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... 1 A Well Kept Secret, Identifying Facilitators and Barriers to Occupational Therapy Referral by United States Cancer Healthcare Professionals Olivia Witteborg, Korrin Schalhamer, Morgan Jones, Alexandria Gilley, Cara Murphy, Taylor Brown, Rachel Graves December 2023 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 Polo DHS, OTR, CLT-LANA 2 A Research Project Entitled Title: A Well Kept Secret, Identifying Facilitators and Barriers to Occupational Therapy Referral by United States Cancer Healthcare Professionals Submitted to the School of Occupational Therapy at the University of Indianapolis in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree. Morgan Jones, Korrin Schalhamer, Olivia Witteborg, Alexandria Gilley, Cara Murphy, Taylor Brown, Rachel Graves OTS Katie Polo DHS, OTR, CLT-LANA Accepted on this date by the OTD Program Director: Alison Nichols, OTR, OTD OTD Program Director Associate Professor of Occupational Therapy Date 12/13/23 3 TABLE OF CONTENTS TABLE OF CONTENTS.................................................................................................................. 3 SCOPING REVIEW......................................................................................................................... 5 Scoping Review...........................................................................................................................5 Methods....................................................................................................................................... 7 Data Extraction and Synthesis...............................................................................................8 Inclusion/Exclusion Criteria..................................................................................................9 Procedures to Address Trustworthiness and Credibility....................................................... 9 Results....................................................................................................................................... 10 Theme 1: Oncologist's Perspectives on Rehabilitation....................................................... 11 Theme 2: Personal Characteristics of Patients.................................................................... 12 Theme 3: Characteristics of Cancer.................................................................................... 12 Theme 4: Multidisciplinary Coordination and Communication......................................... 13 Discussion................................................................................................................................. 14 Limitations...........................................................................................................................15 Implications......................................................................................................................... 16 Conclusions............................................................................................................................... 16 PHASE II RESEARCH STUDY.................................................................................................... 18 Research Abstract......................................................................................................................18 Introduction............................................................................................................................... 19 Methods..................................................................................................................................... 20 4 Research Team.....................................................................................................................20 Research Design.................................................................................................................. 20 Participants.......................................................................................................................... 21 Data Analysis...................................................................................................................... 22 Credibility and Trustworthiness.......................................................................................... 22 Results....................................................................................................................................... 23 Participants.......................................................................................................................... 23 Findings............................................................................................................................... 23 Barriers to Referral.............................................................................................................. 23 Participant Context.............................................................................................................. 26 Knowledge of Patient Client Factors & Side Effects.......................................................... 31 Visual Diagram....................................................................................................................32 Discussion................................................................................................................................. 32 Limitations...........................................................................................................................34 Practice Implications........................................................................................................... 35 Conclusion.................................................................................................................................36 REFERENCES................................................................................................................................37 APPENDIX A................................................................................................................................. 43 APPENDIX B..................................................................................................................................46 APPENDIX C..................................................................................................................................48 5 SCOPING REVIEW Scoping Review The number of people living with or beyond cancer (LWBC) is rising, from 15.5 million in this decade, to 20 million in the next (Alfano et al., 2017). Cancer survivorship is defined as the span of time between diagnosis until the end of life (Loh & Jonsson, 2016). With a survival rate of 67% overall, there is a large percentage of people who live with the side effects of cancer and medical treatments throughout their entire lifetime (Siegel et al., 2020). A diagnosis, as well as treatment for cancer, can lead to a range of short-term, long-term, and late-onset symptoms (Alfano et al., 2017). Cancer impacts physical, cognitive, and emotional aspects of life as well as other important body processes and functions through the harsh treatments necessary to rid the body of the cancer cells (Baxter et al., 2017). Treatments can cause one or more side effects including pain, fatigue, impairment in emotional functioning, anxiety, depression, insomnia, and body image (Loh & Jonsson, 2016). More consequences of cancer treatment can be balance and mobility problems, bladder and bowel issues, communication difficulties, cognitive problems, etc. (Alfano et al., 2017). These limitations, or side effects, can interfere with the patient's ability to be functional at work and participate in lifelong activities (Alfano et al., 2017). Although cancer treatments are used to save lives, survivors are left with physical and psychosocial complications that can prevent engaging in everyday life activities and can result in a compromised quality of life (Baxter et al., 2017). These effects can make it hard for individuals LWBC to continue with their typical daily activities such as going back to work, self-care, leisure, social activities, etc. (Alfano et al., 2017). 6 Cancer is recognized as a chronic condition that has a draining impact on areas in a patient's life (Loh & Jonsson, 2016), which requires care beyond a medical standpoint. However, there is a lack of survivorship care including rehabilitation that can prolong the physical, cognitive, and emotional side effects of cancer (Baxter et al., 2017). Therefore, a broader psychosocial-emotional and occupational functioning model of care is needed, throughout the cancer continuum, that addresses occupational participation for reengaging with work, daily activities, and leisure (Loh & Jonsson, 2016). With the side effects of cancer negatively impacting an individual's quality of life, the use of rehabilitation including occupational therapy (OT), physical therapy (PT), and speech therapy (SLP) can help to reduce these impacts and improve the function of the individual (Stout et al., 2021). Cancer rehabilitation is defined as restoring the level of independence and functional ability that one had before cancer (Pergolotti, 2014). The ability to resume the performance of daily activities, work, and engagement in meaningful activities after cancer continues to be overlooked in rehabilitation (Loh & Jonsson, 2016). The need for cancer survivorship rehabilitation is evident; however, many rehabilitation professions including OT are underutilized (Pergolotti, 2014). Physician unawareness and poor communication between fields lead to a lack of referrals needed to access care (Pergolotti, 2014). Evidence supports the use of rehabilitation to treat physical, cognitive, and performance impairments to manage oncology treatment-related symptoms (Stout, 2021). With the absence of screening and monitoring cancer patients for rehabilitation services, many of these symptoms and problems go unaddressed. Routine screening and referrals to rehabilitation services should be implemented across all oncology settings (Alfano et al., 2017). For individuals LWBC, OT addresses health, well-being, and participation to enhance length and quality of life (Loh & Jonnsson, 2016; American Occupational Therapy Association 7 [AOTA], 2020). Utilizing this holistic approach, the person is focused on as a whole, rather than the isolated aspect, which addresses all aspects of cancer effects (AOTA, 2020). With the known benefits that OT can provide, there is a need to understand why services are underutilized in those LWBC, including exploring barriers to OT referral. Currently, researchers are conducting a systematic review exploring reported barriers to cancer rehabilitation from health care professionals' point of view; however, results are not yet determined (Cadmus-Bertram & Douglass, 2021). Understanding barriers provides background information on the referral process, though they do not improve utilization. Exploring supports provides implementable solutions to the overall problem of the lack of referrals to rehabilitation services for people LWBC (Boyden et al., 2010). The purpose of this systematized literature review is to explore the factors surrounding referral to OTfrom healthcare providers in cancer care that include barriers as well as support to referral. The specific question used to guide this literature review is, "In cancer healthcare professionals, which factors influence the referral of individuals LWBC to rehabilitation services throughout their survivorship continuum?" The objective is to address why individuals LWBC are not receiving referrals to rehabilitation as well as what strategies can be implemented to receive referrals in the future. Methods The Model of Occupational-Participation for Cancer Survivorship (MOPCS), is an emerging model of survivorship care, augmented by the International Classification of Functioning (ICF) by the World Health Organization, that addresses the gap in the provision of services that focuses on the resumption of life occupations and engagement in meaningful activities throughout the survivorship continuum (Loh & Johnson, 2016). The MOPCS 8 incorporates a number of critical areas for persons LWBC, such as distinguishing between health issues prior to cancer, health conditions throughout the disease, and health conditions after cancer has been eradicated (Loh and Johnson, 2016). The use of the MOPCS assisted in organizing thinking with regard to article inclusion for the supports and barriers of cancer rehabilitation referrals throughout the survivorship continuum. Data Extraction and Synthesis To begin the search process, a systematized approach was used that followed a sequential procedure with the elements of a systematic review including comprehensive searching, leveling of articles, quality assessment, and bias reporting. A grey literature search was conducted through PROSPERO and Trip Database. In collaboration with an expert in systematic reviews, a faceted search of indexed databases including; PubMed, CINAHL, Academic Search Complete, Medline, and PsychInfo was conducted. A hand search was used to accompany the original searches of Medline. The search criteria were bound by referral, the one main search term, followed by an extensive list of cancer, rehabilitation, and medical professional sub-terms. Filters were used to narrow the search which included 'date-range', 'language', and 'subject heading'. The search included all publications since 2011. We extracted data in order to compare and understand the presented outcomes. The full list of search terms used is listed below in Table 1. Database search results were collected and imported into Zotero (Version 5.0, 2021) software before transferring into Rayyan software where exclusion and inclusion criteria were handled (Ouzzani et al., 2016). The results from each search device were gathered, collected, and reviewed for duplicate entries. All citations and abstracts were reviewed by at least two independent reviewers. All citations that were accepted by the reviewers were included in a full-text review which was conducted by at 9 least two of the same reviewers. Through both screening processes, a third reviewer handled and resolved any disagreements. Inclusion/Exclusion Criteria Studies were included if they (1) include persons living with/or beyond cancer, (2) include any age, race, and gender, (3) were in English, (4) include barriers and/or supports to referrals, (5) any international articles written in English, and (6) include one or more key terms. We excluded studies not reported in English, any studies prior to 2011, and if there was a lack of focus on cancer survivorship. Quality Assessment and Analysis In this systematized review, we analyzed the study sample, population, and setting, the level of evidence, and the quality rating. We described the level of evidence by using the Johns Hopkins Evidence-Based Practice Model which includes five levels of appraisal, as indicated in Table 2. Articles classified as levels 1-3 were used for the purposes of this review to reduce bias in the outcomes. Procedures to Address Trustworthiness and Credibility Researchers started using an audit trail at the beginning of the study that included index tracking of initial and final coding, and notes on decision-making to increase dependability and confirmability (Creswell, 2013). Collectively, the research team engaged in continual reflexive thinking by considering and challenging how biases and past experiences might influence data interpretation (Creswell, 2013). Additionally, both the first and last authors (K.P. & K.L), experienced qualitative researchers that performed the data analysis in the first Israeli study, did not actively code data for this study. They did supervise the other researchers during the analysis process so as to not influence or bias results from the first to second study. Various types of data were collected to assure triangulation and establish credibility including video recordings, transcriptions, and field notes from focus group discussions (Creswell, 2013). Member Checking 10 occurred at the end of each focus group, by having note takers summarize discussions to the participants for changes, additional comments and for confirmability and to support credibility (Creswell, 2013). Results A database search was conducted, yielding a total of 862 articles that were imported into Zotero (Version 5.0, 2021) for deduplication, identifying 154 duplicate articles. There were 708 articles from database searching and 59 articles from hand-searching methods that were imported into the Rayann software for manual appraisal (Ouzzani et al., 2016). Due to the inclusion criteria, 657 articles were excluded and 53 articles were assessed for eligibility to answer the PICOT question. Fifteen articles met the full inclusion criteria from the database search. This process is outlined in the PRISMA Flow Chart depicted in Table 1, and Appendix G includes the article title, leveling of evidence, and findings relevant to this review as shown in Table 2. In total, 15 articles were assessed for bias risk using the Risk of Bias table for Randomized Controlled Trial (RCT) and Non-RCT, as well as the Risk of Bias table for Before-After (Pre-Post) Studies with No Control Group (Higgens et al., 2016; National Heart Lung and Blood Institute, 2014). There were 12 articles that demonstrated low bias risk (Oldenburg et al., 2020; Marshall et al., 2019; Mousten et al., 2015; Silva et al., 2020; Nwosu et al., 2012; Wadhwa et al., 2018; Mertens et al., 2017; Low et al., 2018; Schenker et al., 2014; Johnston et al., 2021; Mousten et al., 2019; Feld et al., 2019), two articles demonstrated moderate bias risk (Weaver et al, 2018; Johnson et al., 2010), and one article demonstrated high bias risk. (Maiwald et al., 2021). Four emerging themes including (1) the oncologists' perspectives on rehabilitation, (2) personal characteristics of patients, (3) characteristics of cancer (4) multidisciplinary communication, were consistently found to be related to referral to rehabilitation. All of the 11 articles included in this review were related to referral to palliative care, and the database search revealed that there is little to no research related to the referral of patients LWBC to other areas of rehabilitation services. Theme 1: Oncologist's Perspectives on Rehabilitation Seven articles focused on the oncologist's perspective of rehabilitation. There were five articles that were Level III qualitative studies (Johnson et al., 2011; Nwosu et al., 2012; Weaver et al., 2018; Feld et al., 2019; Schenker et al., 2014), one was a Level IV quantitative (Meritens et al., 2017), and one was a Level III case-control (Oldenberg et al., 2020). One of the barriers found was that many oncologists believed the care they were providing was sufficient, and they could treat the patients' needs on their own without any rehabilitation services (Weaver et al., 2018; Feld et al., 2019). Doctors claimed to have established a rapport with patients and knew the extent of their issues, but patients were most likely uninformed throughout treatment leading to a lack of knowledge of referral (Johnson et al., 2011; Nwosu et al., 2012). This has led to the idea of physicians' concern about burdening patients with extra treatment as they worry the patient might feel overwhelmed (Feld et al., 2019). Authors from three articles indicated that physicians do not want individuals to experience or feel abandoned during treatment: one article was Level IV quantitative, one was a Level III multisite qualitative interview study, and one was Level III qualitative. Oncologists tend to worry about how patients will feel neglected throughout their treatment and how it could affect them (Schenker, 2014), even though these services can help with the transition to end-of-life care (Meritens 2017). 12 Theme 2: Personal Characteristics of Patients Three articles found personal characteristics, including race, age, gender, education level, and socioeconomic status (SES) influenced the rate of referral to palliative care. All three articles were Level 3 articles; one was a quantitative study, one was a population-based cohort study, and one was a quantitative retrospective cohort. One quantitative study revealed Black patients were less likely to receive palliative referrals than white patients (Lee et al, 2021). Researchers of a population-based cohort study demonstrated younger patients were more likely to be referred than older individuals and females received more referrals than males (Mosuten et al, 2015). Data from the same study showed those with higher levels of education had a higher rate of referral than those with lower levels of education (Mosuten et al, 2015). Additionally, researchers of a quantitative retrospective cohort study found there was a disparity in both referrals to palliative care and attendance of services between members of low and high-socioeconomic-status groups. Members of lower SES received fewer referrals and were less likely to attend than their higher SES counterparts (Dalton et al, 2019). Theme 3: Characteristics of Cancer Five articles found that various characteristics of cancer, including specific symptoms, type of cancer, and stage of disease were related to patients' referral to rehabilitation services: two were Level III qualitative studies, one was a Level III Quantitative Retrospective Cohort study, one was a Level III retrospective review, and one was a Level III mixed-method study. Researchers from these articles indicated that various symptoms, including nausea or vomiting, pain, gastrointestinal difficulties, and difficulty breathing were viewed by physicians as a reason to refer patients to palliative care (Johnson et al., 2010; Feld et al., 2019). 