 2018). The symptoms of PD consist of motor and non-motor symptoms that are progressive in nature (Parkinsons Foundation, 2018). In a recent study, researchers discovered that persons with PD demonstrated reduced cognitive performance and had increased symptoms of depression, apathy, and anxiety (DIorio et al., 2017). Individuals diagnosed with PD progress through five stages, which can result in decreased independence in occupations, especially activities of daily living (ADLs) (Meek et al., 2010). In addition, caregivers can experience increased stress when assisting their loved one in everyday activities (Navarta-Snchez et al., 2017). Based on this literature, there is a need for education and resources directed at helping individuals with a PD diagnosis and their caregivers. Review of Literature As Parkinsons disease is considered to be a chronic condition, it is important to recognize the role that occupational therapy (OT) can play within this population (American Parkinsons disease Association [APDA], 2019; American Occupational Therapy Association [AOTA], 2015). Occupational therapy practitioners can educate and train individuals diagnosed with Parkinsons disease in the skill of self-management (AOTA, 2015). Self-management is defined as, the decisions and behaviors that patients with chronic illness engage in that affect their health (Improving Chronic Illness Care, 2019, para. 1). PD may be difficult to manage due to the mental, emotional, and physical effects it has on the individual and the caregiver (Waite, PARKINSONS DISEASE 4 2014). Occupational therapists can teach individuals diagnosed with PD and their caregivers strategies related to energy conservation and work simplification, safety within the home environment, as well as ways to cope with the psychosocial challenges, such as anxiety and depression (AOTA, 2015). Occupational Therapy Intervention Multiple researchers have discovered the effectiveness of occupational therapy interventions with individuals diagnosed with PD (Chapman & Nelson, 2014; Meek et al., 2010; Sturkenboom et al., 2014). Sturkenboom et al. (2014) conducted a randomized controlled trial to assess the efficacy of home health occupational therapy with individuals diagnosed with PD. Participants were assigned to an OT intervention group that consisted of ten weeks of home health OT or to a control group (Sturkenboom et al., 2014). Researchers concluded that home health OT resulted in increased self-perceptions of occupational performance in daily activities, as measured by improvements on the Canadian Occupational Performance Measure (Sturkenboom et al., 2014). In a similar study, researchers completed a case study on a 78-yearold man diagnosed with PD in order to investigate the effects of home health occupational therapy (Chapman & Nelson, 2014). The OT intervention consisted of self-care training, fall prevention, yardwork, leisure pursuits, and religious participation over a six-week period (Chapman & Nelson, 2014). The researchers found improvements in mobility and functional transfers, increased independence with ADLs, an increase in quality of life, decreased fear of falling, and increased interest and participation in leisure activities (Chapman & Nelson, 2014). Educational Interventions Numerous researchers have examined the efficacy of educational interventions for PD (Cohen et al., 2016; Guo, Jiang, Yatsuya, Yoshida, & Sakamoto, 2009; Poyner-Del Vento, Goy, PARKINSONS DISEASE 5 Baddeley, & Libet, 2018). Educational interventions with caregivers have resulted in decreased psychological distress (Poyner-Del Vento et al., 2018). Similarly, educating health professionals in PD and team roles improved clinicians' knowledge and attitudes regarding working with the health care team in the care of PD patients (Cohen et al., 2016). Finally, educational interventions with PD patients have resulted in improvements in health-related quality of life (HRQoL), increased performance with ADLs and movement, and improved mood (Guo et al., 2009). Self-Management Interventions Multiple researchers have studied the effects of self-management interventions for PD (Advocat et al., 2016; Hellqvist, Dizdar, Hagell, Bertero, & Sund-Levander 2018; NavartaSnchez et al., 2017; Pickut et al., 2015). Self-management techniques that have demonstrated efficacy in the literature have included cognitive-behavioral therapy (Hellqvist et al., 2018), mindfulness training (Advocat et al, 2016; Pickut et al., 2015), and coping skills (NavartaSnchez et al., 2017). These interventions have resulted in significant improvements when conducted in group settings (Advocat et al., 2016; Hellqvist et al., 2018; Navarta-Snchez et al., 2017; Pickut et al., 2015). Based on the results of literature, it is evident how education and self-management interventions, such as mindfulness and the development of coping skills, can help individuals with PD self-manage their symptoms (Advocat et al., 2016; Cohen et al., 2016; Guo