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- ... 1 Evaluating Perceived Competence After Taking a Cancer Survivorship Elective with an Embedded Service Learning Component Taryn Springgate, Megan Yingling, Sierra Kern, Ashton Williams, Shelby Cash, & Kate Kelley 12/16/2022 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: Katie M. Polo DHS, OTR, CLT-LANA 2 A Research Project Entitled Evaluating Perceived Competence After Taking a Cancer Survivorship Elective with an Embedded Service Learning Component 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: Taryn Springgate, Megan Yingling, Sierra Kern, Ashton Williams, Shelby Cash, & Kate Kelley Doctor of Occupational Therapy Students Approved by: Katie M. Polo, DHS, OTR, CLT-LANA Research Advisor 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 3 Abstract Community engagement models (CEMs) encompass teaching pedagogies used to provide students an opportunity for hands-on application of classroom learning while servicing local populations (Bandy, 2019). Incorporating service learning into a curriculum aligns with the Experiential Learning Theory, which is a dynamic, holistic process of learning from experience (Kolb & Kolb, 2017). The purpose of this study was to examine if students CEM experience shaped their perceived competence. Researchers used a sequential explanatory mixed methods design consisting of an online survey, several virtual focus groups, and interviews to assess perceived competence and impressions of the CEMs effects. Participants were alumni of an entry-level doctorate of occupational therapy (OTD) programs cancer survivorship elective. In total, ten alumni completed the survey and eight of those alumni participated in virtual focus groups and interviews. Results from qualitative data suggest that after participating in cancer survivorship education and taking part in a service-learning component, entry-level OT alumni felt competent and confident in their ability to treat cancer survivors. Alumni reported increased interest in treating cancer survivors and a better understanding of the role of OT in the community. No significant correlations between quantitative and qualitative research in terms of perceived competence were found. Given the literature and call for further curricular development in cancer survivorship content, programs should consider developing course content that includes a service learning component to support their graduates competence and confidence in working with cancer survivors. Keywords: cancer survivorship, curriculum design, service learning, education 4 Introduction Community engagement models (CEMs) encompass teaching pedagogies that provide students an opportunity for hands-on application of classroom learning and foster student skill development while simultaneously addressing community needs (Bandy, 2019). CEMs are a crucial part of an occupational therapy (OT) curriculum because they provide practitioners with hands-on experience, which can improve self-confidence, increase cultural awareness, and improve professional development (Jacobs, 2020; Keane & Provident, 2017; Mu et al., 2016; Peterson et al., 2014). Service learning can increase students' knowledge of their field, enhance clinical skills, and improve overall competency (Alt et al., 2011; Kaf & Strong, 2011; Peterson et al., 2014; Ten Tusscher et al., 2020). Service learning pedagogies are categorized as CEMs and incorporate learning goals and meaningful community involvement to encourage student and community growth (Bandy, 2019). Competence encompasses performance, application, and integration of knowledge and skills, including applying standards of care and appropriate policies and procedures in an educational or clinical setting (Moyers, 2002). Competence also includes the ability to use knowledge, skills, attitudes, and values that allow an individual to perform successfully in a profession or occupation (Moyers, 2002). The ideology of incorporating service learning into a curriculum aligns with the Experiential Learning Theory (ELT) (Healey & Jenkins, 2000; Kolb & Kolb, 2017). Kolb & Kolb (2017) defined the ELT as a dynamic, holistic theory of learning from experience that contains four cyclical components: a concrete experience, reflective observation, abstract conceptualization, and active experimentation (see Figure 1). In ELT, two 5 elements encompass the student experience, including learning the basic concepts and reflecting on what students learned. Additionally, two components transform the students' experience, including conceptualizing and actively carrying out what was learned (Kolb & Kolb, 2017). Service learning pedagogies implement these principles by having students learn knowledge from classroom instruction and then apply skills in a hands-on, community experience. Figure 1 Kolbs Experiential Learning Theory (2017) Kaf and Strong (2011) discussed that only some students have the opportunity to be involved in CEMs, which could influence the students outcomes, establishing a need for a CEM provided to all students. Within Kaf and Strong's (2011) study, 48 students participated in a service learning pediatric audiology course, while a control group of ten other students did not participate in the course. The researchers found that 87% of the students that engaged with service learning reported an increase in their overall knowledge and clinical skill development, and 42% reported an increased interest in working with pediatric audiology as a career (Kaf & Strong, 2011). Overall, the students 6 who participated in a service learning component had better outcomes than those who did not (Kaf & Strong, 2011). Mu et al. (2016), Kohlbry (2016), and Keane & Provident (2017) also established a need for integration of CEMs to within classes rather than taking place following the completion of the course, a concept supported by ELT (Kolb & Kolb, 2017). CEMs with service learning pedagogies are utilized across disciplines within academia, especially within healthcare fields. For example, students in baccalaureate and post-baccalaureate healthcare programs engage in the community, service-based learning opportunities within the curriculum to gain hands-on, real-life experience (Alt et al., 2011; Kaf & Strong, 2011; Peterson et al., 2014; Ten Tusscher et al., 2020). Literature supports the use of service learning pedagogy in healthcare education, such as OT. However, limited research exists for OT academia regarding service learning. Ashby et al. (2016) established a need for further research into the curricula and other processes that help students form a professional identity, including service learning. Many published articles also demonstrate a need for a smooth transition from learning knowledge and skills to applying those in CEMs (Mollica & Hyman, 2016; Merritt & Murphy, 2019; Martinez-Mier et al., 2011), and service learning would bridge this gap. Within many emerging fields of OT practice, such as cancer care, the benefits of a service-learning approach have not been explored despite a call for specific education and training, including CEMs (Ten Tusscher, 2020; Baxter et al., 2017; Childress & Gorder, 2012). Further research is needed to evaluate the benefits felt by students after completing a course with a service learning component CEM. Purpose & Aims 7 The purpose of this study was to examine if the service learning experience in an entry-level OTD cancer survivorship elective shaped alumnis competence. This study aimed to evaluate the perceived competence of OTD alumni after taking the elective with an embedded community service learning component. Research Questions The research questions that guided this study were: 1. What is the experience of perceived competence that alumni in the OTD 620 elective describe? 2. What is the relationship between years of experience and the perceived competence scale? 3. What is the difference among practice settings on the perceived competence scale? 4. How do the themes generated from the focus groups support, modify, or contradict the perceived competence scale findings? Methods Research Design Researchers used a sequential explanatory mixed methods design (Feldhacker & Greiner, 2022) to examine perceived competence among OT alumni that took the cancer survivorship elective. We chose this method to promote data triangulation and provide sufficient data for interpretation (Guy et al., 2020). Quantitative data was gathered first and included a non-experimental, descriptive design with a five-point Likert scale survey to assess alumni's perceived competence. The qualitative portion followed a case study design and consisted of semi-structured, virtual focus groups and 8 interviews to further explain quantitative findings. Using this design, researchers examined trends from reported data and built upon the existing quantitative data (Guy et al., 2020). Course Description Since 2016, a cancer survivorship elective with a service learning component has been offered yearly to OTD students. The university offers a cancer survivorship elective with a service learning component to OTD students that are interested. The elective's structure reflected ELT (Kolb & Kolb, 2017), which includes four cyclical steps: concrete experience, reflective observation, abstract conceptualization, and active experimentation. The elective began with concrete experience, including several weeks of lecture content related to the basics of cancer, including OT's role within the cancer population, typical side effects of cancer treatment, and the impact of cancer on occupational performance. Students engaged in abstract conceptualization by reviewing evidence-based interventions to improve an individual's occupational performance and well-being. The instructor scheduled a meeting with the cancer support site to conduct a needs assessment each year of the elective, so the delivery of interventions varied year-to-year depending on the site's needs. For the final three to four weeks, the students engaged in active experimentation and reflective observation as they went to a cancer-specific community setting and performed various interventions under the instructor's supervision. Examples of these interventions included one-on-one evaluations, individualized interventions, group education, and delivery of a scripted, evidence-based intervention designed by the instructor, followed by small group problem-solving and follow-up each week. 9 Participants and Sampling Alumni were recruited by University of Indianapolis staff using class rosters from the elective in academic years 2016-2019 using non-probability convenience sampling. An uninvolved university staff member emailed a recruitment flyer describing the study to those eligible using email addresses retrieved from course alumni contact lists in order to maintain the alumnis anonymity. University staff also provided researchers with phone numbers from the contact lists used to perform cold calls to recruit alumni to participate. Alumni then filled out a quantitative survey, indicated their interest, and were contacted by a single researcher for focus group scheduling. Researchers collected names and email addresses of alumni from a survey question but de-identified data before the primary researcher analyzed data to reduce potential bias. The criteria for inclusion in the study were as follows: enrollment and participation in the OTD 620 Cancer Survivorship Elective ability to comprehend English ability to participate in virtual surveying and video calls Exclusion criteria included any alumni who did not take the elective. Data Collection Instruments/Measures Quantitative. Researchers developed a virtual survey consisting of demographic questions and a 15-item perceived competence scale using a five-point Likert scale in which 1 indicated no competence to 5 indicated expert competence. Questions were based on a questionnaire designed to evaluate the perceived competence of occupational therapists in mental health (Cottrell, 1990) and adjusted to be specific to 10 the cancer survivorship elective. The itemized survey included questions regarding evaluation, intervention, and foundational concepts/core knowledge in occupational therapy cancer care (see Table 1). The content validity of the survey was established by collecting feedback from oncology experts within the occupational therapy field (Taylor, 2017, p. 285-286). We collected names and email addresses of alumni from a survey question, but de-identified data before the primary researcher analyzed data to reduce potential bias. An uninvolved staff member sent the quantitative surveys via email to maintain the alumni's anonymity. Table 1 Quantitative Survey Questions on Perceived Competence of Alumni # 1 2 3 4 5 6 7 8 9 10 11 12 13 Question Describing OTs role in oncology and cancer survivorship to multidisciplinary and/or interdisciplinary healthcare teams. Describing OTs role in oncology and cancer survivorship to individuals with cancer and/or living beyond cancer. Engaging with cancer survivors in a community treatment setting. Understanding the impact of cancer culture on cancer survivors. Providing culturally competent care to cancer survivors from diverse backgrounds. Knowing the typical side effects of cancer and cancer treatments. Understanding the unique needs of cancer survivors. Evaluating cancer survivors symptoms and side effects of cancer treatment and their impact on occupational performance. Designing and leading educational and self-management groups or individual interventions with cancer survivors. Designing interventions for cancer survivors. Providing interventions to cancer survivors given the common side effects of cancer treatment to improve occupational performance. Facilitating self-management behaviors for symptoms of cancer and cancer treatment. (i.e. fatigue, cancer-related cognitive impairments etc.) Using evidence-based practice and providing proper educational, community, and technology resources (i.e. apps) for intervention support 11 14 15 for those with and living beyond cancer. Providing shared decision making (working together with the client to make decisions) on modifications and adaptations in daily activities to improve occupational performance of cancer survivors. Using current research findings relevant to the nature of oncology and cancer survivorship in interventions with cancer survivors. Qualitative. Focus groups and interviews allowed alumni to reflect on their experiences within the course and their current practice. We scheduled focus groups and interviews based on convenience. Individuals that could not attend the focus groups had an interview. Ideally, researchers aimed for five to eight participants in each focus group (Krueger & Casey, 2014). Researchers utilized a semi-structured interview guide (See Table 2), developed from the quantitative survey to ensure elaboration of answers in the focus groups (Schoonenboom & Johnson, 2017). Table 2 Semi-Structured Focus Group Questions 1. The cancer survivorship course was structured differently from year-to-year and some of you most likely took it during different years. Can you describe the structure of the cancer survivorship elective when you took it? 2. What does your current practice with cancer survivors look like? a. For those who have not answered yet, can we assume you have not worked with cancer survivors? 3. What aspects of what you learned in the elective carry through to your daily practice? 4. Can you briefly describe your learning experiences at the community site? 5. Can you explain if the hands-on experience in the community affected your practice? a. Did you learn any transferable skills? 6. Can you explain if you feel more competent in treating cancer survivors after taking the elective? a. Can you please expand on that feeling? 12 7. Reflecting on your current practice, what additional information would have been helpful for you to receive during the elective? 8. Can you explain if you feel more aware of the social norms within the cancer community after taking the elective? a. If so, how do you feel that awareness affects your practice? 9. Can you explain if you feel comfortable connecting cancer survivors with resources and education after taking the elective? 10. Has your experience with the cancer survivorship elective increased your interest in working with the cancer survivor population? Procedures After approval by the Institutional Review Board at the University of Indianapolis, researchers attempted to contact alumni multiple times via email and phone and gauge interest in participation. After agreeing to informed consent, alumni completed a Qualtrics survey which gathered descriptive data that were later de-identified to maintain anonymity. Researchers chose Google Meets as the virtual platform to conduct focus groups and interviews over the following weeks and months due to the programs audio and video recording features and transcription capabilities. Data was de-identified and transcribed verbatim using a Google Chrome extension and placed in a secure Google Drive. The primary investigator, the course instructor, was not present during focus groups or interviews to limit bias in responses. Additionally, the primary investigator only had access to de-identified transcripts and data to decrease potential bias in data analysis. Data Analysis A researcher, who was not the primary investigator, exported de-identified data into a password-protected Microsoft Excel spreadsheet. Quantitative data were analyzed using descriptive statistics, including independent t-tests, to compare 13 demographic and perceived competence variables (Chen & Price, 2020; Norman, 2010). Then, researchers categorized total calculated competence scores into four levels of competence, and an ANOVA was used to compare perceived competence data with specific descriptive data (see Table 3). Data from individuals who did not complete the full quantitative survey were not analyzed to maintain consistency across the results. Researchers analyzed qualitative data using thematic analysis framework from Roberts et al. (2019) to support rigor, credibility, and replicability. The framework consists of a multiphasic thematic analysis, including generating initial codes, searching for codes within the transcripts, reviewing codes, refining codes and subcodes, and developing a report (Roberts et al., 2019). Researchers analyzed qualitative data line by line using direct quotes from alumni and utilized constant comparative analysis throughout the coding process (Boeije, 2002). Researchers followed qualitative data analysis guidelines from Roberts et al. (2019), unanimously agreed on themes and sub-themes to ensure reliability and consistency, and re-read transcripts until no new themes were found indicating data saturation (Roberts et al., 2019). Researchers used a connection model of mixing both quantitative and qualitative data; the point of integration occurs in the results using a joint display (Schoonenboom & Johnson, 2017). For integrative analysis, quantitative data was transposed into qualitative data, coded, and then integrated into the existing qualitative data. Researchers coded Likert-scale questions and compared the quantitative data results to the qualitative results. Results 14 Quantitative Data Ten alumni completed the study's quantitative portion (n=10), and eight participated in the qualitative focus group/interview (n=8). All were white, between 25 and 48 years old, two were male, and eight were female. The alumnis current practice settings included inpatient acute care (n=4), inpatient rehabilitation (n=2), inpatient pediatrics (n=1), long-term acute care (n=1), burn unit (n=1), combined inpatient/outpatient care (n=1), and no longer practicing (n=1). Fifty percent of alumni had 1-2 years of experience (n=5), 40% (n=4) had 3-4 years of experience, and one alumnus had less than one year of experience. Alumni reported how frequently they worked with cancer survivors in current practice and the number of cancer survivors on their annual caseload. Sixty percent of the alumni often worked with cancer survivors (n=6), seeing one survivor each week, and 50% of alumni had more than 20 cancer survivors on their annual caseload (n=5). See Table 3 for Participant Demographics. Table 3 Participant Demographics Descriptive Data Number of Participants (n=) Gender Male 2 Female 8 Current Practice Settings Inpatient acute care 4 Inpatient rehabilitation 2 Inpatient pediatrics 1 15 Long term acute care 1 Burn unit 1 Inpatient/outpatient care 1 No longer practicing 1 Years of Experience Less than 1 year 1 1-2 years 5 3-4 years 4 Number of Cancer Survivors on Annual Caseload Less than 5 2 6-10 1 16-20 3 More than 20 5 Frequency Working with Cancer Survivors Rarely (1 survivor annually) 1 Occasionally (1 survivor monthly) 3 Often (1 survivor weekly) 6 Always (1 survivor daily) 1 In the 15-question survey, alumni rated their perceived competence in various knowledge and skills built into the elective from 1 (no competence) to 5 (expert competence). Total perceived competence scores were calculated for each alumnus by adding their rating of each question from 15 to 75 (see Table 4). Table 4 Alumnis Total Perceived Competence Scores Score Range Level of Competence Alumni Responses 16 15-28 Below Basic Competence 0% (n=0) 29-42 Basic Competence 10% (n=1) 43-59 Advanced Competence 80% (n=8) 60-75 Expert Competence 10% (n=1) Total perceived competence scores ranged from 41 to 63, indicating that overall, alumni of the elective feel that they have basic competence or above when working with the cancer population. Ninety percent of the alumni (n=9) perceived having an advanced or expert competence level. The mean scores for perceived competence for each question indicated that all alumni perceived having at least a basic level of competence in each aspect of working with cancer survivors. Table 5 shows the frequency of perceived competence scores by each question. Among alumni, the years of experience as an OT and total perceived competence exhibited a positive, yet weak, correlation of r(8) = 0.102, p = .778. Researchers performed a one-way ANOVA to compare the effect of the current practice setting on perceived competence scores. Some practice settings only had one participant response, so researchers recategorized data to run the one-way ANOVA. Both adult and pediatric acute care settings were combined into an inpatient acute care setting. Researchers merged settings such as burn unit, LTAC, and outpatient and inpatient into an other category. The one-way ANOVA revealed no statistically significant difference between at least two groups in the current practice setting (F(2, 6) = 0.519, p = .619). Researchers found that the mean value of perceived competence score was not significantly different between any of the three categories of practice settings when compared side-by-side after a post hoc Bonferroni test for multiple comparisons. 17 Table 5 Frequency of Perceived Competence Scores by Scale Item (n = 10) Frequency # Question No competence (n=) 1 Describing OTs role in oncology and cancer survivorship to multidisciplinary and/or interdisciplinary healthcare teams. 2 Describing OTs role in oncology and cancer survivorship to individuals with cancer and/or living beyond cancer. 3 Engaging with cancer survivors in a community treatment setting. 4 Understanding the impact of cancer culture on cancer survivors. 5 Providing culturally competent care to cancer survivors from diverse backgrounds. 6 Knowing the typical side effects of cancer and cancer treatments. Less than basic competence (n=) Basic competence Advanced competence Expert competence Mean Score (1-5) M (n=) (n=) (n=) 2 8 3.8 3 7 3.7 3 7 3.7 6 4 3.4 1 2 7 3.6 1 3 6 3.5 18 7 Understanding the unique needs of cancer survivors. 8 Evaluating cancer survivors symptoms and side effects of cancer treatment and their impact on occupational performance. 9 Designing and leading educational and self-management groups or individual interventions with cancer survivors. 10 Designing interventions for cancer survivors. 11 Providing interventions to cancer survivors given the common side effects of cancer treatment to improve occupational performance. 12 Facilitating self-management behaviors for symptoms of cancer and cancer treatment. (i.e. fatigue, cancer-related cognitive impairments etc.) 13 Using evidence-based practice and providing proper educational, community, and technology resources (i.e. apps) for intervention support for those with and living beyond cancer. 1 1 1 2 6 1 3.7 2 8 3.8 3 6 3.5 4 6 3.6 3 6 3.5 4 6 3.6 2 8 3.8 19 14 Providing shared decision making (working together with the client to make decisions) on modifications and adaptations in daily activities to improve occupational performance of cancer survivors. 15 Using current research findings relevant to the nature of oncology and cancer survivorship in interventions with cancer survivors. 