13 Malnourishment was a specific symptom that was related to earlier referral to palliative care than other symptoms patients experienced, as well as significant weight loss (Silva et al, 2020). In addition to symptoms prompting physician referral to palliative care, the stage of cancer a patient was diagnosed with was also related to referrals. Patients with stage III and IV tumors were more likely to be referred to palliative care than patients with stage I or II tumors (Silva et al, 2020), and patients who received a cancer diagnosis two or more years prior were more likely to be referred than those who received a diagnosis more recently (Wadhaw et al., 2018). Specific types of cancer, such as breast cancer, were more likely to be referred to palliative care earlier than other types of cancer (Low et al, 2018; Wadhaw et al, 2018). Theme 4: Multidisciplinary Coordination and Communication Six articles indicated that there was a lack of multidisciplinary coordination and inter-service communication between oncology professionals and rehabilitation services: one was a Level II case-control study, one was a Level II mixed methods study, three were Level III qualitative studies, and one was a Level III mixed methods study. An overarching finding from these studies was that there was insufficient communication between the professionals involved in caring for those LWBC, and the benefits of collaboration with other disciplines were not viewed to be worth the difficulties (Maiwald et al., 2021; Low et al., 2018). A barrier to referral noted by two studies was that oncologists were not educated on the benefits that rehabilitation services may provide their patients nor the aspects that may qualify a patient for rehabilitation (Schenker et al., 2014; Nwosu et al., 2012). The authors of the two articles demonstrated a potential lack of formal education on rehabilitation services within medical programs (Weaver et al., 2018; Oldenburg et al., 2020). There was a low percentage of 14 students in pediatric oncology fellowship programs who reported being required to have a rotation in palliative care services (Weaver et al., 2018). Additionally, students in medical school reported a lack of confidence in referring patients to rehabilitation services in terms of qualifications for rehabilitation and the benefits it can provide (Oldenburg et al., 2020). Discussion This systematized review considered the literature regarding the barriers and supports of referral of patients LWBC to rehabilitation services. Palliative care was found to be a prominent area of referral for patients LWBC compared with other rehabilitation services, such as physical or occupational therapy. There is strong evidence characterizing the barriers to referrals due to the oncologists' views or beliefs on the subject. These barriers include a lack of knowledge (87.6%) and awareness (85.6%) of the cancer rehabilitation services and how they can benefit a patient throughout their treatment (Yang et al., 2014). These findings support the evidence from previous articles indicating these barriers prevent a patient from receiving optimal treatment. There is limited evidence supporting the idea of lessening the burden on patients to prevent them from thinking the oncologist gave up on their treatment. There is strong evidence indicating that personal characteristics (including race, age, gender, education level, and socioeconomic status) contribute to lower rates of referral and subsequent poorer health outcomes for those with cancer (Lee et al, 2021, Mosuten et al, 2015). These findings suggest personal biases of providers who refer influence the rate of referral. Although it was found these characteristics hinder referral, previous literature did not find them to be a barrier to referral specifically, despite the indication that these characteristics resulted in 15 general poorer health outcomes for those with cancer (Halpern et al., 2016). These poor outcomes could be related to a lack of referral. There is strong evidence in the literature that the characteristics of cancer are a barrier to referral to rehabilitation services for patients LWBC. The diagnosis, prognosis, and symptoms of cancer were specific factors previously found in research to be barriers to referral (Hui et al., 2016; Lattanzi et al., 2010). These findings support the evidence from this systematized review and may indicate that patients who have early stages of cancer, good prognosis, or lack specific symptoms are overlooked when referring to rehabilitation services. There was not any previous research indicating multidisciplinary coordination and communication as a barrier to referral to rehabilitation for those LWBC. However, the evidence from this review demonstrates that six articles addressed multidisciplinary coordination and communication as a common barrier to referral. One specific barrier noted in these articles includes insufficient communication between healthcare professionals regarding the treatment plan and patients' status. This novel theme should therefore be explored further in research to determine the impact it might have on the referral of patients to rehabilitation services. Limitations Limitations of the systematized review include the design and methodology of the individual studies. The articles were primarily Level 3, which is a lower level of evidence, and there were no Level 1 articles (Higgens et al., 2016; National Heart Lung and Blood Institute, 2014). Despite this limitation, all but one article were found to be high quality, justifying their inclusion in this review. Several measures were taken to ensure comprehension of search strategies, however, it is possible that relevant studies were overlooked, creating a publication selection bias. 16 Additionally, a few of the studies included specific groups in their sample, therefore limiting the generalizability to the larger population of oncology. Some examples of these specific groups include samples from large academic medical sites (Feld et al., 2019), well-developed palliative care programs (Schenker et al., 2014), or areas with cultural taboos surrounding palliative care (Low et al., 2018). The oncologists' perspectives regarding the referral of individuals LWBC to rehabilitation services within these studies may not generalize to the overall population of oncologists. Implications Referral to rehabilitation services is hindered by a variety of factors that lead to subsequent underutilization of rehabilitation services across the cancer care continuum. Further research is needed to determine how to improve rates of referral. No existing literature indicates when referral to rehabilitation services should be implemented to produce effective outcomes. Additionally, this review indicated a novel theme of referral. This should be further examined in future literature since it is a novel finding. Research guided by an occupational-based theory could be beneficial in discovering where in the cancer care continuum rehabilitation referral would yield the most advantageous results for people living with and beyond cancer. Conclusions Referral to rehabilitation services is underutilized across the cancer care continuum for individuals LWBC. Barriers to referral include cancer care providers' lack of education about OT services, personal characteristics (sociodemographic characteristics) of patients, characteristics of patient's cancer, and lack of multidisciplinary communication. These barriers are supported by other literature reviews. However, multidisciplinary communication was not found as a barrier to referral in other literature reviews and is considered a novel finding. Further education and 17 research could aid in the reduction of barriers to referral for rehabilitation services for those LWBC. 18 PHASE II RESEARCH STUDY Research Abstract Those living with and beyond cancer (LWBC) have psychosocial and physical complications, compromising their quality of life (QoL). Occupational therapy (OT) offers a unique service promoting health, well-being, participation, and QoL. However, it has been revealed that OT services are underutilized in oncology care. Phase II of this international study explores the perspectives of healthcare professionals working with persons LWBC regarding the role of OT in oncology, as well as supports and barriers to OT referral. Data was collected through four focus groups with 17 participants. A multiple explanatory case study and a grounded theory approach were used to analyze data. Four overarching themes emerged, including "support for OT referral, knowledge of patient client factors & side effects, barriers to OT referral, and participant context," along with ten sub-themes. The limitations of this research may impact generalizability and depth, such as a predominance of female participants. Future research should examine the impact of education on OT scope of practice on OT referral and recruit participants in diverse ways to address limitations. Addressing system barriers and advocating for the scope of OT may lead to more OT referrals in oncology. Keywords: Cancer, referrals, OT, barriers, supports 19 Introduction Cancer is now considered a chronic condition for many people, which can impact returning to function, participation, and quality of life (Hunter et al., 2017). While cancer treatments' primary focus is to eliminate cancer and prolong one's life, survivors often face residual physical and psychosocial complications that lead to a compromised quality of life (Baxter et al., 2017). There is a strong need for rehabilitation services, specifically occupational therapy (OT), for those living with and beyond cancer (Baxter et al., 2017). Many individuals LWBC that are both in treatment or remission can experience adverse symptoms that influence their overall occupational performance and quality of life. The goal of OT is to maintain and restore function, reduce symptom burden, optimize independence, and improve the quality of life (Alfano et al., 2017). Rehabilitative and OT services are underutilized in oncology care despite the growing evidence and recommendations to regularly screen for the need for these services (Baxter et al., 2017; Stout et al., 2020). Currenlty, there is a paucity of literature surrounding the referral process to OT in cancer care. To support proper referral practices, other healthcare professionals in cancer care need to understand the role of OT and the indications for appropriate referrals (Oldenburg et al., 2017). A lack of referral can stem from a lack of knowledge regarding OT's role in oncology and the lack of communication between providers and employers. These professionals can help coordinate work-based programs with cancer rehabilitation for optimal effectiveness (Alfano et al., 2017). Some barriers that exist that impact referral to rehabilitation and OT services include a lack of knowledge of rehabilitation services by referral sources, understanding in who is appropriate for referral, a lack of rehabilitation services in oncology-based institutions or nearby 20 communities, and a lack of infrastructure supporting an easier referral process (Pergolotti et al., 2019). The purpose of this study was to investigate the perspectives of healthcare professionals in the United States who work with individuals LWBC regarding OT involvement in cancer care. Additionally, an overarching aim was to outline the current barriers and facilitators influencing referrals to OT during and after cancer treatment. The specific aims of this study were to explore the perspectives of healthcare professionals in the United States regarding 1) the role of OT in cancer care, 2) the need for OT services for cancer patients, 3) the current barriers to OT referral, and 4) what is needed to optimize referral. Methods Research Team This study was conducted by seven graduate students studying OT at the University of Indianapolis while receiving support from two experienced qualitative researchers. Of our four focus groups, two were led by student Taylor Brown, one was led by student Alexandria Gilley, and one was led by researcher and data collector Khawla Loubani. All researchers were female and received training through a data analysis research course. Student researchers did not have any relationships established with participants prior to the commencement of the focus groups. At the beginning of the focus group, the scheduled interviewer explained their participation alongside Dr. Katie Polo in this research project. Dr. Katie Polo served as the principal investigator of this research study. Research Design The research coordinators conducted a study using a multiple explanatory case study, allowing compelling evidence to be formed from each case and compared for analysis (Yin, 21 2018). The exempt review was processed through Helsinki, the primary institution's IRB in Israel, and the University of Indianapolis IRB entered into a reliance agreement for data collection in the United States. All participants were asked to give consent to participate through Qualtrics. Participants Researchers utilized purposive sampling methods, including professional contacts and recruitment by phone, email, flier, social media, and word of mouth. This type of sampling method allows the researchers to select individuals and sites that can provide information, as well as participants that relate to the reason for the study and the research problem (Creswell, 2013). Participants consisted of those who met the following criteria: (1) currently working in oncology or cancer care, (2) professional as a nurse, oncologist, social worker, or physician's assistant, and (3) located within the United States. Our goal was to conduct four focus groups consisting of four to six participants, because this number is ideal for identifying themes and conducting a cross-case theme analysis (Creswell, 2013). Data Collection Data was collected through four focus groups, consisting of four to five participants. An interview guide consisted of ten open-ended scripted questions; see Appendix B for details. Open-ended questions in the interview guide allowed the interviewees to open up and share their responses (Creswell, 2013). Other data sources included Qualtrics survey and team member field notes taken during the focus groups. The focus groups were recorded and transcribed verbatim via Zoom and Google Meets. There were no repeat interviews. The timing of the interview discussions averaged 33 minutes with a range of 30-36 minutes. Multiple research team members reviewed the focus group transcripts for accuracy. All participants completed a Qualtrics survey, including a consent form, before the start of the focus groups and demographic questions. 