et al., 2009; Hellqvist et al., 2018; Navarta-Snchez et al., 2017; Pickut et al., 2015; Poyner-Del Vento et al., 2018). PARKINSONS DISEASE 6 Theoretical Framework The frameworks for this project were the social cognitive theory of self-regulation and the Health Belief Model (HBM). Based on the literature regarding PD, this author deemed education as the primary focus for this project. Bonnel & Smith (2018) recommend cognitive and behavioral theories for education, and the HBM for new programs. For this project, education regarding self-management of PD, the role of occupational therapy with PD, coping skills, health and wellness, and fall prevention and home safety were provided to clients, in order to help individuals and caregivers of PD manage their chronic condition and improve their overall quality of life. The social cognitive theory has a large focus on interpersonal factors, behavior, and the environment (Lyons, 2003). Lyons (2003) discussed how this theory can be a beneficial framework for the development of self-management programs, especially within this population. The social cognitive theory suggests that individuals can develop skills to overcome obstacles by practicing self-examination, assess what is happening, and respond with problem-solving behaviors, otherwise known as self-regulation (Lyons, 2003). This theory provides beneficial guidelines for this author, as the goal was to educate the clients on looking internally and externally at themselves, observe their symptoms and feelings towards PD, and change or modify their behavior in a positive way that will help them self-manage their condition, and in turn, improve their quality of life. The HBM has a large focus on personal health beliefs and health behaviors (Scaffa, Reitz, & Pizzi, 2010). According to the model, perceived susceptibility, perceived severity, perceived benefits, and perceived barriers are the beliefs that influence health behavior (Rosenstock, 1966, 1974; Scaffa, Reitz, & Pizzi, 2010). For this project, all of the clients had PARKINSONS DISEASE 7 already been diagnosed with PD or were a caregiver for a loved one with PD, the component of perceived resusceptibility, which includes the belief in the certainty and acknowledgement of the diagnosis, was also used as a guideline (Becker, 1974; Rosenstock, Strecher, & Becker, 1994; Scaffa, Reitz, & Pizzi, 2010). By using the social cognitive theory and HBM, the author aimed to educate consumers and staff associated with Indiana Parkinson Foundation (IPF) on the role of OT with PD, coping skills, self-management, wellness, and fall prevention in order to inform the consumers on the importance of examining their personal health beliefs and behaviors and to promote positive behavior change. As a secondary focus, this author provided resources to the site regarding the above topics that can be administered to future consumers of the organization. Screening & Evaluation The Indiana Parkinson Foundation is a non-profit, community-based organization that aims to improve the daily lives of people with Parkinsons disease, by providing research-based exercise programs and support systems (Indiana Parkinson Foundation, 2019). In order to thoroughly assess the needs of IPF, this author developed and conducted a needs assessment and a Strengths, Weaknesses, Opportunities, and Threats (SWOT) analysis (Bonnel & Smith, 2018; Scaffa, Reitz, & Pizzi, 2010). This author conducted informal interviews with the program director, leaders of the support groups, and the volunteer coordinator in order to gain insight into the needs of the organization. Several themes developed from the needs assessment. The consumers of the IPF were lacking knowledge on a variety of topics, such as the role of occupational therapy, and medication and sleep. The site mentor reported that there was difficulty in obtaining feedback from the support groups as well as decreased attendance at the support groups. The staff of IPF expressed a desire for more education and resources regarding PARKINSONS DISEASE 8 the role of OT with PD, coping skills, wellness, self-management of PD, fall prevention and durable medical equipment (DME) resources. Please see Appendix A for the needs assessment questionnaire. This author and the program director at the site collaboratively decided to hold educational sessions regarding the above topics, in order to increase knowledge of the consumers. This author and the program director of IPF decided to plan the educational sessions after The Climb classes, which offer research-based exercises in a group format, targeted towards slowing the progression of PD symptoms. The findings from the needs assessment correlated to what was discovered in the literature. According to the literature, persons with PD are more likely to have difficulty coping with their chronic illness, have decreased HR-QoL, are at an increased risk for falls, and have a need for self-managing their symptoms (Advocat et al., 2016; Chapman & Nelson, 2014; DIorio et al., 2017; Hellqvist et al., 2018; NavartaSnchez et al., 2017). Therefore, the author deemed these topics to be important to address with the consumers of the organization. The service delivery model of this project differs in comparison to other practice areas. The screening and evaluation for this project took place in a community-based setting that is focused on health and wellness of individuals with PD. These types of settings are considered to be emerging practice areas (OBrien & Hussey, 2012). This author used a consultative model of service but was not able to bill for services due to a licensed occupational therapist not being on site. This differs in comparison to more traditional settings, such as acute care or subacute care, which would typically bill for services directly, rather than using a consultative model (OBrien & Hussey, 2012). The main difference between this emerging practice area and an existing practice area is the method of service delivery and ability to bill for services. PARKINSONS DISEASE 9 Despite the differences across practice settings, the subject matter of the planned interventions would likely be similar to that in a traditional setting. Occupational therapists working with individuals with PD in the medical model of practice, would likely address similar topics, such as fall prevention and education on self-management, due to the evidence in OT literature (Chapman & Nelson, 2014; Sturkenboom et al., 2014). Further research should be completed in order to examine the precise similarities and differences across practice areas for efficacious interventions for treating individuals with PD. Implementation Phase For the implementation phase of this project, this author examined the results of the needs assessment and SWOT analysis in order to develop goals for reaching the needs of IPF. The needs and expressed desires of IPF consisted of more education regarding the role of occupational therapy with PD, coping skills, wellness, self-management of PD, fall prevention and DME resources. Other expressed needs from IPF consisted of wanting more education and resources regarding medication and sleep, as well a way to obtain feedback from caregiver support groups and a way to address decreased attendance at caregiver support groups. This author then developed educational sessions that consisted of a presentation and handouts based on current, evidence-based practice. Please see Table 1 for the expressed needs and DCE student goals. Three educational presentations were prepared and presented at two of the locations where The Climb classes are held, Greenwood and Noblesville, Indiana. Two topics were discussed within each presentation. The material in session 1 consisted of education and advocacy for the role of occupational therapy with Parkinsons disease, as well as coping skills. The material in session 2 consisted of education on The 7 Dimensions of Wellness and the skill PARKINSONS DISEASE 10 of self-management. The material in session 3 consisted of education and resources on fall prevention, home safety, and DME. Objectives for each presentation were developed based on the content of each presentation. Please see Table 2 for the specific objectives for each educational session. The sessions took place once a month at each location, from January to April 2019. In order to promote effective implementation of the education and resources, this author consulted occupational therapy textbooks and current research articles to develop each of the educational sessions. Additionally, this author included pre and post surveys which allowed for attendees to give feedback, as well as the ability for this author to measure the effectiveness of the educational sessions. Likert rating scales were used for the pre and post surveys for the consumers to rate the effectiveness of each presentation. The pre and post surveys each contained 5 questions in which participants could rate their knowledge on a scale of 1 to 5 on the given topics before and after each presentation. Furthermore, the surveys had a designated space for consumers to write comments or suggestions regarding the presentation. Throughout the implementation phase of this project, this author incorporated various leadership skills within each presentation. This author used effective communication in order to deliver the educational pieces through a presentation format, followed by an opportunity for attendees to ask questions. This author also rehearsed each of the presentations several times to ensure effective delivery. In addition, this author had the opportunity to present the materials and lead discussions at the caregiver support groups, which required effective communication, time-management, and organization skills. These skills also aided in the development of the staff. Some staff members were unfamiliar with a few pieces of the educational material and resources that this author provided, which