4 4 2 3.8 7 2 1 3.4 20 Qualitative Data Eight alumni participated in focus groups or individual interviews after completing the quantitative perceived competence survey. Researchers ran three virtual focus groups and conducted two interviews based on the availability of the alumni. Analysis of the focus groups revealed six main themes: 1. Hands-on experience 2. Perceived gain of knowledge and skills 3. Deeper understanding of the community setting and cancer culture 4. Gained confidence in working with cancer survivors 5. Ability to apply the course to current practice 6. Interest in the cancer survivorship field. See Table 6 for quotes from alumni supporting each theme. Theme 1: Hands-On Experience Alumni in the focus groups felt that hands-on experience through the CEM portion of the elective was crucial to their learning following the lecture portion. One alumnus talked about how the hands-on experience solidified aspects of treatment in their mind due to the trial by fire nature of direct client care, and another shared it helped them gain perspective on what they had learned in the classroom. A subtheme of the hands-on experience was the context of the cancer-specific community site, as alumni felt that it enhanced their understanding of survivors stories and experiences. Alumni thought the hands-on experience was crucial to developing skills such as problem-solving, intervention planning, and advocacy. They also felt that interacting with actual clients in the community allowed them to understand the clients' interpersonal, 21 emotional, and social experiences. Witnessing empathetic peer support that is key to the cancer survivorship community was a growth opportunity for alumni. See section 1.0 of Table 6 for quotes supporting hands-on experience. Theme 2: Perceived Gain of Knowledge and Skills Through the cancer survivorship elective, alumni reported a gain of knowledge and skills relating to OT practice and treating cancer survivors. Subthemes included increased knowledge, client-centered care, adaptability, shared decision-making, empathy, self-guided learning, evidence-based practice, and therapeutic use of self. During focus group sessions, alumni discussed feeling more competent in treating cancer survivors. They noted that interacting with different clients in this setting helped further their skills in providing client-centered care. Alumni felt that their knowledge of cancer survivors' differing needs increased throughout the elective, improving their skill of adaptability. One alumnus mentioned carrying over the skills of self-guided learning and evidence-based practice from the cancer survivorship setting into their current practice setting, including finding and providing client resources. See section 2.0 of Table 6 for quotes supporting this theme. Theme 3: Deeper Understanding of the Community Setting and Cancer Culture A deeper understanding of the community practice setting following the elective was expressed in the focus groups. This theme included the importance and uniqueness of peer support amongst cancer survivors and social norms surrounding the cancer community. Alumni also had a deeper understanding of the stigma surrounding cancer and how to deal with other aspects of cancer culture after taking the elective. They particularly noted healthcare practitioners' discomfort around cancer and how they 22 often felt the need to take the lead in interprofessional education about cancer. Finally, alumni discussed a better understanding of cancer's short- and long-term side effects after having seen them first-hand at the community site. See section 3.0 of Table 6 for quotes supporting the alumnus' understanding of the community setting and cancer culture. Theme 4: Gain Confidence in Working with Cancer Survivors Along with new knowledge and skills, alumni in the focus groups reported that they felt their confidence increased after working with cancer survivors. Sub-themes related to gained confidence included advocacy, increased comfort working with survivors, and a better understanding of OTs scope of practice, including when to make referrals. Overall, alumni described feeling more comfortable providing OT care to cancer survivors following the CEM portion of the elective. They felt better prepared to address the topic of cancer with future clients after engaging with cancer survivors, noting that there are some instances in their current practice where they are the most knowledgeable about cancer care and survivorship in a given care team. Reflecting on the hands-on experience, alumni reported that they overcame the nerves of discussing a cancer diagnosis in an individual session with a client. One alumnus mentioned that they felt they would need a specialty in that area despite what was learned in the elective if they were to work solely with the cancer population. See section 4.0 of Table 6 for supporting quotes for this theme. Theme 5: Ability to Apply Course to Current Practice Alumni expressed that they have been able to apply what they learned and experienced during the elective course to their current practice as occupational 23 therapists in varied practice settings. For example, an alumnus felt that strategies learned in the elective helped build up their practice across many populations. At the same time, another mentioned the solid foundation the elective gave them, supporting the subtheme of transferability of skills across settings and populations. Other alumni discussed using energy conservation strategies learned during the elective with current clients. Alumni discussed the subtheme of using resources and the importance of providing community resources to clients to facilitate community support. However, two alumni reported that it has been difficult for them to provide community resources in their current practice due to limited time and referral options in acute care, as well as practicing in states with fewer community resources than where they were educated. In addition to using resources to support cancer survivors, alumni discussed the importance of educating the client, caregivers, and other healthcare professionals. Alumni acknowledged the importance of addressing cancer, even as a secondary diagnosis, and recognizing how it can impact the clients life. Alumni also mentioned educating other healthcare professionals on the needs of cancer survivors, such as giving them rest breaks during activity, as an actual application to current practice. See section 5.0 of Table 6 for quotes supporting this theme. Theme 6: Interest in the Cancer Survivorship Field Finally, multiple alumni reported increased interest in working with cancer survivors after graduation. Most stated that their interest in working with this population increased after taking the elective. In contrast, several indicated that they had a personal connection to cancer, which fueled their interest in the elective in the first place. However, others stated that working exclusively with the cancer population would 24 be too emotionally draining, so they would prefer more variety in their caseload. See section 6.0 of Table 6 for quotes about alumnis interest in the cancer survivorship field. Course Recommendations Researchers asked alumni to provide recommendations to improve the course and suggest changes or additions that would have increased the benefits gained from participation. These recommendations were: expanding the lecture content to include information about the most common diagnoses and symptoms in cancer care, the cancer treatment and cancer care continuums, planning and utilizing assessment tools and interventions that are appropriate for different stages of severity and treatment (e.g., at time of the first diagnosis versus when entering remission), and how to connect both practitioners and patients with appropriate support and resources. 25 Table 6 Supporting Quotes of Alumni for Themes from Focus Groups Theme Quotes from Focus Group to Support 1.0 Hands-on Experience 1. So being able to kind of play with that [community] environment and . . . motivate others into like Hey you're not alone. But I'd say that was the coolest aspect was seeing patients kind of interact with one another, and you know they kind of feed off each other where I've been there before or are easily able to be empathetic toward one another. 2. It's better if you just kind of trial by fire that and just experience it [direct client care] because then you're not gonna forget it. 3. So I got to apply those problem solving skills that the graduate program teaches us. But also I got to get first-hand experience on how we can modify and adapt some of the cancer survivors activities of daily living in order to promote their independence . . . And I think just having that experience there it kind of helped me kind of initiate and start the process of thinking about those activity analyses we were taught in graduate school and how we can just take little tweaks and changes into an activity of daily living or a simple strategy in order to maximize their independence. I also learned a lot about the power of advocating and giving the patient or the cancer survivors their power to advocate for themselves. 4. I think the benefit of going to the cancer support community for our class and me personally, was just to see the impact, emotionally and socially that cancer can have on someone's life. 5. So I know having that hands-on experience and interacting with them in particular was an incredible learning opportunity that shaped my overall perspective of this process. 6. It was an actual person with an active condition and they were coming to us as like a free resource, but it really felt like I had the opportunity just to use my skills and see what I could do to help the person. And that's something that I've taken with me from that. It might have been a short experience, but yeah, it was definitely valuable. 2.0 Perceived Gain of Knowledge and Skills 1. But this [the cancer survivorship elective] was the first class where I was able to kind of get creative on my own and try things and see what would happen and I think that was really valuable. 2. I definitely feel more competent in dealing or treating cancer survivors. 3. Just getting to know them and talk to them on a personal level helped me further in my practice. 4. I think it [the cancer survivorship elective] allowed us to like do a lot of self-guided learning and learn the importance of evidence-based practice and carry that over to like the education with the different people that attended and just carry that into like practice just getting that foundation and learning different things 26 and resources that you could provide people. 5. I think since I was given the opportunity through this elective course since I was able to get hands-on experience like advice, education, I feel like it has made me more competent. It's also made me more accountable, where all cancer survivors are completely different. 3.0 Deeper Understand ing of the Community Setting 1. If one of them [the CSC clients] is having a hard day they can relate and they can kind of you know go at a different pace and kind of bring them up and motivate them. I know we all can kind of relate like if you're having a bad day and someone's, you know, trying to help cheer you up a little bit and make your day better. And, you know, it can be little things like that. and you know, a lot of the patients verbalized that they felt that way. 2. The community setting is a great place to learn that because these most of these patients are past their acute treatment and are in remission and they're still having some sort of side effect or problem that's affecting them. So, getting to see that's something that does last as long, if not longer than treatment and you know, can be years later was definitely something that's more of a norm that I wasn't aware of. 3. I think a lot of times it [cancer] might . . . be brushed over almost with some patients. Like it's just in their [patients] list of things that they have going on, cancers one of them. And sometimes I feel like people even have a difficult time like bringing it up, like they dont want to talk about it. Even healthcare practitioners, just kind of like avoid it. 4.0 Gained Confidence in Working with Cancer Survivors 1. So I feel like that [classroom knowledge] helps me be more confident in approaching the subject, especially for the patients who initially find out [about their diagnosis]. . . . They [the CSC clients] had cancer and you know I can be better prepared and more confident and competent in kind of going into that and meeting my patients, where they're at today? 2. So, it [the cancer survivorship class] helped me personally get over my nerves. Those first few sessions I was very nervous. You know making sure like you know Do I have everything I need? Am I gonna mess this up? But kind of just you know, building that confidence in myself as an OT at that time as a student . . . And I definitely think it's helped with my confidence with survivors in general like working with them when they come in for the one-on-ones. Like getting to say, you know, . . . I've had more experience than just that working with cancer survivors and I've got to see, you know, a range of the effects that it can have on survivors. So I think it's definitely helped a lot with my practice in general. 3. Yes. It definitely led to my interest and just my comfort too with working with that population. 4. Sometimes you might be the one who knows the most about just that diagnosis and how it's impacting that person 5. I think in the elective that having that time to actually be with real people, real cancer survivors, and kind of work with them really provided a good opportunity that way when I went into practice, it was something that I was already very comfortable with even like as a student in my fieldwork. 27 5.0 Course Application 1. So, it [strategies learned from the course] really helps kind of build up your practice with whatever population you're working with. 2. I still use a lot of the energy conservation strategies that the instructor taught us. I actually still actually use the handout that we created as a group in her elective that I give out to survivors, kind of just using the therapeutic use of self that the instructor pushed a lot. 3. I don't think until this elective I understood the power of community resources and the power community support can have on a patient, especially a cancer survivor. Just being able to help those survivors or even patients in any way when they go home . . . I feel the more resources the better and this gives them the the power to delegate and the power to take back their lives where they felt cancer took it [control] away from them. 4. It [the cancer survivorship elective] provided a really good foundational component to be able to go out and then learn further into whatever setting you practice in after that. 5. But even if that [cancer] is not their primary diagnosis or why we're seeing them, I try to address that [cancer] and how it's impacting their occupations, whether it's the fatigue, lymphedema, decreased sleep habits. . .Trying to incorporate that in relating it back to like, You might be here for something else, but this still is part of your life. And how can we best address that to meet your daily needs? 6. I do try to educate family or staff members about how to best like meet a person's needs and giving them [cancer survivors] breaks instead of trying to rush them through whatever they're doing which can be hard in healthcare these days. 6.0 Interest in Field 1. I think I, it kind of started my competency in the area. Before I took her elective, I had no interest really in survivorship. . . . . It definitely fueled my interest in it, so that I continued with it in my capstone and now in my career and doing more research, and I wouldn't say, like, everything I know now is because of that, but it definitely jump started it, and gave me the foundation that I felt competent and confident enough that I wanted to continue with it. 2. I have had cancer survivors on both sides of my family so I already had that interest and passion. It was one of the reasons why I wanted to become an OT but taking this cancer survivorship elective definitely heightened my interest for the population. I did my capstone on it. Anytime we get an oncology patient, I'm the one who sees them therapy wise at my place just because I know a lot and they have that special population place in my heart. I just love working with them and trying to help them through their battle. 28 Integration of Mixed Methods and Visual Diagram There were common intersections between qualitative themes seen throughout the data. Hands-on experience gave alumni a better understanding of the community setting, better awareness of cancer culture, and more comfort working with cancer survivors. The elective also gave alumni the confidence to discuss cancer with other healthcare providers, clients, and families who might be uncomfortable with it. Alumni learned skills in the elective, such as group-based education, that can be applied beyond the cancer population to all populations in alumnis current practice settings. Additionally, knowledge, skills, and a better understanding of the cancer culture through hands-on experience in the course fostered alumnis confidence with application into their current practice. Finally, alumni felt their gained knowledge, skills, and cultural awareness was transferable to current practice. Upon qualitative and quantitative data integration, researchers found multiple areas of agreement between all components (Table 7). Alumni reported increased competence in qualitative themes of a gain of transferable knowledge and skills along with a better understanding of community setting and cancer culture, where they said basic to above basic competency. Alumni also reported above or advanced competency in confidence in working with cancer survivors and applying course content to practice. The Integrative Logic Diagram (Figure 2) is a visual representation of connections between areas of agreement in our data. During and after participation in the CEM, alumni gained transferable knowledge, skills, and a deeper understanding of the community setting and the cancer culture. These contributed to greater confidence in working with cancer survivors, which empowered them to apply course material and 29 experience in their current practice. Throughout all of this, the alumni experienced an increased perceived competence in treating cancer survivors. Overall, the Integrative Logic Diagram in Figure 2 demonstrates qualitative and quantitative data integration as they correspond with increased perceived competence after participating in the cancer survivorship elective. Table 7 Integration Coding of Mixed Methods Analysis Theme (Qualitative) Survey Question (Quantitative) 1. Gain of Transferable Knowledge and Skills - Alumni gained knowledge and client-centered skills required for clinical practice from the elective. - Take-aways from the elective include adaptability, empathy, shared decision making, therapeutic use of self. Corresponding Survey Questions: 1, 2, 10, 11, 12, 14 - Above basic competency was found for the skills of describing OTs role, designing interventions, and providing interventions. - Alumni reported high levels of perceived competence for shared decision making. 2. Better Understanding of the Community Setting and Cancer Culture - Alumni gained a better understanding of treatment in the community setting, whether it be in a group or individual sessions, and overall knowledge of cancer culture from the elective. Corresponding Survey Questions: 3, 4, 5, 6, 7 - Majority of alumni reported above basic competence for providing culturally competent care and understanding cancer culture and cancer-specific side-effects. - More alumni reported basic competence for understanding the impacts of cancer culture on cancer survivors than above basic competence. 3. Gain of Confidence in Working with Cancer Survivors - Alumni showed an increase in confidence and competence of skills while working with cancer survivors after completion of the Corresponding Survey Questions: 8, 9 - Most alumni reported advanced competence for evaluating clients with cancer and cancer survivors. - Majority of alumni reported above average competence in designings 30 elective. and implementing groups for cancer survivors. 4. Ability to Apply Course to Current Practice - Alumni stated application of knowledge gained from course content such as learned conditions or common symptoms to guide current treatment sessions. - Resources or handouts created during the elective are utilized in current practice. Corresponding Survey Questions: 13, 15 - Almost all alumni reported advanced competence for using evidence-based practice and providing resources as a means of intervention support for cancer survivors. - Each alumnus reported at least basic competence in using current research within interventions for cancer survivors. 5. Increased Interest in the Cancer Survivorship Field - Alumni showed an increased interest and comfort in working with cancer survivors following the completion of the elective. No corresponding survey question. Corresponding Interview Question: 10 Figure 2 Integrative Logic Diagram 31 Discussion This study adds to the current literature on cancer care and curriculum development within OT programs, supporting and expanding on the previously-studied benefits of CEMs. Previous researchers found that CEMs improve self-confidence, increase cultural awareness, and improve professional development (Jacobs, 2020; Keane & Provident, 2017; Mu et al., 2016; Peterson et al., 2014). Yet from this study, we found that CEMs are associated with an increased skill set and knowledge transferred into course alumni's current practice. Alumni reported feeling that the elective improved competence in working with cancer survivors. Its design reflected the ELT (Kolb & Kolb, 2017), suggesting that using ELT for curriculum design benefits learning. Both quantitative and qualitative findings reflected that the service-learning course component is associated with alumni's feelings of competency, preparedness, and confidence in practice. Ninety percent of the alumni who took the cancer survivorship elective reported having advanced or expert competence in working with cancer survivors upon entering into practice, suggesting that the elective could have helped prepare them. The findings of Kaf and Strong (2011) further support this elective design, who stated that embedding a service learning component into a pediatric audiology course increased student interest, readiness to evaluate clients, comfort level with patient care, and general knowledge of that specific field. Finally, researchers found a weak, positive correlation between alumnis years of experience in practice and competence scores, implying that with more years of experience, alumni feel more confident working with cancer survivors. 32 Due to the low number of participants in the study, there was not a statistically significant difference in competence scores across alumnis current practice settings. Despite the statistical insignificance of the data, qualitative results suggest improved skills such as adaptability, shared decision-making, empathy, self-guided learning, evidence-based practice, and therapeutic use of self. Even alumni who were not working directly with the cancer population at the time of data collection noted that they treat patients who have cancer as a secondary diagnosis and feel more prepared to work with cancer survivors because of the hands-on experience within the elective course. A theme that emerged from focus groups and interviews is alumni having a better understanding of the community setting and cancer culture. Alumni in the elective expressed increased awareness of social norms that exist in community cancer culture, and an increased confidence in navigating these norms in current practice situations. These results are similar to those in existing literature highlighting CEMs impact on cultural competence. Results from Keane & Provident (2017), Merrit & Murphy (2019), and Mu et al. (2016) also indicate that service-learning courses can increase confidence in working with diverse populations and improve overall cultural competence. These studies integrated international service learning opportunities and showed that students had increased cultural awareness following cultural immersion, supporting hands-on experience in CEMs. While alumni of the elective didnt have an international experience, they did have the chance to be immersed into community cancer culture and expressed how this impacted their cultural competence in working with individuals 33 with cancer. Increased cultural competence following CEMs contributes to practitioners having a more holistic approach to patient care. Other skills gained from the cancer survivorship course that carried over to alumnis current practice include increased confidence, empathy, and therapeutic use of self. In addition to self-awareness and self-efficacy, these skills aligned with personal outcomes uncovered in a literature review investigating student development in service learning (Myers, 2020). Therefore, including CEMs in curricula also supports students self-development and professional identity. Limitations Researchers encountered several limitations while completing this study. After an extensive review of the literature, researchers did not find an appropriate survey to measure the perceived competence of alumni. Therefore, researchers developed a new scale to measure perceived competence, modeling the structure and scoring after an existing scale (Cottrell, 1990). However, due to time constraints, the survey needed to be thoroughly tested for reliability and validity before administration which could impact the dependability of our quantitative results. Researchers had a small number of individuals who qualified to participate in this study, which limited our results' generalizability, significance, and strength. The ideal number of participants required for a focus group was not achieved due to scheduling conflicts, running the study during a global pandemic, and a limited number of potential participants. Interviews did not provide the opportunity for alumni collaboration, potentially impacting data saturation (Krueger & Casey, 2014). Finally, the professor 34 who taught the elective was involved in the coding and analysis process, creating a potential for confirmation bias. Impact on Occupational Therapy Education This study shows that, after participating in a cancer survivorship elective with a CEM service-learning component, entry-level occupational therapists felt competent and confident in their ability to treat cancer survivors, applying the knowledge and skills gained through the CEM. The findings of this study suggest that educators should consider building CEMs, such as service learning, into OT courses to support competence and confidence in the future practice of OT students. Alumni reported that being in this course increased their interest in practicing with cancer survivors and provided them with a better understanding of the scope of OT. The elective also helped them better understand how interprofessional teamwork benefits the patient. These skills learned through hands-on experience are crucial for the future support of OT in cancer care. Therefore, future educators are encouraged to consider embedding CEM components into cancer survivorship courses to foster perceived knowledge, skills, cultural awareness, confidence, and student interests. Future Recommendations Baxter et al. (2017) recommend using CEMs to enhance students learning and suggest integrating cancer care education and courses into OT curricula. Therefore, the creation and implementation of further cancer survivorship courses in OT education should utilize a service learning approach to increase knowledge and confidence in an emerging practice field. 35 Future research about the effect of CEMs in OT education should utilize pre- and post-test measures of perceived competence to grasp these courses' impact better. It would also be beneficial to compare the results of these measures between alumni who have taken the course and those who have not. For courses of this type created in the future, we recommend implementing the course improvement recommendations provided by alumni as described in the Results section of this paper. Additionally, this course took place over only half of a semester. We recommend instead including more course content and patient interaction over an entire semester. Conclusion The results of this study suggest that implementation of CEMs in OT education according to the ELT (Kolb & Kolb, 2017) provides a deeper understanding of the community setting, increased interest in emerging fields of practice, and improved confidence in treatment as an entry-level practitioner. Alumni reported increased confidence, interest, and understanding of treating within an emerging field of practice and reported the benefits of the hands-on model. Graduate-level OT programs should implement CEMs in their curricula to gain knowledge and skills as entry-level practitioners and for transferability into future practice. More research using various forms of CEM in OT curricula is needed. 36 References Alt, K. L., Nguyen, A. L., & Meurer, L. N. (2011). The effectiveness of educational programs to improve recognition and reporting of elder abuse and neglect: A systematic review of the literature. 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Retrieved May 7, 2022, from https://www.statology.org/how-to-report-anova-results/ ...