22 Data Analysis Data was analyzed for this case study using a grounded theory approach, which includes three stages: (1) open coding to identify key elements, (2) axial coding to identify relations between the elements, and (3) selective coding to create propositions and a theory to explain the relations (Strauss & Corbin, 1990). During open coding, transcripts from the focus groups were used to form codes or categories, which then formulated a codebook. This codebook allows detailed descriptions, themes, and interpretations of the data (Creswell, 2013). Seven researchers coded the data. Analysts and coders learned proper procedures for data analysis research through a data analysis research course. The data analysis process was supervised by two experienced qualitative researchers. The researchers individually coded the data from the focus groups, followed by collaborative coding in a group setting to derive themes with a consensus of at least five researchers. Data saturation was reached near the end of the second to last transcipt. Demographic data were analyzed using IBM SPSS Version 28 (IBM Corp., Armonk, NY). Credibility and Trustworthiness The use of multiple types of data collection, such as interview questions, detailed transcripts, and observations, permits the extensive amount of data collected from each focus group to be analyzed in great depth (Creswell, 2013). The research team used continual reflexive thinking throughout the process to assist in preventing personal biases thus increasing objectivity. Two experienced qualitative researchers reviewed and supported the data analysis process to ensure dependability and confirmability. Triangulation was used to establish credibility; the group collected various data methods such as video recordings, transcriptions, and field notes (Creswell, 2013). Note takers performed member checking by summarizing discussions to the participants 23 for to confirm intent of discussions, supporting credibility and confirmability (Creswell, 2013). The writers of the study described the participants and setting in detail which enables readers to transfer information to other settings, allowing for increased transferability (Creswell, 2013). Results Participants We recruited 17 professionals for this study: three oncologists, five nurse navigators, six nurses, and three social workers aged 30 to 66 years old. Participants' work experience ranged from 1 to 40 years. Demographics collected from the participants include age, gender, profession/specialization, practice state, prior referral to OT, possible collaboration with OT, and how collaboration with OT occurs. Participant demographics are shown in Table 1. Findings Four overarching themes emerged with subsequent subthemes. The theme support for OT referral consisted of subthemes (a) integration of OT into oncology; (b) knowledge of occupational performance; (c) knowledge of the scope of OT practice; and (d) ideas to support referral. The second overarching theme was knowledge of patient client factors and side effects. Theme three, barriers to referral, includes subthemes (e) insufficient awareness/knowledge of OT; (f) system barriers; (g) clinic barriers; and (h) patient barriers. The final theme, participant context, was separated into subthemes (i) profession; and (j) experience, interaction, and collaboration with OTs. Barriers to Referral Participants explained what is currently inhibiting the lack of referrals to OT in the oncology process. They were asked to describe their knowledge of the scope of OT, and several participant responses revealed a lack of understanding of the profession of OT and the role of OT 24 within oncology. One participant was able to provide a limited description of OT, saying I would say in general occupational therapy isobviously a form of therapyfocusing on those signed motor skills versus the big muscle groups and bone.[and] job related movement. A common topic of discussion was how PT and OT tend to get intertwined in that PT is more commonly known for their scope of practice. A participant shared, I think I kind of intermix PT and OT a little bit. If I was asked to really give a specific difference and who they see I probably wouldn't get it correct. Many expressed there is often confusion around the true description of the profession. One participant explained: You know I think, I think OT is a well-kept secret. Unfortunately, I think it's that you all don't market yourselves very well. Everybody knows what PT is. Everybody knows that. Unless we have something really specific, if somehow we happen to get referred to an occupational therapist, we don't know half of what you all do. You have a lot to offer but nobody knows you're nobody knows you're around. Participants expressed barriers in the system, especially regarding the insurance process for receiving OT services. Patients may not be able to afford all of the services, which can limit the treatment they can receive. A participant stated: We pretty aggressively hate on cancer centers of America they do this queen for a day system, where they have, you see a nutritionist, a PT, an OT, a chiropractor, etc. You know, they have to see all these different subspecialties and then make you individually bill for all of them. And the patient actually can't afford to go to all those subspecialists. So it's got a bad reputation in cancer for that reason. That, you know, we try to do everything under one roof as much as we can. 25 A prominent sub-theme is that clinics have difficulty making referrals due to other priorities, or oncologists might be unsure which service to refer to. A participant shared, We refer to physical therapy as a start, then occupational therapy as a second step or a parallel. Individuals mentioned that it would be helpful to delineate clearly who handles what in the intervention process. It was also mentioned how physicians have several patients to see on a day-to-day basis and often do not even think of OT at the moment as a referral option. A participant reported: I'll just be really honest, clinic, clinics are busy. Physicians are having trouble seeing a lot of patients. The nurses, unfortunately, unless they've been tuned in the nurses, don't think of it. And I think they just haven't been exposed enough. Oncologists also have to make referrals to these services, which can inhibit it from happening due to other priorities. Individuals voiced their opinion, The biggest barrier was the oncologists. We shouldn't wait on giving someone a service that is necessary while they're getting treatment but it was definitely in my experience an afterthought. Participants also shared how there may be a lack of OTs in the clinic, eliminating the ability to refer altogether. Patients often undergo several treatments at a time, which can drain their energy levels. Participants expressed how the universal trait of all cancer patients is fatigue and overwhelmingly tiring on a physical, emotional front. Patients also may not have the time or money to add other services to their schedule on top of what they are already doing. There may be a limited appointment window for these individuals, and adding another service can be overwhelming. A participant shared, I think oftentimes when the patient is in the throes of treatment, it's hard for them to think about adding an additional appointment. It was found that patients may also be more reserved when it comes to the need for OT or PT services and want to just focus on one treatment at a time. But it seems more times than not patients are so focused, driven on one treatment to the next, which, that's their reality 26 right now is Hey, I need to do this to get to the next step. Do this chemo. Do a CT. Let's see how it is. A participant explained how a lot of this can be due to a lack of awareness and resources on the patient side. Patients do not realize what else can help them as they are hyper-focused on other treatments. A participant explained: Some patients think that they've been through so much that they don't realize that they don't have to be in this kind of state; they can actually improve afterward as well some patients are thinking that this is their new normal. So we do want them to be able to do as much as they can on their own and improve. The individuals expressed barriers limiting referrals to OT during the cancer survivorship continuum. Participants expressed a lack of awareness or knowledge of OT, patient barriers, and how clinics tend to have other priorities in the referral process. Participant Context Participants expressed varied levels of context for OT. All participants had some knowledge of OT as a profession based on their personal experiences, professional interactions, and collaboration with OTs. Personal experience with OT included knowing occupational therapists or OT students and/or use of OT services for themself or a family member. A participant reported, My son was in OT when he was small so I'm familiar with that... then my sister is in OT school. So she often has to create different tools for people in certain situations. So that's what I know. Participant context of OT also came from professional interaction and collaboration with OTs. Most of the participant context of OT came from professional experiences working with OTs. Participants reported having knowledge of OTs' work with sensory processing disorders in pediatric settings and some knowledge of OTs' role in oncology. One participant stated, I do know the OT I worked with most closely when I was at radiation oncology. She 27 helped a lot with neuropathy issues and lymphedema issues. Additionally, a participant shared her experience with OTs helping patients post-mastectomy and post-node removal patients regain upper extremity function, By working with the OT clinics, she was able to regain function, you know, have a sleeve that fit gets fitted for one actually, you know, regained use of her dominant arm, which was a huge deal for her. Most participants relied on personal contact with OT as their source of knowledge for the scope of practice through family members receiving OT services rather than professional experience and being educated on OTs presence and role in their setting. Support for Referral Participants expressed their current understanding of the purpose of OT as it relates to the oncology setting. The subtheme of knowledge of OT scope of practice was delineated into partial knowledge and sufficient knowledge based on participants' descriptions of the services OT provides. Some