further increased their knowledge and ability to coach PARKINSONS DISEASE 11 and support their clients, specifically resources regarding wellness and fall prevention. Additionally, this author had the opportunity to develop a fall prevention handout that will be added to training manuals of IPF for future trainers, in order to promote further staff development. Toward the end of the DCE rotation, this author was given the opportunity to travel with the site mentor to educate Climb trainers at different locations across Indianapolis on the educational pieces that the DCE student developed. This was another example of how leadership, communication, and planning promoted staff development across multiple Climb locations. Discontinuation and Outcome Phase The first educational sessions took place in Noblesville and Greenwood, IN. The role of occupational therapy with PD and coping skills were presented to the consumers. Thirteen consumers were present at Noblesville and 14 consumers were present at Greenwood. Consumers consisted of individuals diagnosed with PD, their caregivers, Climb trainers, and Climb volunteers. This author discovered a 1.5 increase in scores from the pre and post, 5-item Likert scale, survey in Noblesville and a 1.2 increase in scores in Greenwood. Many consumers wrote positive comments and feedback on the surveys. Some comments ranged from interesting, the positive coping skills were especially helpful, to describing this author as perceptive, interesting, caring, and knowledgeable. The second educational sessions also took place in Noblesville and Greenwood, IN. The Seven Dimensions of Wellness and the skill of self-management were presented to the consumers. Fifteen consumers were present at Noblesville and 11 consumers were present at Greenwood. This author discovered a 1.7 increase in scores from the pre and post, 5-item Likert scale, survey in Noblesville and a 1.3 increase in scores in Greenwood. Feedback for this author PARKINSONS DISEASE 12 consisted of many positive comments. One individual wrote This was very informative and beneficial. I feel as though I can provide better care to my wife. Thanks. This author presented the third educational sessions at Noblesville and Greenwood and educated the consumers about fall prevention, home safety, and DME. Eleven consumers were present at Noblesville and 15 were present at Greenwood. This author discovered a 1.7 increase in scores from the pre and post, 5-item Likert scale, survey in Noblesville and a 1.5 increase in scores in Greenwood. Various of the attendees wrote in feedback for this author, such as Presentation was well done, I am now much better informed to be a good caregiver, and Covered material in a timely manner. In order to ensure quality improvement and ongoing education for The Climb trainers, this author provided electronic and paper copies of all handouts, resources, and materials for IPF to pass along to staff members and trainers, so the consumers of The Climb at all locations can continue to be served and educated in an effective manner. Additionally, this author provided the program director with a list of possible projects or programs that future DCE students could complete in order to serve IPF and ensure further quality improvement. Due to the large number of individuals diagnosed with PD in todays society, and the number of deficits that can be associated with PD, such as difficulty coping with and self-managing the illness, an increased fall risk, and decreased health-related quality of life, this author was able to effectively meet the needs of this Indiana organization by providing quality, evidence-based materials. The materials presented effectively met the needs of IPF, based on what this author discovered in the needs assessment, and how the consumers knowledge increased after observing each presentation. PARKINSONS DISEASE 13 Overall Learning Through the doctoral capstone experience, this student demonstrated excellent leadership and advocacy skills. The first educational session advocated for the role of occupational therapy when working with individuals with PD and their caregivers. In addition, when attending meetings and networking events, this author educated others on the purpose of the DCE project, as well as advocated for the occupational therapy profession as a whole. This author demonstrated effective leadership skills by constructing a needs assessment and developing educational materials that were pertinent for IPF. Through the DCE experience, this author was able to gain in-depth knowledge about Parkinsons disease, through the participation and observation of The Climb exercise classes, conference calls with larger organizations, support groups, assessments, and guest speakers presentations. Additionally, this author demonstrated effective communication and exceptional time-management skills by completing projects in a timely manner and taking the time to get to know the consumers of IPF. This author