- Creator:
- Taryn Springgate, Megan Yingling, Sierra Kern, Ashton Williams, Shelby Cash, and Kate Kelley
- Date:
- 2022-12-16
- Type:
- Capstone Project
-
- Keyword matches:
- ... Building the Screen of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS): A Delphi Study Taylor Henson, Jordan Romero, Kenzie Salzbrenner, Daria Seccurro, Shanele Tyler, and Michael Wroblewski December 2, 2021 A research project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the research advisor: Dr. Katie M. Polo, DHS, OTR, CLT-LANA Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 1 of 61 A Research Project Entitled Building the Screen of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS): A Delphi Study 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: Taylor Henson, Jordan Romero, Kenzie Salzbrenner, Daria Seccurro, Shanele Tyler, and Michael Wroblewski Doctor of Occupational Therapy Students Approved by: 2021-12-15 Research Advisor Date Accepted on this date by the Chair of the School of Occupational Therapy: 2021-12-15 Kate E. DeCleene Huber, OTR, MS, OTD Chair, School of Occupational Therapy Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Date Page 2 of 61 TABLE OF CONTENTS Page ACKNOWLEDGEMENTS 3 CONTRIBUTORS 4 PLAN FOR DISSEMINATION 4 LITERATURE REVIEW 5 ABSTRACT 29 RESEARCH PAPER 31 CHAPTER I. INTRODUCTION 31 II. METHOD 32 III. RESULTS 37 IV. DISCUSSION 41 V. CONCLUSION 45 APPENDIX A 58 APPENDIX B 59 APPENDIX C 60 APPENDIX D 61 Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 3 of 61 Acknowledgements Beth Ann Walker, Cancer survivor panelists from Round 1 of Delphi study Contributors Student Contributors: Cassidy Stinson, Moriam Olorunoje, Kayla Mitchell, Tara Nastoff, Isabel Mazanowski & Ally Delks Expert Panelists: Kathleen Lyons, Sheila Longpr, Francie Baxter, Naomi Anderson, Heidi Spyridakis, Jennifer Hayter, Donna Kelly, Molly Sleigh, Karen Smith, Asfia Mohammed, Alix Sleight, Megan Turner, Lauro Antioco Munoz, Leslyn Keith, Jennifer Wahowski, Theresa Smith, Jennifer Cook, Rose Duffy, Ann Marie Potter, Nicole Scheuman, Karen A Enlow, Jennie Marti Plan for Dissemination Our research team has been accepted to present this information at the AOTA Inspire conference in San Antonio, Texas in April of 2022. Our team also plans to disseminate this information at the Scholars Showcase in April of 2022 for those members who were unable to attend the conference. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 4 of 61 Literature Review As of 2016, researchers estimated that there were 15.5 million cancer survivors in the United States and that by the year 2026, that number will rise to 20.3 million (National Cancer Institute, 2018). Researchers define a cancer survivor as anyone with or who had cancer from diagnosis to the end of life (National Cancer Institute, 2019). As the number of cancer survivors increases, it is essential to consider what factors may impact their quality of life following cancer treatment. Researchers indicated that quality of life was inversely related to occupational performance deficits, which can occur due to side effects of cancer treatment such as fatigue, pain, sensory loss, and cognitive impairments (Brekke et al., 2019). Occupational performance is the accomplishment of an occupation, a purposeful activity that has meaning to the individual (American Occupational Therapy Association, 2014). In 2006, the Institute of Medicine (IOM) called for the implementation of cancer survivorship recommendations to improve care coordination, facilitate follow-up care, and assure patient outcomes (Stricker et al., 2011). The American Society of Clinical Oncology (ASCO) Survivorship Care Plan (SCP) is a document that includes a treatment summary and follow-up care plan to improve communication and coordination of care for cancer survivors. The ASCO SCP assists patients in tracking check-up appointments, reviewing follow-up tests, mapping out possible late side effects of treatment, and providing ideas for staying healthy (Centers for Disease Control and Prevention, 2018). The ASCO SCP addresses concerns related to emotional and mental health, physical functioning, memory or concentration loss, fatigue, parenting, school/work, and sexual functioning. However, the SCP in care coordination does not include various life activities (occupations) that researchers found cancer survivorship impacts (American Society of Clinical Oncology, 2019). Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 5 of 61 Despite the implementation of the ASCO SCP, researchers have indicated that a lack of coordination in survivorship care can contribute to poor care delivery and adverse patient outcomes (Klabunde et al., 2013). Researchers have recommended an occupational participation approach to address gaps in cancer survivorship care (Yim Loh & Jonsson, 2016). Although survivors face performance deficits resulting from cancer treatment, there is a lack of referral to occupational therapy services. Survivorship care requires an occupational participation approach which includes regular screening for occupational therapy services. Currently, no validated screening tools indicate the need for referral to occupational therapy in survivorship care. However, the Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) tool is available but requires a true consensus from experts in the field to indicate which items researchers should include in its final rendition. The purpose of this study was to formally validate The Screening of Cancer Survivorship-Occupational Therapy Services (SOCS-OTS), which researchers developed for oncology team members to identify those that need occupational therapy services due to occupational performance limitations in survivorship care. Side Effects of Cancer Treatment Although there is currently no developed screening tool indicating the need for referral to occupational therapy in survivorship care, there are many side effects of cancer treatment that may impact survivors occupational performance. Larkey et al. (2015) performed a quantitative randomized control trial for breast cancer survivors with cancer-related fatigue (CRF). Researchers selected 87 female breast cancer survivors for this study, of which 49 participated in the tai-chi intervention group. Researchers then administered the exercises for a total of 24 weeks for 90-minute supervised periods twice a week for 12 weeks, followed by 30-minute unsupervised periods five times a week for an additional 12 weeks. Researchers utilized the Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 6 of 61 Fatigue Symptom Inventory (FSI), in which participants rated fatigue on a scale of zero to ten, with a three or higher score considered a meaningful level of fatigue. The intervention group showed a moderate decrease in CRF after the supervised activities. The scores during the individual intervention were consistent with those reported at the end of the supervised portion of the intervention, suggesting a lasting effect for decreased CRF due to tai-chi exercise in cancer survivors (Larkey et al., 2015). Johansson et al. (2013) similarly performed a quantitative, randomized control trial that utilized water-based intervention measuring shoulder range of motion for breast cancer survivors with chronic lymphedema. Researchers recruited 29 female survivors for participation in the study, with 15 participating in the intervention group and 14 participating in the control group. The intervention group completed water-based exercise three times a week for eight weeks. The participants either swam or performed specific shoulder exercises shown to them by an instructor during the allotted time. The control group received no intervention treatment. Median changes for flexion and external rotation were significantly larger in the intervention group. Flexion median change increased by seven degrees, and external rotation median change increased by thirteen degrees. Researchers did not observe significant increases in the control group (Johansson et al., 2013). Salerno et al. (2019) performed a randomized crossover trial study to measure the effects of cancer-related cognitive impairment (CRCI) in breast cancer survivors after aerobic exercise training. Researchers recruited 29 participants for this study and conducted three sessions. The first session consisted of determining the max heart rate of participants. In the second session, participants completed a cognitive battery test followed by either 30 minutes of exercise on a treadmill or 30 minutes of sitting. They then completed a second cognitive battery test following Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 7 of 61 the intervention. Out of the recruited participants, 15 performed walking during the second session, while 14 performed sitting during the second session. Researchers reversed the groups for the third and final session. Participants showed a significant improvement in spatial working memory and processing speed upon the conclusion of the exercise intervention (Salerno et al., 2019). Similarly, Baumann et al. (2011) used physical activity to explore the effects of CRCI in breast cancer survivors. Researchers found significant improvements in intelligence and memory in the exercise intervention group (Baumann et al., 2011). Kneis et al. (2019) incorporated balance and endurance training in a quantitative randomized control designed to study the effect on neuropathic symptoms. The intervention group performed both balance and endurance training, while the control group performed only endurance training. Researchers selected 50 cancer survivors, with 25 participating in one-onone interventions lasting 60 minutes in length. Participants completed endurance training for 30 minutes on a stationary bicycle and 30 minutes for balance training. The control group included 25 survivors. Modules in the European Organization for Research and Treatment of Cancer Quality of Life (EORTC QLQ-C30) measured chemotherapy-induced peripheral neuropathy (CIPN) severity in sensory, motor, autonomic, and upper and lower extremity categories. Upon conclusion of the study, the intervention group had significantly better scores in the EORTC QLQ-C30 in all categories measured for CIPN purposes, indicating a significant reduction in reporting the symptoms of CIPN reported (Kneis et al., 2019). These common side effects of cancer treatment, including CIPN, CRF, CRCI, and lymphedema, can impact the occupational performance of cancer survivors. Jung et al. (2017) used the Brief Fatigue Inventory (BFI) to measure the severity of fatigue, the Hospital Anxiety and Depression Scale (HADS) to measure levels of anxiety and Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 8 of 61 depression, and the EORTC QLQ-C30 to target the patients emotional, cognitive, social and role functionalities of lung cancer survivors. Researchers reported that approximately 332 individuals of their initial outreach of 830 survivors agreed to complete the questionnaires (Jung et al., 2017). Researchers utilized a univariate analysis of sociodemographic factors to record the impacts on fatigue and anxiety, such as comorbidities, age, and educational level. The researchers concluded that fatigue and depression had the most significant effect on lung cancer survivors (Jung et al., 2017). Fitch et al. (2020) surveyed a total of 13,258 Canadian respondents in a transitional study asking about unmet needs and experiences between the first and third year post-cancer treatment. The researchers survey contained open and closed-ended questions focused on the participants' health, medical history with cancer, follow-up cancer care, and additional topics. Following the survey, researchers initiated interviews to gain information on the understandability and meaningfulness of the survivorship experience (Fitch et al., 2020). Roughly 87% of the respondents experienced at least one physical symptom post-treatment, and 58% indicated three or more. Of the participants, 33% were under the impression that their symptoms were expected with no solution, which led to not seeking additional help (Fitch et al., 2020). Those that expressed physical concerns noted the following: sexual function/activity (45%), hormonal/menopause or fertility (37%), and fatigue/tiredness (33%). Gastrointestinal problems (63%) and pain (61%) were the symptoms for which respondents most frequently sought help. However, more than onethird of respondents who sought help indicated that it was difficult to obtain for most of their symptoms. Seeking help for changes in concentration and memory was particularly challenging (48% experienced difficulty) (Fitch et al., 2019, p. 2980) Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 9 of 61 Krok-Schoen et al. (2018) utilized a survey design to explore the influences that inhibited fear of cancer recurrence (FCR) among older female cancer survivors. A total of 4,259 participants with different types of cancer completed an online-based survey that recorded cancer type and treatment data (Krok-Schoen et al., 2018). Researchers measured participants' FCR using an eight-item Cancer Worry Scale (CWS). Participants reported general psychological well-being, physical symptoms, and quality of life. Researchers found that nearly 16% of the participants reported a high FCR based on factors like chemotherapy, high symptom scores, and older age (Krok-Schoen et al., 2018). Similarly, Galica et al. (2021) found that as the number of cancer survivors continues to increase, FCR is the most significant factor limiting this population. FCR is associated with an overall decrease in quality of life, increased anxiety, and higher rates of depression (Galica et al., 2021). The researchers indicate that previous findings show cancer survivors want help to cope with their FCR; however, this concept is still under-recognized, and the needs remain unmet (Galica et al., 2021). The researchers found that survivors within this population are experiencing unmet and unrecognized needs, warranting oncology nurses to assess, care for, and provide intervention for these increasing numbers of patients (Galica et al., 2021). Impact on Occupational Performance Side effects of cancer treatment impact every category of occupation, including ADLs (Activities of Daily Living), IADLs (Instrumental Activities of Daily Living), rest and sleep, work, leisure, and social participation (American Occupational Therapy Association, 2014). First, experts define ADLs as activities directed at taking care of one's own body, such as sexual activity, toileting and toilet hygiene, feeding, functional mobility, and personal hygiene and grooming (American Occupational Therapy Association, 2014). Hwang and colleagues (2015) Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 10 of 61 investigated cancer survivors functional deficits and their impact on quality of life. The researchers conducted a one-group, nonrandomized study. They had 68 cancer survivors respond to the Post Cancer Outcome Survey (PCOS) and Cantril's Self-Anchoring Striving Scale to measure perceived functional deficits and quality of life. On the PCOS, cancer survivors frequently reported that sexual activity was an occupation in which they experienced difficulty due to a lack of sexual enjoyment from decreased sexual drive, negative body image, and discomfort during sex following cancer treatment. Researchers found that the occupational performance limitations survivors faced were associated with reduced quality of life (Hwang et al., 2015). Cancer survivors also listed toileting and toilet hygiene as an occupational performance deficit in research conducted by Marciniak et al. (1996). Researchers identified functional impairments resulting from cancer and its treatment among 159 cancer survivors using the Functional Independence Measure (FIM) in a non-experimental, retrospective study at the Rehabilitation Institute of Chicago. Cancer survivors indicated that they experienced gastrointestinal problems such as constipation, diarrhea, and incontinence following treatment which impacted their toileting occupations (Marciniak et al., 1996). Lastly, cancer survivors reported that another area of occupational performance deficit was functional mobility. Lyons and colleagues (2018) used a mixed-methods sequential explanatory approach to identify and reduce disability among cancer survivors. Participants in the study were 65 years and older and were cancer survivors who were experiencing disability due to cancer treatment. Researchers used the Health Through Activity Program intervention, which required participants to reflect on pleasurable and beneficial activities to their physical and mental health, create goals to engage in said activities, and then reflect on their experience and Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 11 of 61 success with those weekly activities with an occupational therapist. During the completion of the intervention, survivors reported that functional mobility, such as walking, was an area of performance deficit due to side effects such as sensory loss, pain, and edema (Lyons et al., 2018). These findings indicate that survivors face occupational performance deficits in the occupational category of ADLs due to the side effects of cancer treatment. ADLs are impacted by the effects of intensive cancer treatment, but IADLs are also negatively influenced. IADLs are activities that benefit daily living throughout the community and home and involve more complex interactions such as child-rearing, home establishment and management, health management and maintenance, and driving and community mobility (American Occupational Therapy Association, 2014). Hwang et al. (2015) and Lyons et al. (2018) found that side effects negatively influence ADLs. Researchers also discovered performance issues in health management and maintenance, an IADL. Cancer survivors indicated difficulties exercising/working out due to treatment effects such as fatigue, decreased energy levels, nausea, and pain (Hwang et al., 2015; Lyons et al., 2018). Another IADL that drastically changes for survivors following cancer treatment is home establishment and management. In a cross-sectional, descriptive survey study with 368 participants in Iran and Canada, researchers found that survivors reported limitations in home establishment and management (Shahidi et al., 2014). Survivors reported that constraints were present in their abilities to complete house chores such as laundry and cleaning following treatment due to muscle weakness, fatigue, and sensory loss (Shahidi et al., 2014). Not only have performance deficits in ADLs and IADLs been found in cancer survivors due to the side effects of treatment, but researchers discovered that the occupation of rest and sleep also suffers. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 12 of 61 Individuals reported rest and sleep activities restore engagement in other occupations (American Occupational Therapy Association, 2014). Researchers found that survivors' side effects hinder sleep participation during or after cancer treatment. Engstrom et al. (1999) used a qualitative, multi-institutional sleep study to explore the impact, type, frequency, and severity of sleep disturbances among 150 cancer survivors. Participants completed interviews and phone surveys using an 82-item sleep questionnaire to obtain data regarding cancer survivors' sleep participation following cancer treatment. Survivors reported that sleep participation was disturbed by side effects such as insomnia, sleeping at unusual times, having trouble with dreams or nightmares, and psychological distress following cancer treatment (Engstrom et al., 1999). Carpenter et al. (2004) further explored sleep participation limitations among cancer survivors in a cross-sectional, descriptive, comparative pilot study using questionnaires and monitoring sessions to compare differences in sleep quality and disturbance between cancer survivors and healthy women who have hot flashes. Researchers discovered that cancer survivors experience poor sleep quality and high levels of sleep disturbance (Carpenter et al., 2004). As sleep participation limitations can lead to symptoms such as fatigue, poor cognition, and depression, which can impact other areas of occupation, it is essential to consider how sleep participation can be affected by the side effects of cancer treatment (Durmer & Dinges, 2005). The occupation of work includes labor, construction, organizing and planning services or processes, and committed occupations which may consist of financial reward (American Occupational Therapy Association, 2014). Many cancer survivors reported that the side effects of cancer treatment negate job performance. Groeneveld de Boer and Frings-Dresen (2013) used interviews in a qualitative, phenomenological study to evaluate how cancer treatment had impacted 10 participants work participation. Researchers explored survivors experiences with Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 13 of 61 returning to work and work performance, a physical exercise intervention, and the link between physical exercise and work. Survivors reported that their job performance and work productivity had declined following treatment due to side effects such as fatigue, feeling sick, cognitive deficits, impairments in concentration, memory deficits, and increased stress levels. Survivors also explained that absenteeism increased following treatment due to feeling ill, overly tired, or unmotivated to go to work (Groeneveld et al., 2013). Fangel and colleagues (2013) further explored cancer survivorship's influence on job performance in a descriptive, exploratory, crosssectional, and qualitative study using Katz's index and Lawton's index to assess functional capability and its correlation with the quality of life among 42 cancer survivors. Participants reported difficulties with work performance due to decreased independence, limited functional capability, and the presence of psychosocial issues following cancer treatment (Fangel et al., 2013). Leisure participation is another area of occupation hindered by the presence of cancer treatment side effects. Experts define leisure activity as an activity that is not an obligation but is intrinsically motivated and completed during a discretionary time (American Occupational Therapy Association, 2014). Keesing et al. (2018) conducted a mixed-methods Delphi study to explore the possible role of occupational therapists in the care of female cancer survivors. The researchers found survivors faced many challenges engaging in and resuming meaningful leisure occupations following treatment because of functional, emotional, and psychosocial side effects. Further, researchers supported the idea that occupational therapists could play a significant role in helping survivors address these occupational performance limitations. Occupational performance limitations related to leisure participation can also occur among survivors due to arm morbidities, such as pain, limited range of motion, and lymphedema of the arm following Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 14 of 61 cancer treatment. These side