responses indicated that participants had only partial knowledge of the scope of OT, focusing on side effects in patients resulting from oncology treatment or the cancer process. The participants mentioned several side effects that might prompt referral to OT in their settings, including weakness, fine motor difficulties, fatigue, and peripheral neuropathy. It was also noted that referrals to OT are made to address the long-term side effects that cancer or oncology treatments may yield. One participant stated, I refer to OT mostly for peripheral neuropathy and kind of assistance with tools like that... Generally, just again, trying to kind of assist with activities of daily living type things. But probably the neuropathy is the biggest referral. Participants mentioned fatigue and neuropathy multiple times, though these are a small part of the OT scope of practice. Other participants provided more details regarding why they might refer to OT services within the oncology setting, indicating a sufficient knowledge of the scope of OT practice. It was noted that the side effects from cancer or oncology treatments often impact 28 patients' daily activities, and a few participants discussed how specific side effects might relate to occupational performance deficits observed in patients. The participants demonstrated adequate knowledge of the profession of OT while also indicating an understanding of the impact that cancer treatments may have on their patient's overall function and engagement in occupations. It was reported that the impact of side effects was most often seen in patients' abilities to engage in activities of daily living and to function safely within the home environment. One participant stated: OT is a type of rehabilitation it's closely related to physical therapy but focuses more on task-oriented or real goal-specific things as opposed to generalizing strength training, for example, spoon use after stroke or swallowing efficiency, things like neuropathy or fatigue in cancer as opposed to the goal of having a general physical goal where like 30% of use back actually, having a focused goal with like an ADL purpose. A few participants expressed a deeper understanding of the scope of OT within the oncology setting through the relation of side effects to occupational performance deficits. It was also noted that participants used clinical experiences to describe how side effects impacted the occupational performance of oncology experience, and this application of knowledge provides support for referral to OT based on the integration of knowledge and experience with patients. This second subtheme, knowledge of occupational performance, was also separated into partial or sufficient knowledge of occupational performance. Partial knowledge was signified by the description of side effects loosely tied to occupational performance, while sufficient knowledge involved comments describing the impact of side effects on patients' occupations. One participant explained, I mean neuropathy can be as little as discomfort and walking or as much as writing with the pen or buttoning their shirt for balance issues. The side effect that was emphasized as 29 having a substantial impact on cancer patients was fatigue, as well as subsequent shortness of breath and weakness. These factors were noted to affect the functioning of the participants' patients negatively, and participants expressed that assistive devices are helpful in combating these side effects, indicating support for referral to OT services in those situations. Additionally, a few participants pointed out that it can be challenging to directly obtain information about changes in daily functioning from the patients. It was mentioned that family members often provide insight into the impact that side effects have on patients' daily lives. The participants' understanding of how to obtain information about patients' occupational performance supports the referral process, as it guides them in asking questions to the family members and the patients. One participant described this scenario, saying: I feel the family is usually where we hear that from. Usually, the family will say things like, you know I'm worried about them falling, um they're not eating like they should, they're not bathing well on their own, um they're not as active. So I feel like it's usually the family who will first make a comment about just their decrease in functioning. Another prominent subtheme in support of OT referral is the integration of OT in oncology. The participants discussed processes currently in place at their facilities that promoted OT involvement in oncology patient care. It was expressed that many participants try to ask patients about any side effects that they might be experiencing to identify the need for OT services earlier. Several participants also mentioned that their facilities incorporated inpatient OT into the care plan so that patients could receive OT services while still in the hospital, as it was noted that appointments in outpatient following the hospital stay may be difficult for patients to attend for various reasons. One of the participants worked as a breast surgeon in a facility that had a revital 30 program, which included an automatic referral as a part of the post-surgery protocol. The participant further described the program: So for me, we do refer all the post-surgical patients. And then we send them back during their survivorship period from my perspective because I'm the surgeon if they have continued range of motion issues and really the big thing we focus on is lymphedema. Other participants mentioned that their facilities schedule OT evaluations alongside other services to reduce the need for patients to attend multiple appointments. It was noted that a new protocol had recently been enacted in which OTs would come into the infusion clinic to assess the need for OT while patients were simultaneously receiving other treatments. The participant at this facility stated: So we recently have really tried to make use of our partnership with one of our local groups that we refer to a couple of times in this conversation and so what I have agreed to do with them, that group is to have them actually, physically come into the clinic in our infusion room and do some assessing, talking to the patients directly without, you know, kind of with an agreement that if they see something, then they'll say something to us and we'll refer based on that. So, just kind of an extra set of professional eyes. They know what they're looking for, or what they're listening for in conversations. In addition to identifying current processes supporting OT referral, the participants provided several suggestions to increase the referral of oncology patients to OT. This subtheme to support OT referral includes ideas to simplify and streamline the process of OT referral, as well as reduce the burden of OT appointments for patients. Several participants mentioned that coupling OT with other services, such as infusions or chemotherapy, could increase the utilization of OT services since it would address the issue of patients having multiple weekly appointments. It was also 31 stated that providing co-treatments with PT may be beneficial for the same reason of reducing patient burden. A common suggestion among participants was to provide more specific outlines of what OT can contribute to the oncology process, such as through evidence-based case studies. One participant explained: Yeah, I think like you mentioned case studies where it's outside the box, and we know the general overview of what you do. But there's a lot more to it and when we see that, then it helps to think "Oh my gosh. Yeah, this patient I can use that." Creating more specific resources for healthcare providers may increase confidence in their knowledge of OT scope of practice, which in turn can further increase referrals to OT services. Knowledge of Patient Client Factors & Side Effects Participants named many cancer treatment side effects that reduced patient occupational performance. Although client factors vary per client and are influenced by type of cancer, a typical client factor discussed by participants was fatigue. General fatigue inhibits patients from participating in the occupations they did prior to treatment, reduces performance, and interferes with socialization. One participant noted: One of the biggest issues is always fatigue, across the board is the fatigue, the energy loss. I think it's very dependent though on the cancer as well because if you're talking about head and neck cancer or you're talking about prostate cancer I mean it's very different. A participant, who is a practicing surgeon, stated loss of motion and sensory changes occur as a result of cancer-related surgeries, like mastectomies and lymph node removals. These client factors reduce mobility and interfere with client function. Multiple participants reported weakness and lethargy as culprits for decreased occupational performance: 32 I've had a couple of patients who just have a lot of weakness afterward and need to regain that strengthThe weakness had caused her to lose activity as well. So she was even having some shortness of breath and things because she just hadn't been as mobile as she should have been. Some client factors are long-term and impede client functioning after treatment is complete. Participants expressed that fatigue, chemo brain, and neuropathy or pain often persist and interfere with occupational performance after treatment concludes. This theme highlights a need for interventions to improve occupational performance for cancer patients during and after treatment. The client factors and side effects noted by participants (fatigue, weakness, sensory changes, loss of range of motion, cognitive changes, pain, lymphedema) fall under OT's scope of practice. Visual Diagram A visual diagram was developed to capture the interrelated conditions (subthemes) and interconnections of the supports and barriers to OT referral in oncology care, as noted by the focus group participants, see Figure 1. While supports and barriers were prominent in this research study, it was also essential to understand the relationships between participant context, knowledge of client factors, and solutions to support referrals. The diagram simulates using the participant context and their knowledge of client factors to create solutions to support referrals. This will trickle into using the wrecking ball to knock down the barriers, shown as the brick wall, most commonly reported by the participants to increase referral to OT. Discussion The current study was part of a more extensive international study between researchers in both Israel and the USA that explored the perspectives of healthcare professionals regarding the 33 barriers and facilitators of OT referral for persons living with or beyond cancer. The current study had four aims: 1) to explore the perspectives of healthcare professionals in the USA regarding the role of OT in cancer care, 2) to explore healthcare professionals' knowledge of the need for OT services for cancer patients, 3) to understand the current barriers for referrals to OT from healthcare professionals' perspectives, and 4) to explore what is needed from healthcare professionals perspective to optimize referral of patients to OT. The outcomes of this study have provided further evidence that there is room for improvement in the referral of OT in oncology care in the United States. Through multiple focus groups, four themes were commonly observed; support for referral, barriers to referral, knowledge of patient client factors/side effects, and participant context. Participants throughout the focus groups explained their prior experiences