had the opportunity to meet many individuals, caregivers, healthcare professionals and non-healthcare professionals, and learn from them while also educating about various topics in the OT profession. Overall, this experience was a great way for this author to gain advanced knowledge in the area of Parkinsons disease as well as improve the knowledge of others through education and advocacy. PARKINSONS DISEASE 14 References Advocat, J., Enticott, J., Vandenberg, B., Hassed, C., Hester, J., & Russell, G. (2016). The effects of a mindfulness-based lifestyle program for adults with Parkinsons disease: A mixed methods, wait list controlled randomised control study. BMC Neurology, 16(1), 166. American Occupational Therapy Association (AOTA). (2015). The role of occupational therapy in chronic disease management [Fact sheet]. Retrieved from https://www.aota.org/~/media/Corporate/Files/AboutOT/Professionals/WhatIsOT/HW/Fa cts/FactSheet_ChronicDiseaseManagement.pdf. American Parkinsons Disease Association. (2019). What is Parkinsons disease? Retrieved from https://www.apdaparkinson.org/what-is-parkinsons/. Becker, M.H. (1974). The Health Belief Model and sick role behavior. In M.H. Becker (Ed.), The health belief model and personal behavior (pp. 82-92). Thorofare, NJ: SLACK. Bonnel, W. & Smith, K.V. (2018). Proposal writing for clinical nursing and DNP projects (2nd Ed.). New York: Springer Publishing Company. Chapman, L., & Nelson, D. (2014). Person-centered, community-based occupational therapy for a man with Parkinsons disease: A case study. Activities, Adaptation & Aging, 38(2), 94112. Cohen, E. V., Hagestuen, R., Gonzlez-Ramos, G., Cohen, H. W., Bassich, C., Book, E., Wichmann, R. (2016). Interprofessional education increases knowledge, promotes team building, and changes practice in the care of Parkinsons disease. Parkinsonism & Related Disorders, 22, 2127. https://doi.org/10.1016/j.parkreldis.2015.11.001. PARKINSONS DISEASE 15 DIorio, A., Vitale, C., Piscopo, F., Baiano, C., Falanga, A. P., Longo, K., DIorio, A. (2017). Impact of anxiety, apathy and reduced functional autonomy on perceived quality of life in Parkinsons disease. Parkinsonism & Related Disorders, 43, 114117. https://doi.org/10.1016/j.parkreldis.2017.08.003. Guo, L., Jiang, Y., Yatsuya, H., Yoshida, Y., & Sakamoto, J. (2009). Group education with personal rehabilitation for idiopathic Parkinson's disease. Canadian Journal of Neurological Sciences, 36(1), 51-59. Hellqvist, C., Berter, C., Sund, L. M., Dizdar, N., & Hagell, P. (2018). Improving self management for persons with Parkinsons disease through education focusing on management of daily life: Patients and relatives experience of the Swedish National Parkinson School. Journal of Clinical Nursing, 27(1920), 37193728. https://doi.org/10.1111/jocn.14522. Improving Chronic Illness Care. (2019). Self-management support. Retrieved from http://www.improvingchroniccare.org/index.php?p=SelfManagement_Support&s=39. Indiana Parkinson Foundation. (2019). Our mission. Retrieved from: https://www.indianaparkinson.org/indiana-parkinsons-foundation-mission/. Lyons, K. D. (2003). Self-management of Parkinson's disease: Guidelines for program development and evaluation. Physical & Occupational Therapy in Geriatrics, 21(3), 1731. Meek, C., Morgan, E., Walker, M. F., Furmston, A., Aragon, A., Birleson, A., ... & Sackley, C. M. (2010). Occupational therapy to optimise independence in Parkinson's disease: the designing and recording of a randomised controlled trial intervention. British Journal of Occupational Therapy, 73(4), 178-185. PARKINSONS DISEASE 16 NavartaSnchez, M., Caparrs, N., Riverol Fernndez, M., Daz De Cerio Ayesa, S., Ursa Sesma, M. E., & Portillo, M. C. (2017). Core elements to understand and improve coping with Parkinson's disease in patients and family carers: A focus group study. Journal of Advanced Nursing. DOI: 10.1111/jan.13335. O'Brien, J. C., Hussey, S. M., Sabonis-Chafee, B., & Sabonis-Chafee, B. (2012). Introduction to occupational therapy. St. Louis, Mo: Elsevier/Mosby. Parkinsons Foundation. (2018). Statistics. Retrieved from: http://parkinson.org/UnderstandingParkinsons/Causes-and-Statistics/Statistics. Parkinsons Foundation. (2018). Symptoms. Retrieved from: http://parkinson.org/understandingparkinsons/symptoms. Pickut, B., Vanneste, S., Hirsch, M. A., Van Hecke, W., Kerckhofs, E., Marin, P., Cras, P. (2015). Mindfulness training among individuals with Parkinsons disease: Neurobehavioral effects. Parkinsons Disease (20420080), 2015, 16. https://doi.org/10.1155/2015/816404. Poyner-Del Vento, P., Goy, E., Baddeley, J., & Libet, J. (2018). The Caregivers' Attachment and Relationship Education Class: A new and promising group therapy for caregivers of individuals with Parkinson's disease. Journal of Couple & Relationship Therapy, 17(2), 97-113. Rosenstock, I. (1966). Why people use health services. Milbank Quarterly, 44(3), 94-124. Rosenstock, I. (1974). Historical origins of the Health Belief