effects are especially common among breast cancer survivors (Thomas-Maclean et al., 2008). In a longitudinal, qualitative cohort study conducted by Thomas et al. (2015), 40 cancer survivors reported in interviews that side effects including arm morbidity, physical discomfort, and psychological distress reduced their abilities to engage in leisure activities. Researchers have identified specific forms of leisure participation limitations in the literature that involve difficulties engaging in travel and active leisure participation (Thomas et al., 2015). The final occupation that cancer survivors have reported experiencing deficits in following cancer treatment is social participation. Social participation involves activities supporting social engagement and interdependence with community members, family, peers, and friends (American Occupational Therapy Association, 2014). Johnson et al. (2017) conducted a quality improvement study focusing on multidisciplinary management of distress that survivors face. Researchers also explored survivors satisfaction with the distress management they received. Data was collected from electronic health records using a convenience sample of 65 gynecologic cancer survivors. Using the National Comprehensive Cancer Network Distress Thermometer and Patient Related Outcome Measures Information Systems QOL, researchers found that survivors experienced great psychosocial distress following treatment that hindered their social participation. Side effects of treatment that negatively influenced survivors social support were anxiety, depression, emotional distress, and feelings of psychological isolation (Johnson et al., 2017). Not only does psychosocial distress negatively influence cancer survivors social activities and social function, but survivors have also reported that physical functioning has impacted their social participation. In a cohort study completed by Syrjala et al. (2010), researchers used the Social Activity Log (SAL) to explore the social activities of 100 cancer Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 15 of 61 survivors following hematopoietic stem cell transplantation. Researchers found that survivors face many physical challenges such as fatigue, incontinence, and increased functional dependence due to muscle weakness following treatment that negatively impact one's desire to engage in social participation (Syrjala et al., 2010). Hair loss is another common physical side effect following treatment that many cancer survivors state has negatively influenced their desire to engage in social participation. Survivors report being embarrassed and upset by hair loss, limiting their willingness to participate in social activities with family, friends, and peers (Petruseviciene, 2018). These occupational performance deficits impact the quality of life of cancer survivors; therefore, it is essential to utilize screening tools to evaluate the need for rehabilitation services such as occupational therapy. Current Survivorship Screening Tools While none currently screen for the specific need for occupational therapy, screening tools are available that screen for side effects of cancer treatment and the need for rehabilitation services. In an observational study, Henneghan et al. (2018) implemented the Patient-Reported Outcomes Measurement Information System (PROMIS) Item Bank, perceived stress scale (PSS), UCLA Loneliness scale, Pittsburgh sleep quality index (PSQI), and the functional assessment of cancer therapy-cognitive function instrument (FACT-Cog) to measure anxiety, depression, fatigue, stress, loneliness, and sleep quality on perceived cognitive function. There were ninety female breast cancer survivors three years post-chemotherapy treatment that participated in the study. The researchers reported that breast cancer survivors who felt high stress levels, social isolation, and poor sleep quality might also have a lower perceived cognitive function (Henneghan et al., 2018). Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 16 of 61 Boronowski et al. (2012) conducted a research study to determine the interrater reliability, intrarater reliability, predictive validity, and concurrent validity of the Occupational Therapy Discharge Needs Screen (OTDNS). Professionals use this screening tool to identify clients with more complex discharge needs (Boronowski et al., 2012). The hospital dischargeplanning process for complex needs often includes a home assessment conducted by an occupational therapist before being discharged. Pre-discharge home visits lead to quicker discharge times and play a role in fall prevention post-discharge. The researchers conducted a prospective study in a convenience sample of 89 participants in a community hospital's rehabilitation and transitional care unit that were about to be discharged. Categories on the OTDNS include functioning, disability, and contextual factors. Functioning and disability include items related to medical condition, mobility, and activities of daily living. Contextual factors included items related to social support, physical/environmental barriers, and perceived readiness for discharge (Boronowski et al., 2012). Researchers found that the OTDNS can contribute to the efficiency of the discharge-planning process (Boronowski et al., 2012). Many individuals affected by stroke(s) often have physical, cognitive, psychosocial, or behavioral challenges (Jaber et al., 2018). Identifying self-perceived challenges to daily participation helps occupational therapists create client-centered goals and support long-term community engagement after stroke. According to Jaber et al. (2018), strokes impact several different areas of occupation including activities of daily living, instrumental activities of daily living, work, leisure, and social participation. Researchers recruited 25 participants receiving occupational therapy services from the American Stroke Foundation and had met the inclusion criteria. Researchers implemented a demographic questionnaire, the Canadian Occupational Performance Measure (COPM), and the Montreal Cognitive Assessment (MOCA). Researchers Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 17 of 61 used the COPM to identify patients' self-perception of performance in everyday living, and the MOCA was used to identify mild cognitive impairments. Patients reported IADLs, leisure participation, and ADLs as the top three challenges on the COPM. Survivors frequently report that driving and community mobility are challenging IADLs. They also noted that employment seeking and functional mobility are challenging. The participants self-efficacy indicated that they were not yet satisfied with their occupational performance. (Jaber et al., 2018). Not only is there a lack of an occupational therapy screening tool available in survivorship care, but there are other gaps in survivorship care that impact the overall quality of life for survivors. Gaps in Survivorship Care Some gaps in survivorship care include lack of education of the healthcare provider, survivors' lack of knowledge about the SCP, lack of communication between the survivor and the healthcare provider, and poor care coordination. The gaps in care can lead to the needs of survivors being left unmet. First, healthcare providers lack education, which can make them feel unconfident in treating survivors' late side effects or managing their symptoms. Many providers do not understand what late side effects are and how survivors still experience deficits even after remission. Researchers identified these issues with both PCPs and nurses. Barton (2014) investigated oncologists and PCPs infrequently providing SCPs. Researchers used data from the Survey of Physician Attitudes Regarding the Care of Cancer Survivors, a 2009 national poll of 1,020 PCPs and 1,130 oncologists. The researchers looked at post-treatment follow-up care for patients surviving breast or colon cancer. Researchers used four outcome variables: how often oncologists supply survivors with a written SCP, how much oncologists discuss the SCP with patients and who will be providing care for them, PCPs discussion of recommendations, and how often oncologists supply the written SCP and discuss the plan with patients. The researchers Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 18 of 61 found that PCPs with less training in survivorship care were 43% less likely to have discussions with survivors. Only 12% of PCPs reported having full conversations of survivorship care with their patients. The author suggested a low percentage of PCPs having full discussions because of the lack of physician training and care coordination (Barton, 2014). Similarly, in 2014, Lester et al. studied nurses' knowledge of cancer survivorship care through a descriptive, cross-sectional study in a Midwestern comprehensive cancer center. This study included 223 registered and advanced practice nurses and used an online survey with 50 questions created from the Institute of Medicine report and related publications (Lester et al., 2014). The researchers found that less than 50% of the nurses felt knowledgeable about the impact cancer could have on survivors and their families, how to prevent certain conditions after cancer treatment, and the side effects survivors may face (Lester et al., 2014). The authors concluded that there are definite gaps in knowledge regarding cancer survivorship care with nurses (Lester et al., 2014). Cheung et al. (2013) conducted a quantitative cross-section study that surveyed PCPs and oncologists in 2013. The researchers looked at PCP and oncologists views on self-efficacy regarding the follow-up care of cancer survivors, such as their ability to detect recurrence and manage the effects of cancer and various treatments (Cheung et al., 2013). They designed survey questions to assess both the PCP and oncologists' views, knowledge, and care coordination methods regarding post-treatment care in cancer survivors (Cheung et al., 2013). The researchers also listed questions regarding PCPs' attitudes and preferences. In this study, participants identified their preferred survivorship care model regarding who has the most responsibility in the care plan. Their options in the final survey about who they preferred for the responsibility of care included PCPs having the primary responsibility, PCPs sharing the responsibility with other Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 19 of 61 cancer specialists, or oncologists having the primary responsibility. Researchers utilized the initial survey to determine which participants were eligible through a telephone screening process and followed up with a survey in the mail for the eligible participants. In this study, there were 2,026 total participants. Out of these participants, 938 were PCPs, and the other 1,088 were oncologists. The study found that 51% of PCPs supported a PCP/shared model of care, 59% of cancer specialists preferred an oncologists model of care, and 23% of physicians favored the specialized clinic models (Cheung et al., 2013). The study also found 70% of oncologists were confident in their ability to manage long-term effects in cancer survivors, while only 19% of PCPs felt confident in their ability to provide adequate care (Cheung et al., 2013). Overall, the authors concluded that PCPs and oncologists have different model preferences for cancer survivorship care. These preferences can affect communication and role delineation, affecting the survivors' care (Cheung et al., 2013). Another issue with the current SCP is that survivors do not have knowledge of what a SCP is, and they do not know how to understand the plan if they do have one. Casillas and colleagues (2011) explored how confident young adult cancer survivors are in managing their care. Researchers recruited 376 participants from the LIVESTRONG Survivorship Center of Excellence Network sites aged 18-39 years old. This self-report survey study looked at 57 items in six domains. The six domains included sociodemographic information, cancer diagnosis and treatment, experiences with doctors, survivors' knowledge of late side effects, current health status, and opinions regarding the availability of resources for survivors. Researchers found that one-third of participants did not have copies of their medical records, 48% did not have a written treatment summary, and 55% did not have a written survivorship care plan (Casillas et al., 2011). The researchers found that patients lack the knowledge they need when it comes to their medical Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 20 of 61 records and SCPs, which leads to them not being able to get the care they need. The authors of this study concluded that if survivors receive the SCPs, they will better manage their care and understand their past medical history. If provided with a SCP, survivors would likely better understand their past medical history and have more information on late side effects that they may experience, which could lead to improved communication with their healthcare providers. The final issue is the lack of communication between the healthcare provider and the survivor. Benci et al. (2018) conducted research to identify cancer survivors' barriers when sharing their SCP with their healthcare provider. The researchers in this quantitative study used data from 3231 cancer survivors who used the OncoLink SCP resource between the years 20092016. Researchers found that 87% of users rated their satisfaction with their SCP good or better; however, only 70% of survivors planned to share their SCP with their health care provider (HCP) due to the feeling that they would not care (Benci et al., 2018). The researchers found that some survivors are not communicating their SCP and their needs with their HCP because they feel that their needs will be ignored. The researchers in this study concluded that the primary goals of the SCP are to facilitate the transmission of information from the oncologist to survivor to the longterm care team and serve as a communication bridge between survivors and providers. However, there is an alarming disconnect with survivors feeling comfortable sharing their SCP with their healthcare provider (Benci et al., 2018). The lack of role delineation for treating the long-term effects of cancer in the cancer survivorship stage is another detriment that substantially impacts overall cancer care (Cheung et al., 2013). Some believe ongoing cancer survivorship care falls under the role of oncologists, who specialize in cancer, while others think primary care physicians (PCPs) should monitor this care (Greenfield et al., 2009). There are currently no guidelines stating what health care Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 21 of 61 professionals are in charge of cancer survivors; therefore, there are disparities because people do not have adequate follow-up care. Some oncologists feel monitoring and treating long-term effects resulting from cancer treatments is their role, while others believe they do not have time for this portion of cancer care and think it should be in the hands of primary care physicians (Klabunde et al., 2013). Similarly, some PCPs feel they should oversee follow-up cancer survivorship care, whereas others do not feel comfortable treating the adverse effects of cancer (Cheung et al., 2013). Cheung et al. (2013) conducted a quantitative cross-section study that surveyed primary care physicians (PCPs) and oncologists' views on self-efficacy regarding the follow-up care of cancer survivors. In this study, researchers also examined what cancer survivorship model PCPs and oncologists preferred to develop new strategies for follow-up cancer care. They designed survey questions to assess both the PCP and oncologists' views, knowledge, and care coordination methods regarding post-treatment care in cancer survivors (Cheung et al., 2013). The three possible survivorship model preferences were a shared model involving PCPs and oncologists together, care only by oncologists, or specialized survivor clinics that include physicians that exclusively focus on cancer care with skilled nurses, physician assistants, and nurse practitioners. Researchers examined participants' attitudes regarding their views on personal self-efficacy related to detecting cancer recurrence and the ability to manage cancer and its effects. The initial survey determined eligible participants through a telephone screening process, followed by a mailed version of the formal survey packet to eligible participants. In total, 2,026 participants consisted of 938 PCPs and 1,088 oncologists. The study found that 51% of PCPs supported a PCP/shared model of care, 59% of cancer specialists preferred an oncologist lead model of care, and 23% of physicians favored the specialized survivor clinic models Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 22 of 61 (Cheung et al., 2013). Researchers found that 70% of oncologists were confident in their ability to manage long-term effects in cancer survivors. However, PCPs were less optimistic in their ability to provide adequate care, with only 19% reporting high self-efficacy (Cheung et al., 2013). Researchers concluded that the discrepancy in preference of PCP or oncological care in treating cancer survivors might fail to coordinate care between providers adequately. A 2016 qualitative study, conducted by Smidt et al. (2016), focused on the perceptions of Australian oncologists in terms of cancer-related cognitive changes (CRCC) in patients and the impact of their views on patient care. The main questions researchers addressed in this study include how oncologists perceive CRCC and address these issues with their patients during the survivorship phase (Smidt et al., 2016). After receiving verbal consent, the researchers used telephone interviews, where interviews were audio-recorded and then transcribed verbatim. The interviews ranged from 15 to 30-minute intervals on average and consisted of 18 oncologists. The critical points asked in the interview were: (1) the beliefs about the impact of cognitive function among cancer survivors, (2) perceptions of which party is more likely to address cognitive changes, (3) uncertainty of how to manage CRCC, and (4) the role of oncologists in CRCC (Smidt et al., 2016). The researchers discovered that the participating oncologists treat cancer survivors that have side effects of cancer treatment. However, the patients indicated that they were given little information from their oncologists regarding CRCC. Researchers showed a minimal number of oncologists in this study referred patients to other healthcare professionals, including nurses, occupational therapists, and social workers (Smidt et al., 2016). They concluded that the lack of guidelines for cancer survivor treatment, and the number of survivors not experiencing the CRCC, has created a barrier in practice that has prevented survivors from the best care possible. This study successfully highlighted the barriers Australian oncologists Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 23 of 61 face when delivering survivorship care, which can impact the patient's care and overall quality of life (Smidt et al., 2016). Similarly, Klabunde et al. (2013) also investigated PCPs and oncologists' self-reported roles in follow-up care of cancer patients. Their focus was to assess the roles of PCP's and oncologists in the follow-up cancer care process. Researchers also determined what factors are involved in follow-up care and how clinicians utilize care coordination and communication (Klabunde et al., 2013). The researchers in this cohort study used data from the 2009 Survey of Physicians' Attitudes Regarding the Care of Cancer Survivors (SPARCCS), which surveys both PCPs and oncologists. The researchers primarily focused on the follow-up care of breast and colon cancer survivors; therefore, they excluded physicians who reported to never, or not in the past year, care for patients with these forms of cancers (Klabunde et al., 2013). The final study sample included 1,014 PCPs and 1,125 oncologists. Researchers assessed the physician's roles by asking how often treatment services were provided in their practice and evaluated the participants' beliefs on the role of PCPs in cancer survivorship (Klabunde et al., 2013). They specifically asked PCPs how often they received a summary of the patient's cancer treatment or recommendations for future care from the treating oncologists. Researchers found that many PCPs reported co-managing survivor care with other oncologists unless screening for new primary cancers in patients. The PCPs that reported receiving summaries from the treating oncologists were also more likely to prefer the co-managing role pattern (Klabunde et al., 2013). These researchers found that many PCPs feel that they have an active role in cancer survivorship but often accompany co-management of oncologists. However, oncologists reported they directly provide follow-up care without assistance from the PCPs. The authors noted the discrepancies of reports in co-management care from PCPs and oncologists and believe this emphasizes the need Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 24 of 61 for a shared-care model when treating cancer survivors to meet the patient's needs (Klabunde et al., 2013). Finally, a mixed-method study, conducted by Suija et al. (2016) focused on the current role general practitioners play in caring for cancer patients and the unmet needs that cancer patients in primary care face. Researchers conducted a study at general practice locations in Estonia that included patients with various stages of cancer but excluded patients with terminal diagnoses (Suija et al., 2016). Researchers (2016) used the qualitative portion to understand the current phenomenon through interviews, where patients expressed their personal experiences. Ten interviews lasted from 35 to 120 minutes and were recorded, transcribed verbatim, and analyzed using thematic analysis. A questionnaire was later developed as a form of quantitative research to collect data based on previous findings. The questionnaire focused on demographics, illness, treatment methods, follow-up care, and statements related to their diagnosis and their medical professional's role (Suija et al., 2016). There were 300 questionnaires distributed to eligible participants throughout Estonia, and 113 participants responded. The researchers found that 92% of survivor participants were satisfied with the GP's work, 77% felt their GP was competent in cancer care, and 79.5% reported their oncologists thoroughly investigated them (Suija et al., 2016). The most common unmet need reported by patients was poor communication, where 19.5% had negative attitudes toward communication with their physicians, and 30% stated they could not understand the doctor's explanations. Finally, 39.9% of participants reported that they felt their oncologists and general practitioners did not collaborate in shared survivorship care (Suija et al., 2016). Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 25 of 61 Unmet Needs of Survivors Due to gaps in care and a lack of referral to rehabilitation services such as occupational therapy, survivors live with unmet needs. Thorsen et al. (2011) published a cross-sectional study where researchers focused on assessing the rehabilitation needs of cancer survivors and exploring factors that are associated with these needs. The other aims of the study were to estimate the need for complex rehabilitation and its associated factors, address unmet needs in rehabilitation services, and assess the factors related to these needs (Thorsen et al., 2011). The researchers used a questionnaire to determine the patient's need for certain rehabilitation services relating to their type of cancer and what patients had been offered and utilized the rehabilitation services. The final number of participants was 1,325, where 37% reported no need for therapy, and 63% needed at least one form of rehabilitation that was listed (Thorsen et al., 2011). The highest reported need was physical therapy at 43%, followed by the need for more than one form of therapy at 40% (Thorsen et al., 2011). The authors concluded that most patients reported the need for some form of rehabilitation service, and physical therapy was the most indicated need. They believe the results from the study help to enforce that cancer patients need rehabilitation services in each phase of treatment, and that rehabilitation is often only offered after initial treatment (Thorsen et al., 2011). They also concluded that the need for rehabilitation remains present for the first few years after diagnosis and often remains relatively constant for years after (Thorsen et al., 2011). Binkley et al. (2012) conducted a mixed-methods study that focused on the unmet needs of breast cancer patients. The researchers hypothesized that the frequency of unmet needs could result from the lack of awareness of the potential long-term effects of cancer treatments. Researchers used a prospective surveillance model to explore various articles that included issues Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 26 of 61 regarding lymphedema, fatigue, upper extremity dysfunction, neuropathy, etc. (Binkley et al., 2012). The data was collected through systematic reviews, focus groups, and questionnaires to obtain the primary data sources (Binkley et al., 2012). The qualitative results suggest that patients need long-term attention, specifically shoulder and trunk strength and range of motion. The researchers also found few women are referred for rehabilitation services while receiving or after the conclusion of treatment for breast cancer (Binkley et al., 2012). They concluded that patients need consistent care, such as rehabilitation services, to treat short- and long-term effects of breast cancer (Binkley et al., 2012). Jang and Jeong (2021) performed a cross-sectional descriptive study focusing on the unmet needs of cancer patients and their families following diagnosis. Researchers hypothesized that these unmet needs would lead to a decreased quality of life in the patients (Jang & Jeong, 2021). The researchers utilized a questionnaire to collect patients' demographics, disease-related characteristics, unmet needs, and quality of life. Both cancer patients and family members completed the questionnaire, with 115 patient-family dyads participating in the study (Jang & Jeong, 2021). Researchers found that the patients unmet needs decreased their physical function and overall quality of life. Researchers also found that the patients unmet needs led to decreased mental quality of life in patients families (Jang & Jeong, 2021). The authors concluded that intervention programs are necessary to improve cancer patients' and their families quality of life (Jang & Jeong, 2021). In summary, researchers have indicated the need for an occupational therapy screening tool in cancer survivorship care. Survivors experience many side effects of treatment, such as fatigue, pain, sensory loss, and cognitive impairment that may impact occupational performance and overall quality of life (Brekke et al., 2019). These side effects can result in deficits in areas Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 27 of 61 of occupation such as personal hygiene and grooming, toileting, sleep, work, and sexual activity (Hwang et al., 2015; Marciniak et al., 1996; Petruseviciene et al., 2018). Although survivors face performance deficits resulting from cancer treatment, many do not receive referrals to occupational therapy. Occupational therapy practitioners are skilled in addressing these late side effects and occupational performance deficits for improved overall quality of life in cancer survivors. However, Pergolotti et al. (2014) found that only 32% of their total sample received referrals to occupational therapy within the first two years of their cancer diagnosis. Survivorship care requires an occupational participation approach which includes regular screening for occupational therapy services. Currently, no developed screening tools are indicating the need for referral to occupational therapy in survivorship care. Researchers previously developed the SOCS-OTS to screen for occupational performance deficits and the need for occupational therapy services in cancer survivors. The purpose of this study is to identify the level of consensus on which items should be included in this tool using a Delphi technique. Researchers will explore which items on the SOCS-OTS reach 80% consensus for inclusion, which do not reach a level of 80% consensus for exclusion, and additional items to include in the tool. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 28 of 61 Building the Screen of Cancer Survivorship - Occupational Therapy Services (SOCSOTS): A Delphi Study Abstract Background: Occupational therapy is needed in cancer survivorship care to bridge the gaps in care and treat the unaddressed life activities experienced by this population. The Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) tool is available but requires a true consensus from experts in the field to indicate which items to include in its final rendition. The researchers in this study aim to identify the level of consensus on which items should be included in the final rendition of the SOCS-OTS tool. The purpose of the tool is to survey cancer survivors to assess their need for occupational therapy. Introduction: This paper reviews the lack of occupational therapy services provided to cancer survivors post-treatment. The researchers of this study set out to create a screening tool that depicted the need for therapeutic interventions for these individuals. The Model of OccupationalParticipation for Cancer Survivorship (MOPCS) helped guide the development of this study and the screening tool. Methods: Researchers used a classical Delphi methodology to assess 14 expert opinions and indicate which items meet consensus for inclusion on the SOCS-OT tool through an online survey development software program. Researchers used thematic analysis and open, axial, and selective coding to interpret experts' comments and feedback and guide appropriate modifications to the survey before sending it out for subsequent rounds. Researchers removed items not reaching 80% consensus from the tool. In each round, participants received an overview of participants feedback from the previous round. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 29 of 61 Results: At the conclusion of the Delphi methodology process, 20 items met consensus for the final rendition of the SOCS-OT tool. Researchers modified several items throughout the process and removed three items from the tool. Conclusions: With the given information, the need for occupational therapy services in oncology is prevalent and requires additional research and assessment tools. The development of the SOCS-OTS provides a rise for further investigation. Recommendations/Implications: It is imperative that individuals in the field of oncology adopt and implement the SOCS-OTS into standard cancer survivor treatment. Researchers will utilize validity and reliability tests to confirm the tool's psychometric properties. Keywords: Cancer survivorship, Occupational Therapy, Screening Tool, Delphi Method Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 30 of 61 Introduction As of 2016, experts estimated that there were 15.5 million cancer survivors in the United States, and they predicted that by the year 2026, that number will rise to 20.3 million (National Cancer Institute, 2018). A cancer survivor is anyone with or who had cancer from the time of diagnosis to the end of life (National Cancer Institute, 2019). As the number of cancer survivors increases, it is essential to consider what factors may impact their quality of life following cancer treatment. Quality of life is inversely related to occupational performance deficits, which can occur due to side effects of cancer treatment such as fatigue, pain, sensory loss, and cognitive impairments (Brekke et al., 2019). Occupational performance is the accomplishment of an occupation which is a purposeful activity that has meaning to the individual (American Occupational Therapy Association, 2014). In 2006, the Institute of Medicine (IOM) called for the implementation of cancer survivorship recommendations and plans to improve care coordination and follow-up care and assure patient outcomes. The American Society of Clinical Oncology (ASCO) Survivorship Care Plan (SCP) is a document that includes a treatment summary and follow-up care plan to improve communication and coordination of care for cancer survivors. It helps patients track check-ups or follow-up tests, maps out possible late side effects of treatment, and provides ideas for staying healthy (Centers for Disease Control and Prevention, 2018). Researchers have indicated that a lack of coordination in survivorship care can contribute to poor care delivery and adverse patient outcomes (Klabunde et al., 2013). The ASCO SCP addresses concerns related to emotional and mental health, physical functioning, memory or concentration loss, fatigue, parenting, school/work, and sexual functioning. However, the SCP in care coordination does not include various kinds of life Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 31 of 61 activities (occupations) found which impact cancer survivorship in the literature (American Society of Clinical Oncology, 2019). Researchers have recommended an occupational participation approach to cancer survivorship care to address gaps in care (Yim Loh & Jonsson, 2016). Although survivors face performance deficits resulting from cancer treatment, many do not receive referrals to occupational therapy. An occupational participation approach is necessary in survivorship care, including regular screening for occupational therapy services. Currently, no developed screening tools indicate the need for referral to occupational therapy in survivorship care. However, a previously developed Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) tool is available but requires a true consensus from experts in the field to indicate which items are necessary in its final rendition. The researchers in the study aim to identify the level of consensus on which items should be included in the SOCS-OTS tool. Method Study Design Researchers used a classical Delphi methodology to assess expert opinion on a screening tool to indicate which items meet consensus for inclusion on the tool. The classical Delphi methodology is a consensus technique used to obtain and evaluate the views of an expert panel who have extensive knowledge and experience in oncology care (Sekayi & Kennedy, 2017). We used an expert panel for the ability to have multiple skillful opinions of how to adapt our screening tool to best address the concerns and problems of the cancer survivorship population. It also allows for knowledge sharing between the panelist and researchers. Lastly, it alters any researchers bias that may occur throughout the developmental process (Avella, 2016). Our study consisted of four rounds in which experts gave their opinions on whether to include an item in Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 32 of 61 our screening tool or not. Our study included a set of open-ended questions allowing for freedom of response. Sekayi and Kennedy (2017) indicated that a classical Delphi methodology is often used in health and social science research when developing a screening tool due to the ability to converge opinions from a wide variety of experts and reach consensus. Further, the Delphi methodology was appropriate for this study as it allowed researchers to use several rounds of feedback for revision and improvement of the screening tool after each consecutive round (Hasson et al., 2000). Delphi study methodology is used in occupational and physical therapy practice to provide the foundational psychometric testing needed to validate a survey tool in areas where evidence and research are lacking, such as oncology care (Falzarano & Pinto Zipp, 2013). Previous to this project, a group performed the first round of this Delphi study, including a deductive and inductive approach to item writing and included a set of open-ended questions allowing for freedom of response. The deductive approach was conducted by thematically analyzing oncology literature and using the Occupational Therapy Practice Framework to guide item writing specific to occupational performance limitations in survivorship. Researchers used an inductive approach to verify the items that were issues relevant to cancer survivor panelists. Participants While researchers that have used Delphi methodology have not clearly defined an expert, experts may include informed individuals, specialists in the field, or someone who knows about a specific subject (Keeney et al., 2001). An expert can also include an individual who has worked within an area for a certain length of time (Hardy et al., 2004; Jeffery et al., 2009). Qualified expert panelists included occupational therapists (OT), certified occupational therapy assistants (COTA), and OT researchers who practice and study in oncology. The inclusion of OT Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 33 of 61 practitioners required expert panelists to have at least five years of clinical experience with a 30% caseload of adult cancer survivors. OT researchers required a published oncology-related article. Exclusion from this study involved OT practitioners serving the pediatric oncology population because the SOCS-OTS is for the adult population. Purposive and snowball sampling recruitment methods occurred through our professional networks, posting on forums on AOTA.org, and social media platforms. Instrument Under the leadership of the principal investigator, a previous group of students developed an electronic questionnaire, The Screening of Cancer Survivorship-Occupational Therapy Services (SOCS-OTS), to indicate the need for occupational therapy services in survivorship care. The questions ask about everyday activities of daily living performed by cancer survivors, e.g., My cancer has made it difficult to engage in sexual activity with a partner or myself. Survivors indicated their level of agreement with each question on the tool on a five-point scale: I cannot do this, I have a lot of problems with doing this, I have some problems doing this, I can do this well, I can do this very well. A five-point Likert scale is the most commonly utilized Likert scale in empirical research. Researchers indicate that a 5-point Likert scale produces greater validity, reliability, and variance in response than scales with fewer items (Dawes, 2012). The current tool requires a true consensus from experts in the field to indicate item inclusion in its final rendition, which researchers will gather in this study. See Appendix A for an original questionnaire of SOCS-OTS. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 34 of 61 Data Collection Round 2 The second round of the overall classical Delphi study for this project consisted of a survey containing quantitative and qualitative methods that researchers developed from cancer survivors in Round 1. Researchers sent an ordinal questionnaire to participants in Round 2. Expert panelists indicated whether or not to include each item on the tool through a yes, yes with revisions, or remove ordinal questionnaire and provided qualitative feedback on improvements for each item. An overall additional qualitative question at the end of the survey asked experts to indicate missing items they felt should be included on the tool. Additionally, expert panelists provided feedback about the scale used in the SOCS-OTS and any additional general feedback. Round 2 concluded after 24 days, with follow-up emails sent to expert panelists on day 7, day 12, and day 14. Due to the limited number of responses, our initial response time frame was changed from 14 days to 24 days to gain more participants. Round 3 In Round 3, researchers sent out another ordinal questionnaire to panelists to determine which items were essential to include on the SOCS-OTS. The expert panelists rated each item on a 5-point Likert scale of importance, rating 1 (Unimportant) to 5 (Very Important). Additionally, panelists provided feedback on the updated format of the tool itself and any additional general feedback about items. Round 3 concluded after 18 days, with follow-up emails sent out to expert panelists on day 7, day 12, day 14, and day 17. Due to the limited number of responses, our initial response time frame was changed from 14 days to 18 days to gain more participants. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 35 of 61 Round 4 In the fourth and final round, researchers sent the revised questionnaire to expert panelists following further adjustment to the tool using expert feedback from Round 3. The final questionnaire consisted of items that met consensus after Round 3. Panelists indicated whether the item must be included or removed from the tool. Round 4 concluded after 35 days. Researchers sent follow-up emails to the panelists after 7 days, 9 days, 11 days, 12 days, 13 days, 24 days, and 29 days. Researchers intended to close Round 4 after 14 days, but due to limited participation was extended to 35 days. Round 4 received 14 responses, and the researchers verified the final version of the SOCS-OTS. On the final version, 20 items remained after researchers removed 2 items due to unmet consensus. Data Analysis Panelists responses were collected and analyzed using Qualtrics (Qualtrics, Provo, UT), which is an online survey development software. Researchers collected these responses after each round to obtain quantitative data. Although there is no set consensus value when using the Classical Delphi technique, many studies use 80% consensus, which was the consensus chosen for this study (Keeney et al., 2006). To be in consideration for the next rendition of the screening tool, items needed to reach the minimum consensus. Researchers used thematic analysis and open, axial, and selective coding to interpret experts' comments and feedback and guide appropriate modifications to the survey before sending it out for subsequent rounds. Researchers analyzed data through all three rounds regardless of the attrition of expert panelists. After the Delphi process, researchers sent the final results to the participating panelists through Qualtrics. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 36 of 61 Results Round 2 In Round 2 of our Delphi study, researchers sent the survey to 75 panelists through Qualtrics and gathered 27 responses. Nine panelists did not meet expert criteria, so researchers only included 18 responses in data collection. See Appendix A for Round 2 screening tool sent for expert feedback. After analysis of feedback provided by participants, researchers made changes to the items on the SOCS-OTS for clarity based on themes generated. Five items did not meet consensus and were modified using expert feedback. Items that did not meet consensus included Engage in sexual activity with a partner or myself, Maintain closeness and intimacy with a romantic partner, Move from one position or place to another, Do my yard work, and Fully return to work. Six items including Drive and move around the community, Manage my health, Toilet and toilet hygiene, Engage in religious/spiritual activities, organizations, and/or practices, Dress/undress, and Personal hygiene and grooming were added to the screen using expert recommendations. See Table 1 for Round 2 consensus levels. Per expert panelist feedback on the scaling technique, researchers changed the tool to a check all that apply format. Instead of having clients rate their difficulty level, this new format allows clients to indicate which items they find difficult and would like assistance completing. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 37 of 61 Table 1 Consensus Levels for Round 2 Items Consensus Bathe and/or shower Engaging in sexual activity with a partner or myself Maintain closeness and intimacy with a romantic partner Provide care for other people and/ or pets Move from one position or place to another Manage finances Maintain my exercise routine and physical fitness 100% 64.70%* 70.59%* 88.89% 61.11%* 100% 83.33% Manage my medications 94.44% Clean my home 83.33% Do my yard work 77.78%* Perform home maintenance and repairs 83.33% Plan, prepare, serve and/or clean up meals 83.33% Grocery shop 83.33% Rest and sleep 94.44% Fully return to work 72.22%* Perform my job duties at prior level of expectation 88.89% Engage in educational activities 88.89% Participate in leisure activities 94.44% Socialize with my family and friends 100% Participate in community events 100% Note. * indicates items that did not meet consensus. Round 3 In Round 3, researchers collected 15 total responses. Based on the feedback received, two items did not meet consensus, including Doing my yard work and Performing home maintenance and repairs. Researchers removed these two items from the SOCS-OTS entirely and sent out an updated revision in round 4. See Table 2 for Round 3 consensus levels. Researchers modified a few of the items with added clarification, where the experts expressed Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 38 of 61 appreciation for the use of the updated vocabulary. In regards to the check all that apply format, the experts provided positive feedback, expressing that the new set-up is relevant and easier for the readers comprehension. Table 2 Consensus Levels for Round 3 Items Consensus Bathe and/or shower 100% Manage finances 93.33% Clean my home 86.67% Do my yard work 66.67%* Perform home maintenance and repairs 53%* Plan, prepare, serve and/or clean up meals 93.33% Rest and sleep 100% Engage in educational activities 80% Participate in leisure activities 100% Socialize with my family and friends 100% Participate in community events 86.67% Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) 100% Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) 93.33% Provide care for others (e.g., childcare, caring for older parents, etc.) 93.33% Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) 100% Maintain my desired exercise routine and physical fitness 93.33% Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) 93.33% Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) 86.67% Engage in desired work performance and/or returning to work 93.33% Drive and move around the community (e.g., using public or private transportation) 93% Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 39 of 61 Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) 93.33% Toilet and toilet hygiene 100% Engage in religious/spiritual activities, organizations, and/or practices 86.67% Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) 93.33% Personal hygiene and grooming 93.33% Note. * indicates items that did not meet consensus. Round 4 In Round 4 of our Delphi Study, we collected 14 survey responses from expert panelists. Three items did not meet consensus, which included Engage in leisure activities, Participate in community events, and Engage in religious/spiritual activities, organizations, and/or practices. See Table 3 for Round 4 consensus levels. Researchers removed these three items from the SOCS-OTS entirely. Researchers did not modify any items following the conclusion of this round as the remainder of the items reached consensus. Experts expressed general positive feedback about the SOCS-OTS and that it will be a valuable tool to identify the need for OT services. See Appendix D for the final version of SOCS-OTS. Table 3 Consensus Levels for Round 4 Items Consensus Bathe and/or shower 100% Manage finances 100% Clean my home 85.71% Plan, prepare, serve and/or clean up meals 100% Rest and sleep 100% Engage in educational activities 57.14%* Participate in leisure activities 100% Socialize with my family and friends 100% Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 40 of 61 Participate in community events 57.14%* Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) 100% Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) 100% Provide care for others (e.g., childcare, caring for older parents, etc.) 92.86% Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) 85.71% Maintain my desired exercise routine and physical fitness 92.86% Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) 100% 85.71% Engage in desired work performance and/or returning to work 100% Drive and move around the community (e.g., using public or private transportation) 100% Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene 92.86% 100% Engage in religious/spiritual activities, organizations, and/or practices Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming Note. * indicates items that did not meet consensus. 78.57%* 100% 100% Discussion In this modified Delphi study, researchers aimed to identify the level of consensus on which items should appear on the final SOCS-OTS tool. There are currently no developed screening tools used in practice to indicate the need for referral to occupational therapy in survivorship care, despite evidence that occupational performance limitations occur from side effects of cancer treatment. Pergolotti et al. (2020) found in ovarian cancer survivors, functional limitations lead to physical, social, and emotional problems, which occupational therapy can Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 41 of 61 address. Survivors reported deficits in areas of daily living, work, and physical activity, which correlate with decreased quality of life (Pergolotti et al., 2020). Martin et al. (2020) further explored the impact of survivorship on occupational performance. They identified six limited domains of occupation: social activity, physical activity, sexual activity, employment and role functioning, physical functioning, and self-care. Side effects of cancer treatment, including urinary dysfunction, fatigue, anxiety, weakness, and pain, impact these occupational domains (Martin et al., 2020). Per Martin et al. (2020), these limitations can result in depression, anxiety, and reduced quality of life among survivors. Thus, the side effects of cancer treatment can have detrimental implications on occupational performance. According to Hwang et al. (2015), among 30 of the 68 participants (45.5%) who received referrals, 13 participants (19.7%) reported having a physical therapy referral for survivorship care, yet only 3 (4.5%) received occupational therapy. Similarly, Pergolotti et al. (2014) conducted a population-based survey finding that of the 87% of older cancer survivors in need of occupational therapy, only 32% saw occupational therapy within the first two years of their cancer diagnosis, further reinforcing the underutilization of occupational therapy in cancer survivorship. While survivors continue to experience occupational performance deficits following cancer treatment and occupational therapy services are being underutilized, there is also a lack of referral to occupational therapy services (Martin et al., 2020). The ASCO SCP does not include various kinds of life activities (occupations) inhibited in cancer survivorship and would indicate a referral to needed occupational therapy services (American Society of Clinical Oncology, 2019). Doucet and Gutman (2013) called for the need for occupational therapy researchers to design measurement tools that provide quantifiable data on function in areas including body Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 42 of 61 impairment, activity limitation, and participation restriction. Using this quantifiable data, practitioners could indicate the need for occupational therapy services, justify their role in the healthcare system, and improve the quality of life among clients with functional impairments (Doucet & Gutman, 2013). Researchers in the current study gathered consensus from experts in oncology to determine item inclusion on the SOCS-OTS final rendition. The items on the SOCS-OTS include everyday activities of daily living that are frequently stated as participation restrictions by cancer survivors, e.g., My cancer has made it difficult to engage in sexual activity with a partner or myself. According to the American Occupational Therapy Association (2014), cancer treatment can negatively impact every aspect of the occupation. The most highly rated items on the final SOCS-OTS addressed the following areas of occupation: bathing and dressing, managing finances, feeding/eating, rest and sleep, social participation, sexual activity and intimacy, medication management, work, and community mobility. Literature shows that cancer survivors experience limitations in social participation, leading to decreased quality of life (Martin et al., 2020). Chemotherapy and other cancer treatments can lead to a decline in strength, fatigue, depression, and pain which influences the ability to return to work (Martin et al., 2020). Occupational therapy can positively impact these factors related to their ability to return to work (Wallis et al., 2020). Hwang et al. (2015) stated that cancer survivors often report experiencing decreased sexual drive, poor body image, and sexual discomfort, which limit their ability to participate in sexual activity. Survivors listed hygiene as one of the most important occupational performance deficits experienced by cancer survivors in a study conducted by Marciniak et al. (1996). Hwang et al. (2015) identified the occupational performance limitations cancer survivors face leading to a decreased quality of life. Items of Engage in education activities," "Participate Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 43 of 61 in community events," and "Engage in spiritual/religious activities, organizations, and/or practices" did not meet consensus. There was limited research to support these items, which may have impacted the experts recommendations to remove these items from the tool. Limitations and Future Research It is important to recognize the limitations of this study. First, we faced attrition in this study with 27 initial panelists in round 2; therefore, we had a small sample size of expert panelists that diminished to 14 by round 4. Literature on Delphi methodology states that 30 panelists are ideal (Hasson et al., 2000; Powell, 2003). In accordance with previous Delphi studies, researchers expected an attrition rate of 20% for a Delphi study of 3 rounds (Henderson & Rubin, 2012). Some possible issues related to this more significant attrition rate were that active data collection happened around a holiday break and during a global pandemic. The first round of the Delphi study included a majority of participants who were breast cancer survivors. Therefore, this may be problematic when considering the development of the screening tool as certain forms of cancer can have different effects on various occupations. Future research supporting the SOCS-OTS should focus on developing its psychometric properties, such as a formal validation of its scale and exploring how many responses indicate the need for an OT referral. Additionally, reliability studies are warranted involving a variety of cancer diagnoses. Future researchers should also explore distress screeners or current survivorship care plans to screen for side effects of cancer and identify which items on these screening tools would trigger the need to use the SOCS-OTS for possible OT referral. Implications for Occupational Therapy Practice To address the broad spectrum of occupational performance issues related to survivorship care, health care providers must recognize what clients require an occupational therapy referral at Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 44 of 61 various points in the survivorship continuum. Occupational therapy practitioners can take action with improving screening services for cancer survivors in the following ways: Educate referral sources on the distinct value of OT in oncology care. OT has distinct value in oncology care because of the skill set. Occupational therapists work with survivors on their physical and psychosocial needs to improve various occupational performance deficits they face due to cancer treatment. While many healthcare providers focus on the side effects survivors face, OTs focus on how those side effects affect their everyday function and performance in daily tasks (Sleight & Duker, 2016). Discuss with oncology teams the importance of screening for occupational performance deficits using screening tools like SOCS-OTS. Introduce SOCS-OTS to frontline practitioners in oncology care, including nurse navigators, oncologists, and other members of multidisciplinary oncology teams. Adopt and incorporate the SOCS-OTS into screening procedures and care coordination, including its potential implementation into distress screening tools and survivorship care plans. Conclusion There is currently no developed screening tool indicating occupational performance deficits and the need for referral to occupational therapy in the cancer survivor population. This gap in screening services led to the development and need for formal validation of the SOCSOTS. Items included in the final version of the SOCS-OTS tool, following expert consensus, addressed the degree of difficulty clients have performing occupations following cancer treatment. They specifically addressed activities of daily living and instrumental activities of daily living. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 45 of 61 In the first round of the Delphi study, researchers used the opinion of cancer survivors for validation of screening tool items they developed from a thorough literature review. In the second round (and current study), researchers used expert panelists, including occupational therapists (OT), occupational therapy assistants (OTA), and OT researchers that practice and contribute to the research in the field of occupational therapy in oncology. In health science research, researchers commonly select a Delphi approach to eliminate biases, allow opinions from a variety of experts, and have the opportunity for revision and feedback following each round of the Delphi until they reach consensus (Avella, 2016; Hasson et al., 2000; Sekayi & Kennedy, 2017). Practitioners in oncology care can use the SOCS-OTS tool to identify activities that the client cannot perform to their satisfaction. Further work may be needed to refine and test the tool in a clinical setting to ensure its feasibility and effectiveness in client-centered care. Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 46 of 61 References American Occupational Therapy Association. (2014). 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Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 57 of 61 Appendix A SOCS-OTS Please rate your level of functioning as it pertains to each item presented below. I cannot do this I have a lot of problems with doing this I have some problems with doing this I can do this well I can do this very well Bathe and/or shower Engage in sexual activity with a partner or myself Maintain closeness and intimacy with a romantic partner Provide care for other people and/or pets Move from one position or place to another Manage finances (i.e. processes of paying bills, budgeting, simple money transaction) Maintain my exercise routine and physical fitness Manage my medications Clean my home Do my yard work Perform home maintenance and repairs Plan, prepare, serve, and/or clean up meals. Grocery shop Rest and sleep Fully return to work Perform my job duties at prior level of expectation Engage in educational activities Participate in leisure activities Socialize with my family and friends Participate in community events Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 58 of 61 Appendix B Screen of Cancer Survivorship Occupational Therapy Services (SOCS-OTS) Instructions: Please check all items that you would like assistance with improving. Item Please check all that apply Bathe and/or shower Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) Provide care for others (e.g., childcare, caring for older parents, etc.) Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) Drive and move around the community (e.g., using public or private transportation) Manage finances Maintain my desired exercise routine and physical fitness Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Clean my home Do my yard work Perform home maintenance and repairs Plan, prepare, serve and/or clean up meals Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) [modified item Rest and sleep Engage in desired work performance and/or returning to work Engage in educational activities Participate in leisure activities Socialize with my family and friends Participate in community events Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene Engage in religious/spiritual activities, organizations, and/or practices Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 59 of 61 Appendix C Screen of Cancer Survivorship Occupational Therapy Services (SOCS-OTS) Instructions: Please check all items that you would like assistance with improving. Item Please check all that apply Bathe and/or shower Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) Provide care for others (e.g., childcare, caring for older parents, etc.) Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) Drive and move around the community (e.g., using public or private transportation) Manage finances Maintain my desired exercise routine and physical fitness Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Clean my home Plan, prepare, serve and/or clean up meals Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) [modified item Rest and sleep Engage in desired work performance and/or returning to work Engage in educational activities Participate in leisure activities Socialize with my family and friends Participate in community events Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene Engage in religious/spiritual activities, organizations, and/or practices Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 60 of 61 Appendix D Screen of Cancer Survivorship Occupational Therapy Services (SOCS-OTS) Instructions: Please check all items that you would like assistance with improving. Item Please check all that apply Bathe and/or shower Engage in sexual activity and/or sexual expression (e.g., hugging, kissing, foreplay, masturbation, oral sex, intercourse) Engage in activities to give and receive affection needed to successfully interact in close personal relationships (e.g., friends, family members, intimate partners) Provide care for others (e.g., childcare, caring for older parents, etc.) Move self from one position or place to another (e.g., reaching, moving in bed, moving in wheelchair, performing transfers, walking during tasks and transporting items) Drive and move around the community (e.g., using public or private transportation) Manage finances Maintain my desired exercise routine and physical fitness Manage my medications (e.g. filling prescriptions at the pharmacy, understanding medication instruction, taking medications on a routine basis, refilling prescriptions in a timely manner) Clean my home Plan, prepare, serve and/or clean up meals Grocery shop (e.g., prepare grocery list, order online/go to store, bag groceries, unloading groceries, paying) [modified item Rest and sleep Engage in desired work performance and/or returning to work Participate in leisure activities Socialize with my family and friends Manage my health (e.g., communicate with healthcare providers, understand recommendations for care plan, manage symptoms and conditions, etc.) Toilet and toilet hygiene Dress/undress (e.g., fasten and adjust clothing and shoes, remove personal devices/prosthetic devices/splints) Personal hygiene and grooming (e.g., using a razor, applying cosmetics, combing or brushing hair, caring for nails, applying deodorant, brushing/flossing teeth, denture care) Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 61 of 61 Signature Certificate Document Ref.: XRFVX-UNFIU-DBXKN-D3NR6 Document signed by: Katie Polo Verified E-mail: polok@uindy.edu IP: 184.170.166.188 Date: 15 Dec 2021 13:19:32 UTC Kate DeCleene Huber Verified E-mail: decleenek@uindy.edu IP: 199.8.28.36 Date: 15 Dec 2021 13:26:27 UTC Document completed by all parties on: 15 Dec 2021 13:26:27 UTC Page 1 of 1 Signed with PandaDoc.com PandaDoc is a document workflow and certified eSignature solution trusted by 25,000+ companies worldwide. ...
- Creator:
- Taylor Henson, Jordan Romero, Kenzie Salzbrenner, Daria Seccurro, Shanele Tyler, and Michael Wroblewski
- Date:
- 2021
- Type:
- Capstone Project
-
- Keyword matches:
- ... Running head: BUILDING THE SOCS-OTS 1 Building the Screening of Cancer Survivorship - Occupational Therapy Services (SOCS-OTS) Ally Delks, Isabel Mazanowski, Kayla Mitchell, Moriam Olorunoje, Tara Nastoff, and Cassidy Stinson University of Indianapolis Author Note Study Principal Investigator: Katie Polo, DHS, OTR, CLT-LANA Co-Investigators: Ally Delks, Isabel Mazanowski, Kayla Mitchell, Tara Nastoff, Moriam Olorunoje, & Cassidy Stinson Department and Institutional Affiliation: School of Occupational Therapy, University of Indianapolis BUILDING THE SOCS-OTS 2 Abstract Purpose: The purpose of this study was to identify the occupational performance deficits experienced by cancer survivors in order to help develop a screening tool that would indicate a need for occupational therapy services in cancer survivorship care (before, during, and after being diagnosed with cancer). Methods: The delphi technique was used to develop a screening tool aimed to determine the need for occupational therapy services among cancer survivors. Multiple rounds were used to obtain feedback from content experts to continuously refine the screening tool (Keeney, Hasson, & McKenna, 2011). Researchers gathered ideas from survivors about their occupational performance deficits as well as information from current literature to inform and build and enhance screening tool items. Results: The most prominent occupational performance deficits indicated in the screening tool included rest and sleep, sexuality and intimacy, health and wellness, and performing job duties. Discussion: The current study validated occupational performance limitations found in current oncology literature, providing further insight into the relevance of these limitations in a group of cancer survivor content experts in order to inform the SOCS-OTS. Conclusion: Researchers of this study developed items for the SOCS-OTS based on issues faced by survivors validated by experts personal experiences as well as supporting literature. This study drew on the experiences of content experts with cancer to determine occupational performance deficits that could deem occupational therapy services necessary for cancer survivors. Further development of the SOCS-OTS is necessary to create an occupation-focused screening tool. Keywords. cancer survivorship, oncology, occupational therapy, screening tool Introduction BUILDING THE SOCS-OTS 3 In 2019 there were over 16.9 million cancer survivors in the United States (National Cancer Institute, 2020; Alfano et al., 2011). It is projected that this number will increase to 22.2 million by 2030, due to advanced medical treatments thus, creating a better life prognosis (National Cancer Institute, 2020; Alfano et al., 2011). With an increase in individuals surviving cancer, researchers note that there is an increased number of long term side effects including physical, emotional, and cognitive impairments creating barriers for survivors return to daily living (Alfano et al., 2012; Morrison & Thomas, 2014; Schmidt, Wiskemann, & Steindorf, 2018). Therefore, cancer survivorship is now defined as a chronic condition (Baxter, Newman, Longpr, & Polo, 2017), because these side effects can occur for more than ten years after treatment (Ness et al., 2013). Cancer survivors have many problems with some occurring more commonly than others. Common issues found in the literature consist of fatigue, sleep disturbances/insomnia, lack of education, psychosocial issues, cognitive impairments, and returning to work/daily activities all of which can significantly impact cancer survivors occupational performance and quality of life (Zhou et al., 2017; Crist, 2013; Haun, 2014; Burg et al., 2015). Brennan, Butow, Spillane, & Boyle (2016), found at least one problem in more than 76% of cancer survivors, with the average number of problems per cancer survivor being 6.2. Literature Review Fatigue Fatigue is one of the most common problems of cancer survivors (Crist, 2013; Hauken et al., 2013; Le et al., 2017; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; StergiouKita et al., 2016). A study conducted by Crist (2013) concluded that fatigue, aches and pains, and sleep changes are side effects that impact quality of life for cancer survivors most often. Zhou et al. (2017) highlighted how the lack of acknowledgment of factors such as education on BUILDING THE SOCS-OTS 4 diet, exercise, and sleep can lead to a range of physical consequences like fatigue and pain. Palmer et al. (2017) concluded that the quality of life of cancer survivors was lower than that of the general population due to physical side effects such as fatigue. Survivors dealing with fatigue find it to be one of the most difficult late effects because it is a different type of tired than what