with OT referral in oncology care while also describing briefly what OT services provide for oncology care. This information produced the subthemes "Integration of OT in Oncology" and "Knowledge of the Scope of OT Practice." The subtheme "Knowledge of the Scope of OT Practice" comprised two types of knowledge: partial knowledge and sufficient knowledge. An intersection between the theme "knowledge of patient client factors/side effects" and the subtheme "knowledge of occupational performance" was identified a few times throughout data analysis, indicating that some participants inadvertently had partial knowledge about how patient side effects from cancer cause a decline in occupational well-being and performance. The other intersection that commonly arose throughout our data analysis was between "knowledge of patient client factors/side effects" and the subtheme "knowledge of the scope of OT practice". The results from this intersection show most participants had partial knowledge of the scope of OT 34 practice due in part to the experiences and side effects their patients experienced in cancer treatments. The current literature supports the findings of this study. Previous researchers identified the underutilization of OT services in oncology care regardless of growing evidence for the need for rehabilitative services. Data from this study found an underutilization of referrals to OT services for patients LWBC for a variety of reasons (Baxter et al., 2017; Stout et al., 2020). The primary reason for this lack of referral is a lack of understanding of OT's scope of practice and role within oncology. This finding is supported by previous literature which argues that healthcare professionals must understand OT's role in oncology to support proper referral practices (Oldenburg et al., 2017; Alfono et al., 2017). Data from this study indicates that the lack of occupational therapists available in outpatient oncology clinics and integrated into inpatient oncology settings is a barrier to OT referral. This indication is supported by Pergolotti et al.(2019), who cite the lack of services in oncology-based institutions or nearby communities as a barrier to referral. The current literature did not discuss patient barriers that directly impact referral to OT. Data from this study cites lack of time and resources as patient-specific barriers that prevent referral to OT. Many participants discussed patients being inundated with follow-up appointments and time, transportation, and patient energy as deterrents for referral. Limitations The limitations of this research may impact generalizability and depth. The predominant participation of individuals from the nursing field, with a scarcity of medical doctors such as oncologists and surgeons, introduces a possible bias that restricts the applicability of findings to a broader medical context. The overrepresentation of female participants adds another layer of 35 limitation, potentially skewing the results if gender-related nuances exist in the topic under investigation. However, data saturation was achieved by the end of the third focus group due to having consistent data over multiple samples to conclude. The use of Google Meets as a platform, combined with a group setting, may have inadvertently constrained the participants from freely expressing conflicting views or opinions that involve professionals from other disciplines. This limitation could compromise the diversity of perspectives essential for a comprehensive understanding of the subject matter. As such, it is crucial to acknowledge these constraints when interpreting the study's outcomes and to recognize the need for more diverse and extensive participant inclusion in future research endeavors. In addition, it is possible that focus group members felt unable to state opinions in a group setting due to having multiple professions or colleagues present. To offset this possible limitation, member checking was completed at the end of each focus group in which note-takers discussed the findings to allow for additional comments and changes and confirmability and credibility (Creswell, 2013). Practice Implications Throughout our interviews with oncology professionals, a common topic of underrepresentation and weak marketing of the OT profession was mentioned. Marketing allows professionals and consumers to function together and increase consumer satisfaction with products and services. This could increase understanding and knowledge of the scope of OT practice to improve referrals. A way to achieve this would be to create resources describing OTs' roles and services for other healthcare professionals to reference daily. These resources could also model methods of proper referral through the provision of patient examples detailing which symptoms warrant OT referral, as well as a list of clinics with available OT practitioners in the area. 36 Future research should further examine and explore the impact of education for OT referral sources surrounding OTs scope of practice. Specifically, if referral sources received education to OT services, does this impact referral rate and access to OT services. Future studies should recruit in different ways and for a more extended period of time to gain more oncology professionals' perspectives to address the limitations of the current study's results. Addressing barriers to referral, including streamlining referral processes and easing the burden of multiple appointments for patients, as well as providing training and resources regarding the scope of OT and indications for referral may lead to more OT referrals. Conclusion This study highlighted prominent themes discussed among oncology professionals regarding barriers and facilitators of OT referrals. There are barriers to OT referral within the oncology setting related to oncology providers' lack of knowledge of services, lack of education on referral processes, and lack of accessible therapy services. 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Corporation for Digital Scholarship. 43 Appendix A Table 1 Demographic data Participant 1 Age Education (Yrs.) level 47 MD Profession Med Specialization Practice Years in Collab. Active / Department Setting cancer care with OT Referral to OT Breast Academy 15 Yes (often) Yes Clinical Commun 23 No No Research ity 40 Yes Yes Surgeon 2 66 MA Nu Coordinator 3 60 BA Nu Thoracic Other Oncology (sometimes) Nurse Navigator 4 65 MA Nu Registered Other 40 No No Manager, Commun 4 No Yes Nursing ity 24 No Yes Nurse Abstractor 5 35 Associates's Nu Services 6 54 Associate's plus a year towards BSN Nu Primary Commun Clinic Nurse ity 44 7 45 BA Nu Clinic Nurse Commun 1 No No ity 8 - - Med Oncologist - - - - 9 - - Nu - - - - - 10 30 MA SW Oncology Hospital 4 No Yes Social Worker 11 56 MA SW Social Worker Hospital 7 No No 12 38 MD Med Medical Hospital 7 Yes Yes Oncologist 13 36 MA SW (sometimes) Program Commun Manager ity 8 No No 14 54 BA - - - - - - 15 49 BA Nu Nurse Commun 15 No Yes Navigator ity Breast Hospital 10 Yes Yes 16 43 Associate's Nu Navigator 17 47 Med Nu Mean (SD) Mean BA =4 Nurses- Median (SD) (23.5%) 10 (IQR) = MA= 5 (58.8%) N% 48.43 (29.4%) - (sometimes) - - Hospital= 4 (23.5%) Commun Median Yes = 4 Yes = 8 (47.1%) (IQR) (23.5% ( No= 5 (29.4%) ity= 6(35.3%) 10 (7-23) - No= 9 (52.9%) - 45 (11.3 MD = 2 Social 1) (11.8%) workers 3 Rang Associate=3 (17.6%) (5.9%) e= (17.6%) MD =3 Other=2 (17.6%) (11.8%) 30-66 Academy =1 Note. Three participants had missing demographic data. We attempted to contact them after the interviews to complete the missing information but were unable to reach them. All participants were women, except participants 8 and 12 were men. Med=Medicine; Nu=Nursing; SW=Social Work. 46 Appendix B Table 2 Interview Guide Interview Guide Study Aims Interview Questions Relating to Aims Aim 1: Explore the perspectives of healthcare What do you know about occupational professionals regarding the role of therapy in general? occupational therapy to the care of cancer What do you know regarding occupational patients. therapys role in oncology? Aim 2: Explore healthcare professionals How does cancer affect your patients daily knowledge of the need for occupational functioning and activities of daily living therapy services for cancer patients. (ADL)? What are the signs and/or indicators to refer your patients to occupational therapy? What limitations in your patients daily functioning might prompt you to refer to occupational therapy? What kind of functional impairments do your patients have? How does cancer affect patients daily functioning/routines? 47 Aim 3: Understand the current barriers to What are the reasons that cancer patients occupational therapy referrals from healthcare are not referred to occupational therapy? professionals perspectives. Aim 4: Explore what is needed to optimize What do you think is needed to optimize referrals to occupational therapy. the referral of your patients to occupational therapy? Additional Questions Is there anything else you would like to share? Note. The interview guide is sectioned into two different columns; the left colum indicates the studys specific aims while the right colum indicates interview questions that correspond to the study aims. 48 Appendix C Figure 1 Visual Diagram of Supports and Barriers of Referral to Occupational Therapy  ...

... The Mental Health Impacts of a Cancer Diagnosis Submitted to the Faculty of the College of Health Sciences University of Indianapolis In partial fulfillment of the requirements for the degree Doctor of Health Science By: Madeline Naylor, MSc Copyright June 22, 2023 By: Madeline Naylor, MSc All rights reserved Approved by: Lisa Borrero, PhD, FAGHE Committee Chair ______________________________ Liana Apostolova, MD, MSc, FAAN Committee Member ______________________________ Stephen Novak, MA, MS Committee Member ______________________________ Accepted by: Laura Santurri, PhD, MPH, CPH Director, DHSc Program Chair, Interprofessional Health & Aging Studies University of Indianapolis ______________________________ Stephanie Kelly, PT, PhD Dean, College of Health Sciences University of Indianapolis ______________________________ MENTAL HEALTH AND CANCER 1 The Mental Health Impacts of a Cancer Diagnosis Madeline Naylor Department of Interprofessional Health and Aging Studies, University of Indianapolis MENTAL HEALTH AND CANCER 2 Abstract Objective: This study aimed to understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer, and the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. Method: A qualitative study utilizing a basic interpretive approach was conducted, which included individual semi-structured interviews with seven participants that were undergoing treatments and diagnosed with cancer of any type and at any stage prior to the start of the COVID-19 pandemic. Interviews were conducted using a semi-structured interview guide to capture the participants experiences with their mental health and quality of life in relation to their cancer diagnosis. Results: Six major themes emerged from the interviews and included: emotional overwhelm, fear of the unknown, learning to adapt to a new normal, maintaining a positive outlook, the impact of the COVID-19 pandemic, and mental health not being addressed as part of the standard of care in oncology. The findings suggest that a significant proportion of oncology patients experience mental illnesses present at all stages of their cancer journey and increase during periods of longer and more intense treatment cycles. Conclusions: The results of this study highlight the need for comprehensive mental health care that is integrated into cancer care. They also demonstrate the importance of addressing the mental health needs of cancer patients throughout the entire