Model. In M. Becker (Ed.), The Health Belief Model and personal behavior. Thorofare, NJ: SLACK. PARKINSONS DISEASE 17 Rosenstock, I.M., Strecher, V.J., & Becker, M.H. (1994). The Health Belief Model and HIV risk behavior change In R.J. DiClemente & J.L. Peterson (Eds.), Preventing AIDS: Theories and methods for behavioral interventions (pp. 5-24). New York: Plenum Press. Scaffa, M., Reitz, S.M., & Pizzi, M.A. (2010). Occupational therapy in the promotion of health and wellness. Philadelphia: F.A.Davis Company. Sturkenboom, I. H., Graff, M. J., Hendriks, J. C., Veenhuizen, Y., Munneke, M., Bloem, B. R., ... & OTiP Study Group. (2014). Efficacy of occupational therapy for patients with Parkinson's disease: a randomised controlled trial. The Lancet Neurology, 13(6), 557-566. Waite, A. (2014). Steady progression: Occupational therapys evolving role in helping people with Parkinsons disease. OT Practice, 19(9), 1315. PARKINSONS DISEASE 18 Table 1 Expressed need from organization and correlating DCE Student Goals Expressed Need DCE Student Goal Knowledge on role of occupational therapy Provide education and handouts on role of occupational therapy to participants, caregivers, and trainers through a presentation format. Resources and information on medication Out of DCE students scope. Information on healthy sleep habits Provide a handout of tips to improve sleep hygiene. Lacking feedback from support groups Provide an attendance sheet after each meeting to site mentor who can use it to send satisfaction surveys to participants that attended Decreased attendance at support groups Out of DCE students scope. Coping Skills Provide education and handouts on coping skills for participants, caregivers, and trainers through a presentation format. Wellness Provide education and handouts on The 7 Dimensions of Wellness for participants, caregivers, and trainers through a presentation format. Self-Management Provide education and handouts on selfmanagement strategies for participants, caregivers, and trainers through a presentation format. Fall Prevention/DME Provide education and handouts on practical steps to help prevent falls and DME that can be used to help prevent falls to participants, caregivers, and trainers through a presentation format. PARKINSONS DISEASE 19 Table 2 Educational Session Objectives Education Session Objectives Session 1: Role of Occupational Therapy with PD; Coping Skills The purpose of this session is to better understand the role of occupational therapy (OT) and how it can help you or your loved one with PD. By the end of this session, you will be able to recognize how OT can be beneficial before something happens, such as a fall or a complication of Parkinsons Disease. By the end of the session, you will be able to understand how positive coping skills can help you or your loved one manage symptoms of Parkinsons disease. Session 2: The Seven Dimensions of Wellness; Self-Management By the end of this session, you will have a better understanding of each of the seven dimensions of wellness. By the end of the session, you will have a list of practical steps that you can use to enhance each of the areas of wellness in your life. By the end of the session, you will have a better understanding of how to self-manage your symptoms of PD and your overall health. By the end of the session, you will be educated on free resources available from the national Parkinsons Foundation that you can use in your daily life. Session 3: Fall Prevention; Durable Medical Equipment By the end of this session, you will have a better understanding of some of the causes of falls. By the end of the session, you will have some general advice on how to prevent falls. PARKINSONS DISEASE 20 By the end of the session, you will be educated on proper durable medical equipment that can help prevent falls while completing activities of daily living. PARKINSONS DISEASE 21 Appendix A Needs Assessment What are the biggest strengths of your programs? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ What are the biggest areas for improvement? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ What are some of IPFs short and long-term goals? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ How do you incorporate mental health/wellbeing into your programs? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ Are there any topics/areas that the participants of your programs have asked to be addressed more often? If so, what are they? ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ PARKINSONS DISEASE 22 Which topics are you most interested in? Check all that apply. _____ The role of occupational therapy with Parkinsons Disease _____ Preventing falls within the home environment _____ Durable medical equipment (grab bars, bathroom equipment, etc.) _____ Coping Skills _____ Tips on self-managing Parkinsons Disease _____ Resources on wellness _____ Other (Please specify): ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________  ...