they experienced prior to their diagnosis, according to Hauken et al. (2013). Sleep Disturbances/Insomnia Difficulty sleeping or insomnia is another common problem that is either going untreated or is treated ineffectively (Jakobsen et al., 2018; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; Zhou et al., 2017). Without proper care, sleep disturbances may become a chronic issue that can add to other issues such as fatigue, pain, and depression (Zhou et al., 2017). In a qualitative study looking at the everyday life of breast cancer survivors participants reported difficulty falling asleep and staying asleep which in turn reduced their energy throughout the day (Jakobsen et al., 2018). Survivors found ways to cope with their lack of energy by searching for occupations that give them a meaningful and active lifestyle (Jakobsen et al., 2018). Zhou and colleagues (2017) described how cancer diagnosis and treatments can cause pre-existing sleep problems to worsen, or give rise to new sleep disturbances, yet reported that most survivors were not receiving effective treatment for insomnia. This could be due to the healthcare providers not being trained sufficiently in evaluating and treating these types of issues (Zhou et al., 2017). Because the gap in identification and treatment of sleep disturbances in cancer patients, a more in-depth screening tool is needed to further investigate and attend to this issue for these individuals. Lack of Education BUILDING THE SOCS-OTS 5 Another common issue found in the literature is lack of education about cancer survivorship care provided to cancer survivors by health care providers (Burg et al., 2015; Hauken et al., 2013; Jakobsen et al., 2018; Morrison & Thomas, 2014). In a study by Crist (2013), only 17.8% of cancer survivors reported having received information regarding survivorfocused care post-treatment. Palmer et al. (2017) found the number of concerns for cancer survivors can be decreased if they are advised early on how to communicate their concerns. Furthermore, participants in a study conducted by Jakobsen et al. (2018) expressed concern about not having their questions answered. Survivors knew their symptoms were problematic, but they did not understand why they were happening because they were not informed (Jakobsen et al., 2018). According to Schmidt & Steindorf (2018), cancer survivors felt that their needs for counseling and support were unmet. Morrison & Thomas (2014) found that participants were left to decide when was an acceptable time to return to work, as well as what accommodations should be available to them due to lack of advice given by health care providers. According to a study by Hardcastle, Maxwell-Smith, Hagger, OConnor, and Platell (2018), there is a lack of healthy lifestyle promotion, such as healthy eating, physical activity, and strategies to stay healthy in colorectal cancer survivors following treatment. Participants desired support but received conflicting information (Hardcastle et al., 2018). A qualitative study conducted by Hauken et al. (2013) described young adult cancer survivors experiences reentering everyday life and uncovered four recurring themes among the participants: (1) lack of preparation, (2) late effects pervading entire life, (3) lack of understanding, and (4) being neither sick nor healthy (Hauken et al., 2013). The participants felt alone and unprepared, which they attributed to a lack of knowledge or communication from the physician about the issues related to their survivorship (Hauken et al., 2013). BUILDING THE SOCS-OTS 6 Although some of the disconnect could be due to lack of communication or knowledge by the physicians (Hauken et al., 2013), the divide could also be due to physicians not being sufficiently trained in treating certain needs such as sleep disorders (Zhou et al., 2017). Because there is a lack of information and education provided to cancer survivors in regards to their survivorship, they have a harder time adjusting to their life changes, previous roles, and responsibilities (Keesing, Rosenwax, & McNamara, 2016). Occupational therapy can play a role in addressing these issues; however, the findings from a retrospective cohort study imply survivors and oncology practitioners lack awareness of occupational therapy, hindering access to beneficial services for cancer survivors (Pergolotti, Cutchin, Weinberger, & Meyer, 2014). Psychosocial Issues Mental and emotional health conditions such as depression, anxiety, feeling down, and feelings of helplessness are common problems among cancer survivors in the literature (Burg et al., 2015; Crist, 2013; Hauken et al., 2013; Le et al., Mitchell, Ferguson, Gill, Paul, & Symonds, 2013; 2017; Palmer et al., 2017). Haun et al. (2014) learned that cancer survivors had a higher rate of depression and anxiety when compared to the general population. A study by Palmer et a.l (2017) found that close to one-third of their participants reported issues with anxiety and some reported concerns about experiencing depression. In a study concerning an evaluation of current referral practice, Zimmermann-Schlegel et al. (2017) found most physicians agreed there are not enough psycho-oncologic services for cancer survivors. Nearly fifteen percent of physicians evaluated reported not referring survivors to psychosocial services nor providing services themselves; although, most agreed that survivors would benefit from these services (Zimmermann-Schlegel et al., 2017). Hauken et al. (2013) and Crist et al. (2013) also concluded psychosocial issues, such as depression and anxiety, were main themes of concern in BUILDING THE SOCS-OTS 7 participants. Schmidt, Wiskemann, and Steindor (2018) documented that families, employers, peers, and friends of breast cancer survivors possess high expectations for them to quickly return to the same performance levels as before diagnosis, after minimal recovery time. This can cause stress and frustration for survivors as they may be unable to meet these expectations due to decreased cognitive and emotional function (Schmidt, Wiskemann, & Steindorf, 2018). Cognitive Impairments Cancer survivors report concerns of having cognitive impairments after treatment such as problems with concentration and memorization (Jakobsen et al., 2018; Palmer et al., 2017; Player et al., 2014). Vordermair (2009) found that following treatment 30-60% of women with breast cancer will experience chemo brain, a term used for cognitive impairments after receiving cancer treatment. Cognitive impairments negatively affected participants in areas of daily routines, employment duties, and hobbies to the point that they tended to avoid these tasks (Player et al., 2014). Although participants used strategies to deal with cognitive difficulties, none of the strategies were provided by a health professional (Player et al., 2014). The lack of ability to cope with cognitive impairments can decrease cancer survivors quality of life (Player et al., 2014). Return to Work/Daily Activities Returning to work and/or other daily activities is another area of need that is unmet in the cancer survivorship population (Crist, 2013; Hauken et al., 2013; Jakobsen et al., 2018; Le et al., 2017; Morrison & Thomas, 2014). A study by Crist (2013) found that participants diagnosed thirteen years prior to the study were still experiencing issues in work productivity caused by problems such as fatigue and cognitive impairments. Many of the participants in a study by Jakobsen et al. (2018) were unable to continue working or had to significantly cut back their BUILDING THE SOCS-OTS 8 hours. Those who were not employed prior to their diagnosis also found it difficult to return to their daily routines (Jakobsen et al., 2018). A study conducted by Le et al. (2017) concluded that being able to perform day-to-day activities such as preparing meals and light yard or housework were within the most common problems of participants. While some participants reported sadness because of the inability to fully engage in prior occupations, others noted that not working allowed them time to participate in different, but still important, occupations (Jakobsen et al., 2018). Occupational therapists can play a role in survivorship care, because it is the only profession that helps people across the lifespan to do the things they want and need to do through the therapeutic use of daily activities (occupations) (AOTA, 2019). According to Hwang, Lokietz, Lozano, and Parke (2015) only 4.5% of cancer survivors are currently referred to occupational therapy services. Research by Hwang et al. (2015) supported that cancer survivors believed occupational therapy services would have been beneficial during ongoing changes affecting quality of life following treatment. Although literature highlights many changes in quality of life, there is currently no reliable and valid occupation-focused screening tool to aid healthcare providers in referral to occupational therapy in order to address these needs. This gap in care warrants the need for a tool focusing on the problems of cancer survivors that can be addressed by occupational therapy. Thus, the purpose of this study is to develop an occupation-focused screening tool (SOCS-OTS) that will indicate a need for occupational therapy services in cancer survivorship care. Method Research Design BUILDING THE SOCS-OTS 9 The delphi technique was used to develop a screening tool aimed to determine the need for occupational therapy services among cancer survivors. The basis of the Delphi method is that a group opinion is more reliable than an individuals and is selected when subjective opinions are needed on a relevant issues (Keeney, Hasson, & McKenna, 2011). Multiple rounds are used to obtain feedback from content experts to continuously refine the screening tool (Keeney, Hasson, & McKenna, 2011). Researchers therefore gathered ideas from survivors about their occupational performance experiences in order to develop and enhance screening tool items. We used the first two steps of the guidelines in scale development to determine the specificity of the construct for the screening tool and the generation of an item pool, respectively (DeVellis, 2017). In step one, we gathered information about cancer survivors occupational performance limitations, for example fatigue, memory/cognition, anxiety/depression, and pain/peripheral neuropathy, that impact occupational participation indicating the possible need for occupational therapy services. In step two, we used a deductive approach to gather data and themes within the literature to write items for the screening tool. This approach is recommended because it involves logically acquiring evidence to support a general idea (Taylor, 2017). This was done by comparing the constructs of occupation from the Occupational Therapy Practice Framework (OTPF) with the existing literature for inclusion of items in developing the first draft of the screening tool. The Model of Occupational-Participation for Cancer Survivorship (MOPCS) helped guide the development by providing an occupational participation perspective, which facilitated a holistic approach (Loh & Jonsson, 2016). We utilized an inductive approach to analyze the data and feedback received from the questionnaire. Inductive reasoning is important to generalize statements from specific observations (Taylor, 2017) thus, we used this approach to refine the screening tool after BUILDING THE SOCS-OTS 10 receiving feedback from the content experts. Specifically, in each round it allowed for us to find redundancy of items expressed in similar content but stated in different ways. The use of the deductive and inductive approach ensures content validity within this study. The visual diagram displays the number of rounds and provides information on questionnaire formation (See Figure 1). Content Experts Thirteen content experts for the inductive round, 44 for round 1, and 45 for round 1B were recruited using snowball sampling through social media sites and personal/professional contacts, and willing national cancer support organizations. Inclusion criteria consisted of individuals: (a) diagnosed with cancer at or after 18 years of age, (b) fluent in English, and (c) have access to a computer/smartphone with the internet. Content experts varied in age, cancer type, and occupational performance limitations. Many similar studies use 15 to 35 experts to gain evidence to support claims (Gordon, 1994); therefore, we initially aimed for 45 content experts to account for attrition. This study was exempt from the process of being reviewed by the Institutional Review Board at the University of Indianapolis because it was not human subject research. Data Collection An online questionnaire platform, Qualtrics, was used to administer the questionnaire, collect data, and analyze the data. Content experts completed the questionnaire in their respective locations. Inductive Round The inductive round served as a pilot study for content experts. Ten adult cancer survivors and two occupational therapy oncology experts comprised the participants of the pilot BUILDING THE SOCS-OTS 11 study and served to inform changes for the questionnaire. The demographic questions were presented to content experts to screen for the inclusion criteria. The questionnaire was administered to ensure the content validity of the tool. The questionnaire entails questions for participants to rate occupational performance deficits they may experience, such as How severely is/has your sexual activity/intimacy been impacted? See Appendix A for the Inductive Round Screening Tool. Round 1 instrument The first round aimed to gather demographic information about the panel and determine if the items in the questionnaire were relevant by asking opinions on potential included items. The demographic questions asked experts to provide the following information: name, phone number, cancer diagnosis, and years since the most recent cancer diagnosis. Content experts were asked to respond to yes or no questions about whether their cancer has made it difficult for them to perform certain daily activities. At the end of the questionnaire, experts could provide overall feedback on the format of the screening tool. See Appendix B for Round 1 Screening Tool. Round 1B instrument The statements were re-formatted based on feedback from Round 1 from the phrase I have difficulty performing to My cancer diagnosis has made it difficult to... A priori consensus agreement was set at 80% among experts for each item to be included (Keeney et al., 2011). The content experts were also asked to provide overall feedback on the structure of the tool in an open-ended question at the end of the questionnaire. See Appendix C for Round 1B Screening Tool. Data Analysis BUILDING THE SOCS-OTS 12 Qualtrics was used to analyze demographic and item response data of the content experts by descriptive statistics. The descriptive statistics include sample size and percentage of content experts who selected each answer determining if items reached 80% consensus. Initial items were refined and reformulated based on the patterns that emerged from the thematic analysis of the open-ended questions in the Delphi Round 1. Results All content experts met the inclusion criteria for our research. Thirteen content experts participated in the inductive round, 44 content experts participated in Delphi Round 1, and 45 content experts participated in Delphi Round 1B. Throughout each round, content experts represented a variety of cancer types. The types of cancer represented in each round are displayed in Table 1. In the inductive round, content experts rated the following items as most severely impacted by their cancer diagnosis: sex and intimacy, care for others, health and wellness routines, maintaining the home, rest and sleep, leisure activities, and social participation. Content experts were then asked to provide symptoms that predominantly affected the activities above. According to the content experts responses on the questionnaire, these activities were affected predominantly by fatigue and pain, however, anxiety and depression also impacted multiple activities. Results from the inductive round are displayed in Table 2. In the Delphi Round 1, content experts answered from a nominal scale of yes or no if the item was relevant to difficulties they experienced when performing occupations during their cancer survivorship. After Round 1, no items met a priori of 80% consensus; however, we found the following items were most relevant to content experts due to receiving 40% or higher BUILDING THE SOCS-OTS 13 consensus: rest and sleep, sex and intimacy, and work performance. The next most relevant items reached between 30% and 39% consensus: maintaining the home, meal preparation, shopping, caring for others, transportation, and health and wellness management. Results from the Delphi Round 1 are displayed in Table 3. We used a thematic analysis from the open-ended questions in the Delphi Round 1 to inform changes to the tool that included adding education as an item, breaking down items into more specific tasks, the wording of the items, and the format of the tool. In the Delphi Round 1B, no items reached a priori consensus of 80%; however, several items reached 40% or higher consensus: engaging in sexual activity with myself or a partner, maintaining closeness and intimacy with a romantic partner, maintaining health and wellness routine, rest and sleep, and performing job duties at prior level of expectation. The items that reached between 30% and 39% consensus include: providing care for other people and/or pets, doing yard work, fully returning to work, and participating in leisure activities. Results from the Delphi Round 1B are displayed in Table 4. Discussion The purpose of this study was to identify the occupational performance deficits experienced by cancer survivors in order to help develop a screening tool that would indicate a need for occupational therapy services in cancer survivorship care. After reviewing the literature, the most common performance difficulties of survivors included fatigue, sleep disturbances/insomnia, lack of education, psychosocial issues, cognitive impairments, and returning to work/daily activities. We theorized that cancer survivors would benefit from the development of an occupational therapy oncology screening tool. We began phase one for BUILDING THE SOCS-OTS 14 developing a screening tool that would indicate a need for occupational therapy services in cancer survivorship care plans. Currently, there is a lack of known, reliable, and valid occupational therapy screening tools for cancer survivors. Funk & Lackie (2017) conducted a study to expand screening of occupational therapy services in oncology, yet the researchers only utilized a deductive approach from literature to develop their tool; thus, they did not seek critical feedback from cancer survivors (Funk & Lackie, 2017). Although we appreciate Funk & Lackies (2017) results as they aid greatly in the expansion of screening tools in oncology, their research was limited due to the lack of validity and reliability that may have been gained through use of blending inductive and deductive approaches. According to Boyatzis, (1998), Crabtree & Miller, (1999), and Day & Bobeva, (2005), using a deductive approach alone isnt always sufficient for high validity and reliability due to the strong support researchers give to the use of blending inductive and deductive approaches in the development of screening tools. Therefore, we used both a deductive and inductive approach to develop and refine the tool by using content experts to increase rigor and validity (Day & Bobeva, 2005) The current study validated performance limitations found in current oncology literature and provided further insight into the relevance of these limitations in a panel of cancer survivors. Throughout literature, cancer survivors report occupational performance deficits in rest and sleep, physical wellness, work, sexuality and intimacy, and in daily activities (Jakobsen et al., 2018; Hardcastle, Maxwell-Smith, Hagger, OConnor, and Platell, 2018; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; Zhou et al., 2017). Our study findings aligned with the literature as the cancer survivor content experts experience difficulties with rest and sleep (Jakobsen et al., 2018; Palmer et al., 2017; Schmidt, Wiskemann, & Steindorf, 2018; Zhou et al., BUILDING THE SOCS-OTS 15 2017) and difficulty returning to work (Jakobsen et al., 2018), therefore, these items should still be included in the SOCS-OTS. Although there is literature to support issues related to sexuality and intimacy in survivorship (Jun et al., 2011; Hwang, Lokietz, Lozano, & Parke, 2015), researchers show that sexuality and intimacy are areas of practice that therapists do not feel comfortable discussing (Areskoug-Josefsson et al., 2016). Content experts reported sexuality and intimacy as one of their top performance deficits supporting the inclusion of the sexuality and intimacy items in the SOCS-OTS. Our content experts reported difficulty maintaining wellness routines and participating in leisure activities. Previous researchers have found a correlation between leisure activities and increased quality of life in cancer survivors (Schlesinger et al., 2014), therefore, supporting the inclusion of this item on the SOCS-OTS. Our content experts also reported difficulty caring for others which is supported by past researchers. Implications for future studies include completion of the Delphi method (Rounds 2-4) to continue with refinement of the screening tool and development of a Likert scale for rating ability of performance. Additionally, further research is necessary to determine reliability and validity of the tool. (Muriel et al., 2012). As a result, this item was important to include on our screening tool. This study provides relative information on the occupational performance concerns of cancer survivors that can be applied to an occupational therapy screening tool. Limitations Study limitations in the development of the SOCS-OTS are present. The panel consisted of over 50% breast cancer survivors, which could create a bias towards occupational performance deficits specific to that cancer type. We were not able to verify inclusion of the screening tool items by traditional consensus value of 80% with the content experts, however, BUILDING THE SOCS-OTS 16 our results support inclusion of the items by aligning content experts occupational performance experiences with those found in literature. Conclusion This study drew on the experiences of content experts with cancer to determine occupational performance deficits that could deem occupational therapy services necessary for cancer survivors. This entailed a deductive and inductive approach that aligned the literature on the issues of our content experts. Our findings indicate that some survivors have difficulty engaging in sexual activity and intimacy, maintaining health and wellness routines, rest and sleep, and performing job duties at prior levels of expectation. Although we fulfilled phase one of the Delphi method, further development is necessary including reaching item consensus through content experts of oncology occupational therapists and researchers to finalize an occupational therapy screening tool. It is our hope that once the Delphi process is completed and the screening tool is validated, the SOCS-OTS will aid in the referral to the emerging practice of occupational therapy in oncology. BUILDING THE SOCS-OTS 17 References American Cancer Society. Cancer Facts & Figures 2018. American Occupational Therapy Association. (2014). Occupational therapy practice framework: Domain and process (3rd ed.). American Journal of Occupational Therapy, 68(Suppl. 