cancer journey to improve the quality of life for cancer patients and their overall well-being. Keywords: cancer, oncology, quality of life, mental health MENTAL HEALTH AND CANCER 3 Acknowledgments There have been many people who have contributed to the successful completion of this project. The completion of this study could not have been possible without the expertise and commitment of my dissertation committee, Chair - Dr. Borrero, Analysis Expert Dr. Liana Apostolova, and Content Expert Stephen Novak. I am forever grateful for all the time you poured into this study and for your feedback and guidance. Dr. Borrero, I am so thankful you served as my committee chair. You kept the entire process running smoothly and guided me through the process in such a caring manner. Dr. Apostolova, a special thank you for all your mentorship and friendship over the years. Getting my first research position at IU led me to go in the research direction for my studies and career, and I am extremely thankful to have worked (and still work) with such brilliant and compassionate individuals. Steve, I am so glad our paths have crossed. You taught me to never forget the reason behind a research career, to bring lifesaving treatments to patients, something I will live by for the entirety of my career. I would also like to thank all the participants of this study who were willing to share their experiences. Their willingness to share their brave stories as a means to improve cancer care continued to inspire me to complete this research. Their positivity and beautiful outlook on life despite their struggles touched my life and I hope it can make a difference for anyone else who reads this. To my village of support that made it possible to get here today, a sincere thank you. First and foremost, I could not have completed this without the love and support of my husband and son. Brock and Stephen, I don't even have the words to describe my love and gratitude for you both walking this journey with me. You two are my world and I could not have done this without MENTAL HEALTH AND CANCER 4 you by my side. Brock, you were there every late night and early morning, greeting me with coffee and encouraging words. Thank you for pushing me through, encouraging me on my hardest days, being my rock, and being the best teammate. Stephen Michael, my sunshine. You are the reason I work hard each day. I hope you always reach for the stars and never settle. My mom and Mike, I am forever indebted to you for all the support you have given me over the years. Thank you for always being my cheerleader and always believing in me. You have always encouraged me to follow my heart, and both of you, along with our entire family, have been by my side every single step of the way. And, to my guardian angel, my dad. The reason behind this research. Thank you for always supporting me, encouraging me, and shaping me into the person I am today. You should be here to both get me through the hard days and celebrate my successes. I miss you every single day. I pray that I make you proud. MENTAL HEALTH AND CANCER 5 Contents Abstract ..........................................................................................Error! Bookmark not defined. Mental Health in Oncology Patients During the COVID-19 Pandemic ......................................... 8 Problem Statement ...................................................................................................................... 8 Purpose Statement ....................................................................................................................... 9 Research Questions ..................................................................................................................... 9 Significance of the Study ............................................................................................................ 9 Definition of Key Terms ........................................................................................................... 10 Literature Review.......................................................................................................................... 10 Mental Health and Cancer ......................................................................................................... 11 Cancer Care and Mental Health............................................................................................. 13 The Impact of Mental Health on Quality of Life ...................................................................... 15 The Pandemics Impact on Mental Health ................................................................................ 16 Research Considerations ........................................................................................................... 17 Conclusion................................................................................................................................. 18 Method .......................................................................................................................................... 19 Study Design ............................................................................................................................. 19 Participants ................................................................................................................................ 19 Procedures ................................................................................................................................. 20 Sampling and Recruitment .................................................................................................... 20 MENTAL HEALTH AND CANCER 6 Informed Consent .................................................................................................................. 22 Data Collection ...................................................................................................................... 23 Data Management and Analysis ............................................................................................ 24 Rigor/Trustworthiness ............................................................................................................... 26 Results ........................................................................................................................................... 26 Emotional Overwhelm .............................................................................................................. 28 Fear of the Unknown ................................................................................................................. 31 Adapting to a New Normal ....................................................................................................... 33 Maintaining a Positive Outlook ................................................................................................ 35 The COVID-19 pandemic ......................................................................................................... 38 Mental Health Not Being Addressed in Standard of Care ........................................................ 39 Discussion ..................................................................................................................................... 42 Limitations ................................................................................................................................ 48 Contribution to the Profession .................................................................................................. 48 Future Research ......................................................................................................................... 51 Conclusion .................................................................................................................................... 52 References ..................................................................................................................................... 54 Table 1: Participant Demographics Table..................................................................................... 62 Table 2: Theme Table ................................................................................................................... 63 Figure 1: Theme Concept Map ..................................................................................................... 73 MENTAL HEALTH AND CANCER 7 Appendix A: Volunteer Recruitment Information ........................................................................ 74 Appendix B: Study Information Sheet Informed Consent ............................................................ 75 Appendix C: Interview Guide ....................................................................................................... 78 Appendix D: Approval Letter ....................................................................................................... 80 MENTAL HEALTH AND CANCER 8 Mental Health in Oncology Patients During the COVID-19 Pandemic The mental health of oncology patients is an essential aspect of diagnosis and treatment that is not adequately addressed. Though heavily funded, the cancer research industry earmarks very little for the evaluation of potential psychological disorders from initial diagnosis through post-treatment surveillance (Martinez & Pasha, 2017). Yet, past research has shown that adults diagnosed with cancer are nearly six times more likely to develop a psychological disorder than adults not living with cancer (Martinez & Pasha, 2017). Furthermore, if left untreated, mental health disorders have been shown to hurt the progression of cancer at a molecular and cellular level (Martinez & Pasha, 2017). The focus on mental health in oncology patients is especially important during public health emergencies, such as the COVID-19 pandemic. For example, the long duration of quarantine and self-isolation during the COVID-19 pandemic had a profound negative impact on the mental health of a large portion of our population healthy or otherwise (Javed et al., 2020). Cancer patients are at a higher risk of serious illness, and many have expressed anxieties about leaving their homes and risking exposure (Aubry, 2020; Yildirim et al., 2021). Such protective measures often intensify feelings of loneliness (Aubry, 2020; Hwang et al., 2020). Frey et al. (2020) found that isolation, compromised immune systems, and delays in cancer care were associated with significantly higher levels of worry, anxiety, and depression. Problem Statement Patients with cancer are at a higher risk of developing psychological disorders that impact their disease progression and overall well-being. Thus, for many oncology patients, taking the precautionary measures associated with COVID-19, such as social distancing, may have contributed to the prevalence of psychological disorders. The negative implications of mental MENTAL HEALTH AND CANCER 9 health disorders in cancer patients have previously been shown (Aubry, 2020; Javed et al., 2020); however, the qualitative experiences of patients during the pandemic have not been widely studied. Purpose Statement The researcher aimed to understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The researcher also aimed to understand their perceptions of the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. Research Questions This study addressed the following question and sub-questions: 1. How do oncology patients describe the relationship between their mental health and the current state of their cancer? a. How do oncology patients evaluate the impact of mental health on their quality of life? 2. What are the perceptions of oncology patients regarding the impact of the COVID-19 pandemic on their mental health? Significance of the Study The examination