1), S1-S48. Areskoug-Josefsson, K., Larsson, A., Gard, G., Rolander, B., & Juuso, P. (2016). Health care students attitudes towards working with sexual health in their professional roles: Survey of students at nursing, physiotherapy and occupational therapy programmes. 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Journal of Cancer Survivorship, 11(1), 7479. https://doi.org/10.1007/s11764-016-0564-1 BUILDING THE SOCS-OTS 22 Table 1 Percentage of Content Experts with Each Type of Cancer Inductive Approach Delphi Round 1 Round 1B Type n (%) n (%) n (%) Blood 2 (15) 5 (10) 3 (5) Brain 2 (15) 0 (0) 0 (0) Breast 4 (31) 29 (54) 33 (59) GI 3 (23) 2 (4) 2 (4) Gynecological 2 (15) 3 (6) 3 (5) Head/Neck 2 (15) 2 (4) 1 (2) Lung 2 (15) 0 (0) 0 (0) Prostate 2 (15) 3 (6) 3 (5) Skin 3 (23) 4 (8) 5 (9) Soft Tissue Sarcoma 2 (15) 1 (2) 1 (2) Thyroid 2 (15) 3 (6) 3 (5) Urinary/Renal 3 (23) 0 (0) 1 (2) Other 1 (8) 1 (2) 1 (2) Note. The total sample size (N) for the Inductive Approach, Delphi Round 1, and Round 1B are N= 13, N=44, and N=45 respectively. n = number of content experts with each type of cancer, (%) = the percentage of content experts with each corresponding cancer type. Content experts could select more than one cancer type; one person could be contributing to multiple cancer type percentages. BUILDING THE SOCS-OTS 23 Table 2 Inductive phase: Occupations Most Severely Impacted by Cancer Diagnosis Occupation Extremely (n) Very (n) Moderately (n) Slightly (n) N/A (n) Self-care 1 1 0 4 7 Sexual Activity/Intimacy 2 1 0 3 5 Care for Others 0 2 1 3 6 Transportation 0 1 1 2 7 Managing Finances 0 0 0 2 10 Health and Wellness Routines 1 1 2 2 6 Maintaining the Home 1 2 1 2 6 Meal Preparation 0 2 1 1 8 Shopping 1 0 1 1 9 Rest and Sleep 0 3 2 1 6 Job Performance 0 1 2 2 7 Leisure Activities 1 2 2 1 6 Social Participation 0 2 1 3 6 Note. The total sample size (N) for the Inductive Approach, N= 13. (n) = number of content experts indicating Extremely, Very, Moderately, Slightly, or N/A. BUILDING THE SOCS-OTS 24 Table 3 Delphi Round 1: Relevancy of Occupations to Occupational Performance Difficulties Yes No n (%) n (%) Self-care 12 (27) 32 (73) Maintaining Home 17 (39) 27 (61) Meal Preparation 14 (32) 30 (68) Shopping 17 (39) 27 (61) Rest and Sleep 24 (55) 20 (45) Caring for Others 15 (34) 29 (66) Transportation 13 (30) 31 (70) Managing Finances 5 (11) 39 (89) Health/Wellness Routines 15 (34) 29 (66) Sex/Intimacy 18 (41) 26 (59) Work Performance 18 (41) 26 (59) Leisure Activities 12 (27) 32 (73) Social Participation 12 (27) 32 (73) Occupation Note. The total sample size (N) for the Delphi Round 1, N=44. n = number of content experts indicating yes or no (%) = the percentage of total content experts from Round 1. BUILDING THE SOCS-OTS 25 Table 4 Delphi Round 1B Yes No n (%) n (%) Bathe/Shower 6 (13) 39 (87) Engage in Sexual Activity 21 (48) 23 (52) Maintain Intimacy 18 (41) 25 (59) Care for Others 15 (33) 30 (67) Move from One Position/Place to Another 9 (20) 36 (80) Manage Finances 5 (11) 40 (89) Maintain Wellness Routine 22 (49) 23 (51) Manage Medications 5 (11) 40 (89) Clean my Home 13 (29) 32 (71) Do Yard Work 14 (31) 31 (45) Home Maintenance/Repairs 13 (29) 32 (71) Meal Preparation 13 (29) 32 (71) Grocery Shop 13 (29) 32 (71) Rest/Sleep 23 (51) 22 (49) Fully Return to Work 16 (36) 28 (64) Perform Job Duties at Prior Level 18 (41) 26 (59) Engage in Educational Activities 10 (22) 35 (78) Participate in Leisure Activities 15 (33) 30 (67) Socialize with Family/Friends 12 (27) 32 (73) Participate in Community Events 11 (25) 33 (75) Occupation Note. The total sample size (N) for the Delphi Round 1B, N=45. n = number of content experts indicating yes or no (%) = the percentage of total content experts from Round 1B. BUILDING THE SOCS-OTS 26 Figure 1 Deductive Approach OTPF framework & existing literature to inform item development Formulate inclusion criteria for participants Preparing set of items for Inductive Approach Collect qualitative data for questionnaire Alter the design and item structure based on participant Delphi Round 1 and 1B Sample size: 44 and 45 respectively Objective: To determine the significance and feasibility of the items included from the deductive and inductive approaches. Data collected: Nominal scale of yes or no was used with additional space for feedback on each item. Qualtrics email reminders Major revisions done to the item structure of the questionnaire as per recommendations from participants Decision on Delphi progress Analyze the items return from Round 1 and 1B Subjective misinterpretation from the participants led to termination of the Delphi questionnaire BUILDING THE SOCS-OTS 27 Appendix A Inductive Round: Cancer Survivor Survey Start of Block: Demographics Q1.1 Are you fluent in English? o Yes (1) o No (2) Skip To: End of Survey If Are you fluent in English? = No Q1.2 Current age o 18-35 (1) o 36-55 (2) o 55+ (3) Q1.3 Gender o Male (1) o Female (2) o Other, please specify (3) ________________________________________________ BUILDING THE SOCS-OTS Q1.4 Ethnicity o American Indian or Alaskan Native (1) o Asian (2) o Black or African American (3) o Hispanic/Latino (4) o White (5) o Two or more ethnicities (6) o I prefer not to answer (7) Q1.5 Age of initial diagnosis o 18-35 (1) o 36-55 (2) o 55+ (3) 28 BUILDING THE SOCS-OTS 29 Q1.6 Please indicate the type of cancer(s) you were diagnosed with by selecting which stage(s) with which you were diagnosed (check all that apply throughout your survivorship journey) Does Noninvasive not Stage Stage Stage Stage Ductal Carcinoma apply 1 (13) 2 (5) 3 (9) 4 (10) (DCIS) *breast (4) cancer only (11) Blood related cancers (i.e. Leukemia, Lymphoma, Multiple Myeloma) (1) Brain cancer (2) Breast cancer (3) Gastrointestinal cancers (i.e. oesophagus, gallbladder, biliary tract, liver, pancreas, stomach, small/large intestine, rectum, anal) (4) Gynecological cancer (5) Head and neck cancers (i.e. larynx, throat, lips, mouth, nose, salivary glands) (6) Lung cancer (7) Prostate cancer (8) Skin cancer (9) Soft tissue sarcoma (i.e. muscle, tendon, fat, nerves, blood vessels, lymph) (10) Thyroid cancer (11) Urinary and Renal cancers (i.e. bladder and kidney) (13) Other, please specify (12) BUILDING THE SOCS-OTS 30 Q1.7 What treatment have you undergone at any point in your cancer survivorship journey? (check all that apply) Surgery (1) Chemotherapy (2) Radiation therapy (3) Immunotherapy (4) Hormone Therapy (5) Stem Cell Transplant (6) Targeted Therapy (7) Precision Medicine (8) Complimentary or Alternative medicine (11) None (10) Other, please specify (9) ________________________________________________ Q1.8 Are you currently undergoing treatment? o Yes (1) o No (2) Q1.9 Have you ever received occupational therapy services in relation to your cancer survivorship? o Yes (1) o No (2) Q2.1 How severely is/has your ability to perform self-care activities been impacted? (i.e. grooming, bathing/showering, toileting) BUILDING THE SOCS-OTS 31 *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.4 If How severely is/has your ability to perform self-care activities been impacted? (i.e. grooming, b... = Does not apply Q2.2 Please select what factors you feel are impacting or have impacted each activity (this can range from slightly impacted to very seriously impacted) (check all that apply). *Please answer according to the time in your survivorship that was most severely impacted. Pain/Peripher Fatigu Memory/Cognitio Anxiety/Depressio Othe al neuropathy e (1) n (2) n (3) r (5) (4) Bathing/Showerin g (1) Toileting (2) Dressing (3) Functional mobility (moving from one position or place to another, includes walking during daily activities and transportation of objects) (4) Grooming (5) BUILDING THE SOCS-OTS 32 Skip To: Q2.3 If Please select what factors you feel are impacting or have impacted each activity (this can range... = Other Q2.3 If other please specify. ________________________________________________________________ Page Break Q2.4 How severely is/has your sexual activity/intimacy been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.6 If How severely is/has your sexual activity/intimacy been impacted? *Please answer according to the... = Does not apply Q2.5 What factors do you feel are impacting or have impacted your limitations in sexual activity/intimacy? (check all that apply) BUILDING THE SOCS-OTS 33 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Medical treatment (surgery, medication, etc.) (6) Other, please specify (5) ________________________________________________ Q2.6 How severely is/has your ability to provide care for others been impacted? (i.e. children, spouse, pets, etc.) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.8 If How severely is/has your ability to provide care for others been impacted? (i.e. children, spouse... = Does not apply Q2.7 What factors do you feel are impacting or have impacted your ability to provide care for others? (check all that apply) BUILDING THE SOCS-OTS 34 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.8 How severely is/has your use of transportation and moving around in the community been impacted? (i.e. driving, walking, biking, use of public transportation) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.10 If How severely is/has your use of transportation and moving around in the community been impacted?... = Does not apply Q2.9 What factors do you feel are impacting or have impacted your use of transportation? (check all that apply) BUILDING THE SOCS-OTS 35 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Medical treatment (surgery, medication, etc.) (6) Other, please specify (5) ________________________________________________ Q2.10 How severely is/has managing your finances been impacted? (i.e. processes of paying bills, budgeting, simple money transaction) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.12 If How severely is/has managing your finances been impacted? (i.e. processes of paying bills, budget... = Does not apply Q2.11 What factors do you feel are impacting or have impacted your ability to manage your finances? (check all that apply) BUILDING THE SOCS-OTS 36 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.12 How severely is/has developing, managing, and maintaining routines for health and wellness promotion been impacted? (i.e. physical fitness, nutrition, medication management) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.15 If How severely is/has developing, managing, and maintaining routines for health and wellness promot... = Does not apply Q2.13 Please select what factors you feel are impacting or have impacted each activity. (this can range from slightly impacted to very seriously impacted) (check all that apply) BUILDING THE SOCS-OTS 37 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue Memory/Cognition Anxiety/Depression Pain/Peripheral Other (1) (2) (3) nueropathy (4) (5) Physical fitness (1) Nutrition (2) Medication management (3) Skip To: Q2.15 If Please select what factors you feel are impacting or have impacted each activity. (this can range... != Other Q2.14 If other please specify. ________________________________________________________________ Q2.15 How severely is/has your ability to maintain your home been impacted? (i.e. household cleaning, laundry, yard work, gardening) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.17 If How severely is/has your ability to maintain your home been impacted? (i.e. household cleaning, l... = Does not apply Q2.16 What factors do you feel are impacting or have impacted your ability to maintain your home? (check all that apply) BUILDING THE SOCS-OTS 38 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.17 How severely is/has your ability to plan, prepare, serve, and/or clean up meals been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.19 If How severely is/has your ability to plan, prepare, serve, and/or clean up meals been impacted? *... = Does not apply Q2.18 What factors do you feel are impacting or have impacted your ability to plan, prepare, serve, and/or clean up meals? (check all that apply) BUILDING THE SOCS-OTS 39 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.19 How severely is/has shopping been impacted? (i.e. preparing shopping list, selecting, purchasing, and/or transporting items) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.21 If How severely is/has shopping been impacted? (i.e. preparing shopping list, selecting, purchasing,... = Does not apply Q2.20 What factors do you feel are impacting or have impacted your ability to shop? (check all that apply) BUILDING THE SOCS-OTS 40 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.21 How severely is/has your rest, sleep preparation, and/or sleep participation been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.23 If How severely is/has your rest, sleep preparation, and/or sleep participation been impacted? *Plea... = Does not apply Q2.22 What factors do you feel are impacting or have impacted your rest, sleep preparation, and/or sleep participation? (check all that apply) BUILDING THE SOCS-OTS 41 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.23 How severely is/has your job performance been impacted? *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.25 If How severely is/has your job performance been impacted? *Please answer according to the time in y... = Does not apply Q2.24 What factors do you feel are impacting or have impacted your job performance? (check all that apply) BUILDING THE SOCS-OTS 42 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.25 How severely is/has your participation in leisure activities been impacted? (i.e. hobbies and interests) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: Q2.27 If How severely is/has your participation in leisure activities been impacted? (i.e. hobbies and int... = Does not apply Q2.26 What factors do you feel are impacting or have impacted your participation in leisure activities? (check all that apply) BUILDING THE SOCS-OTS 43 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ Q2.27 How severely is/has your social participation been impacted? (i.e. participating in activities in the community or with family and friends) *Please answer according to the time in your survivorship that was most severely impacted. o Extremely severe (1) o Very severe (2) o Moderately severe (3) o Slightly severe (4) o Does not apply (5) Skip To: End of Survey If How severely is/has your social participation been impacted? (i.e. participating in activities in... = Does not apply Q2.28 What factors do you feel are impacting or have impacted your social participation? (check all that apply) BUILDING THE SOCS-OTS 44 *Please answer according to the time in your survivorship that was most severely impacted. Fatigue (1) Memory/Cognition (2) Anxiety/Depression (3) Pain/Peripheral neuropathy (4) Other, please specify (5) ________________________________________________ BUILDING THE SOCS-OTS 45 Appendix B Screen of Cancer Survivorship - OT Delphi: Round 1 Start of Block: Demographics Q1 In the first round of this questionnaire, investigators are seeking to understand the relevance of these items in relation to your cancer survivorship experiences. Please complete the demographic questions including your full name and phone number at the beginning of the questionnaire. It is important that the investigators can identify your responses in case we need to reach out to you for further questions. Q2 First and last name ________________________________________________________________ Q3 Phone Number ________________________________________________________________ BUILDING THE SOCS-OTS 46 Q4 Please indicate the type of cancer(s) you were diagnosed with (check all that apply throughout your survivorship journey) Blood related cancers (i.e. Leukemia, Lymphoma, Multiple Myeloma) (1) Brain cancer (2) Breast cancer (3) Gastrointestinal cancers (i.e. oesophagus, gallbladder, biliary tract, liver, pancreas, stomach, small/large intestine, rectum, anal) (4) Gynecological cancer (5) Head and neck cancers (i.e. larynx, throat, lips, mouth, nose, salivary glands) (6) Lung cancer (7) Prostate cancer (8) Skin cancer (9) Sarcoma (i.e. bone or soft tissue such as muscle, tendon, fat, nerves, blood vessels) (10) Thyroid cancer (11) Urinary and Renal cancers (i.e. bladder and kidney) (13) Other, please specify (12) ________________________________________________ BUILDING THE SOCS-OTS 47 Q5 How many years has it been since your most recent cancer diagnosis? o Less than 1 year (1) o 1 year (2) o 2 years (3) o 3 years (4) o 4 years (5) o 5 years (6) o 6 years (7) o 7 years (8) o 8 years (9) o 9 years (10) o 10+ years (11) End of Block: Demographics Start of Block: Survey Q6 The purpose of this questionnaire is to understand if you have had any trouble engaging in daily activities during your survivorship (from time of diagnosis to present day). While filling out the questionnaire please indicate "Yes, this item is relevant to a concern I have had at some point in my survivorship journey" if you have ever had an issue with the activity listed or "No, this item is not relevant" if you have never had issues performing that activity. At the end of the questionnaire you will have the opportunity to provide overall feedback for anything else you feel should be included. Click the next button to get started! BUILDING THE SOCS-OTS 48 Q7 I have difficulty performing self-care activities (i.e. grooming, bathing/showering, toileting). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (7) ________________________________________________ Q8 I have difficulty maintaining my home (i.e. household cleaning, laundry, yard work, gardening). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (6) Please provide item specific feedback here (7) ________________________________________________ Q9 I have difficulty planning, preparing, serving, and/or cleaning up meals. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q10 I have difficulty shopping (i.e. preparing shopping list, selecting, purchasing, and/or transporting items). BUILDING THE SOCS-OTS 49 Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q11 I have difficulty engaging in rest and sleep. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q12 I have difficulty providing care for others (i.e. children, spouse, pets, etc.). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q13 I have difficulty using transportation and moving around in the community (i.e. driving, walking, biking, use of public transportation). BUILDING THE SOCS-OTS 50 Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q14 I have difficulty managing finances (i.e. processes of paying bills, budgeting, simple money transaction). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ BUILDING THE SOCS-OTS 51 Q15 I have difficulty developing, managing, and maintaining routines for health and wellness promotion (i.e. physical fitness, nutrition, medication management). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q16 I have difficulty engaging in sexual activity and intimacy. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q17 I am having difficulty returning to work or performing my job duties. Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ BUILDING THE SOCS-OTS 52 Q18 I have difficulty participating in leisure activities (i.e. hobbies and interests). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q19 I have difficulty engaging in social participation (i.e. participating in activities in the community or with family and friends). Yes, this item is relevant to a concern I have had at some point in my survivorship journey. (1) No, this item is not relevant. (2) Please provide item specific feedback here (6) ________________________________________________ Q20 Please provide overall feedback or suggested changes for the tool. ________________________________________________________________ BUILDING THE SOCS-OTS 53 Appendix C Cancer Survivor Questionnaire: Delphi Round 1B Start of Block: Survey Q1 First and last name ________________________________________________________________ Q2 Phone Number ________________________________________________________________ BUILDING THE SOCS-OTS 54 Q7 Please indicate the type of cancer(s) you were diagnosed with (check all that apply throughout your survivorship journey) Blood related cancers (I.e. leukemia, lymphoma, multiple myeloma) (1) Brain cancer (4) Breast cancer (5) Gastrointestinal cancers (I.e. oesophagus, gall bladder, biliary tract, liver, pancreas, stomach, small/large intestine, rectum, anal) (6) Gynecological cancer (7) Head and neck cancer (I.e. larynx, throat, lips, mouth, nose, salivary glands) (8) Lung cancer (9) Prostate cancer (2) Skin cancer (3) Sarcoma (I.e. bone or soft tissue such as muscle, tendon, fat, nerves, blood vessels) (10) Thyroid cancer (11) Urinary and renal cancers (I.e. bladder and kidney) (12) Other, please specify (13) ________________________________________________ BUILDING THE SOCS-OTS Q8 How many years has it been since your most recent cancer diagnosis? o Less than 1 year (1) o 1 year (2) o 2 years (3) o 3 years (4) o 4 years (5) o 5 years (6) o 6 years (7) o 7 years (8) o 8 years (9) o 9 years (10) o 10+ years (11) 55 BUILDING THE SOCS-OTS Q4 My cancer has made it difficult to... 56 BUILDING THE SOCS-OTS 57 Yes (1) No (2) Move from one position or place to another (5) o o o o o o o o o o Manage finances (i.e. processes of paying bills, budgeting, simple money transaction) (6) o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o Bathe and/or shower (1) Engage in sexual activity with a partner or myself (2) Maintain closeness and intimacy with a romantic partner (3) Provide care for other people and/or pets (4) Maintain my exercise routine and physical fitness (7) Manage my medications (8) Clean my home (9) Do my yard work (10) Perform home maintenance and repairs (11) Plan, prepare, serve, and/or clean up meals. (12) Grocery shop (13) Rest and sleep (14) Fully return to work (15) Perform my job duties at prior level of expectation (16) Engage in educational activities (17) Participate in leisure activities (18) Socialize with my family and friends (19) Participate in community events (20) BUILDING THE SOCS-OTS Q6 If you have any feedback on the format (wording, clarity, structure, etc.) of the questionnaire, please provide it below. ________________________________________________________________ End of Block: Survey 58 ...
- Creator:
- Ally Delks, Isabel Mazanowski, Kayla Mitchell, Moriam Olorunoje, Tara Nastoff, and Cassidy Stinson
- Date:
- 2020
- Type:
- Capstone Project