of this information will allow healthcare workers to better understand how patients experience their mental health after receiving a cancer diagnosis and the additional impact of highly stressful events, like a pandemic, has on their mental health. If a clear connection exists between mental health disorders and disease progression, protocols could be created to care for these disorders more effectively as part of standard oncology care. With MENTAL HEALTH AND CANCER 10 oncology-related medical visits continuing to rise, research on the prevention, detection, and treatment of psychological disorders is pivotal for cancer care (Martinez &Pasha, 2017). Definition of Key Terms Cancer: The condition in which cells divide uncontrollably and abnormally (National Cancer Institute, n.d.). Oncology: The study and treatment of cancer (National Cancer Institute, n.d.). Quality of life: A state of well-being that is comprised of two components: 1) the ability to perform everyday activities which reflect physical, psychological, and social wellbeing and 2) patient satisfaction with levels of functioning and the control of disease and/or treatment-related symptoms (Post, 2014). Mental Health: A individuals overall psychological and emotional condition. Good mental health is a state of well-being in which a person is able to cope with everyday events (National Cancer Institute, n.d.). Literature Review Cancer has been studied in human beings and other animals throughout recorded history (National Cancer Institute, n.d.), however, it has only been more recently that psychological problems associated with cancer have been more closely considered (Gregurek et al., 2010). Current research indicates that one-third to half of oncology patients have a psychiatric comorbidity disorder (Gregurek et al., 2010; Niedzwiedz et al., 2019). The most common conditions diagnosed are depressive disorder, post-traumatic stress disorder, and anxiety disorders (Gregurek et al., 2010). Researchers have concluded that common problems for oncology patients are the expression of emotion and suppression of depressive moods (Gregurek et al., 2010). Mental health disorders may adversely impact treatment and recovery, as well as MENTAL HEALTH AND CANCER 11 the quality of life and survival (Gregurek et al., 2010; Mental Health Foundation, 2021). The COVID-19 pandemic has added additional stressors to these patients contributing to increased anxiety and depression caused by fear of illness and isolation measures (Frey et al., 2020; Irwin, 2020). Mental Health and Cancer With the incidence of cancer predicted to increase by 49% over the next 15 years worldwide (Weir et al., 2021), attention to the psychiatric burden of the disease is critical for cancer care (Caruso & Breitbart, 2020). Cancer patients are experiencing depression and anxiety disorders before, during, and after treatment, influencing the overall burden of the disease (Caruso & Breitbart, 2020; Mental Health Foundation, 2021). Patients tend to delay treatments or miss check-ups when feeling anxious or depressed (The Mental Health Foundation, 2021). It has been found that psychological factors also affect cancer detection, treatment, and survival (Gregurek et al., 2010; Niedzwiedz et al., 2019; Spiegel & Giese-Davis, 2003). The molecular basis for this has been studied, and psychoneuroimmunology mechanisms have been investigated (Gregurek et al., 2010; Sotelo et al., 2014). Researchers have found cytokines to have an impact on the biological and psychological behavior of the disease and may be the basis for symptoms of fatigue, anxiety, depression, and cognitive change (Gregurek et al., 2010; Sotelo et al., 2014). Depression is also linked to a rapid progression of the disease which is thought to be from neurological changes, reduced treatment compliance, and behavioral changes (Gregurek et al., 2010). Studies also suggest that psychological stress such as anxiety and depression is directly linked to poorer recovery of DNA and leads to malignant alteration and cell apoptosis (Gregurek et al., 2010). Though more research needs to be conducted in this area, this data supports the idea that psychological disorders such as anxiety and depression can impact disease progression and MENTAL HEALTH AND CANCER 12 disease state. This is significant since the prevalence of these disorders is high among cancer patients. The prevalence of cancer patients diagnosed with depression ranges from 4% to 49%, with a mean of 20% (Krebber et al., 2014; Nasser et al., 2021; The National Behavior Health Network, 2018; Niedzwiedz et al., 2019; Weir et al., 2021). The prevalence of those diagnosed with anxiety is approximately 45% of cancer patients (Krebber et al., 2014; The National Behavior Health Network, 2018; Niedzwiedz et al., 2019; Weir et al., 2021). Despite this, the mental health of cancer patients is still not being properly addressed before, during, or after treatments (Nasser et al., 2021; Mental Health Foundation, 2021). Only 15.5% of cancer patients diagnosed with anxiety or depression have been prescribed medications or have received treatments to help manage their conditions (Nasser et al., 2021). A variety of factors related to the stage and type of cancer, such as the type of treatments needed and the physical symptoms associated with specific cancers, may uniquely impact ones mental health (Caruso & Breitbart, 2020; Niedzwiedz et al., 2019). Those experiencing symptoms such as incontinence and sexual dysfunction may be at an increased risk of developing depressive symptoms (Niedzwiedz et al., 2019). The type of treatment is also thought to have an impact and previous research suggested that depression rates were the highest during treatments (Niedzwiedz et al., 2019). Treatments including immunotherapy and chemotherapy may induce depression through inflammatory pathways, and some medications used to treat the side effects of chemotherapy can increase the risk of depression by reducing dopaminergic transmissions (Niedzwiedz et al., 2019). In contrast, more recent research found it to be the highest when the patients are in remission (Niedzwiedz et al., 2019) as, once treatment stops, survivors feel a sudden loss of support, leaving them feeling abandoned at a time when support is needed the MENTAL HEALTH AND CANCER 13 most (Mental Health Foundation, 2021). Anxiety was found to be the highest following treatment (27%) and during treatment (26%) (Nasser et al., 2021; Niedzwiedz et al., 2019). Anxiety in cancer patients is thought to be linked to fear of the unknown and fear of recurrence (Loughan et al., 2021; Niedzwiedz et al., 2019; ORourke et al., 2021; Sarkar et al., 2021). Fear of recurrence is one of the most unaddressed issues among cancer survivors (Loughan et al., 2021; Sarkar et al., 2015; Simard et al., 2013). Certain characteristics of the cancer experience can have a detrimental mental impact including feelings of hopelessness and uncertainty (Niedzwiedz et al., 2019), loneliness (Niedzwiedz et al., 2019; Krebber et al., 2014), and fear (Niedzwiedz et al., 2019; Mental Health Foundation, 2021). Cancer Care and Mental Health Cancer care from diagnosis to survivorship should be centered on treating all aspects of the disease (Aubry, 2020). Currently, however, the mental health needs of cancer patients are often not addressed during or after cancer treatment (Mental Health Foundation, 2021). The Mental Health Foundation conducted recent interviews among this patient population and found 49% of those interviewed said they received no support or advice from their healthcare team about managing their mental health, and 66% said they were not informed about the potential mental health problems that could arise once diagnosed (Mental Health Foundation, 2021). In addition, 73% of patients with anxiety and depression were not receiving mental health treatments (Niedzwiedz et al., 2019). Given that untreated mental health disorders may promote cancer progression, it is important to consider if the treatment of such disorders has a positive effect on the overall morbidity and mortality of cancer patients (Martinez and Pasha, 2017). Psycho-oncology is one approach developed approximately twenty years ago that treats the emotional and psychological side of cancer (Gregurek et al., 2010). MENTAL HEALTH AND CANCER 14 The main purpose of psycho-oncology is to explore the multidimensional areas of cancer care by addressing the psychological responses to cancer among patients and the psychological, behavioral, and biological factors that affect cancer occurrence, detection, treatment, and survival (Gregurek et al., 2010). The absence of information and knowledge has been reported to be a leading cause of inadequate psychological care (Adler & Page, 2008). The reasons described by cancer patients for their psychological needs still not being met by their providers include poor communication, symptoms failing to be recognized, and lack of resources provided (Adler & Page, 2008). Many cancer patients have reported being dissatisfied with the information, education, and support received and wish to have resources tailored to their individual needs and clinical diagnosis (Adler & Page, 2008). The psycho-oncology method suggests a multi-disciplinary approach including psychiatrists, social workers, and other mental health resources should be taken when caring for cancer patients (Gregurek et al., 2010). Though this method is an accepted part of care treatment, there have not been remarkable advances in providing high-quality care for the psychological effects of cancer. The integration of the psycho-oncology approach is only occurring in about 43% of cancer patients (Senf et al., 2018). Challenges to the integration of this approach have included the availability of resources, and the support for training clinicians and investigators in psycho-oncology (Holland, 2018). The psycho-oncology workforce is insufficient and hard to access outside of major cities (Vaccaro et al., 2019). The integration of this practice into healthcare practice is strongly influenced by physicians competencies and their commitment to psycho-oncology (Senf et al., 2018). Physicians serve as the link between patients and the needed supported services and serve as the first line of assessment of psychosocial distress (Senf et al., 2018). A primary challenge oncologists face is differentiating between the expected MENTAL HEALTH AND CANCER 15 amount of distress associated with a cancer diagnosis and when distress requires psychiatric intervention (Gregurek et al., 2010). Clinical experience and training in psycho-oncology reveal a major gap between the recommended psychological care and its standard-of-care practice (Holland, 2018; Senf et al., 2018). Further research is needed to determine the effectiveness of psychological interventions; however, current research shows that some form of mental health detection and treatment should also be included in the training of all healthcare professionals to meet the demands of cancer patients (Gregurek et al., 2010; Senf et al., 2018). In addition, offering the appropriate resources and educational opportunities to physicians to encourage a more collaborative, multi-disciplinary approach for cancer patients, may improve the areas where they feel their psychological needs are still being unmet. The Impact of Mental Health on Quality of Life Mental health can also impact the quality of life of cancer patients. Assessing the quality of life among these patients captures the subjective well-being in physical, emotional, functional, and social domains (Ramasubbu et al., 2020). The extent of the patients psychological symptoms has been shown to have an impact on all quality-of-life domains (Ramasubbu et al., 2020), with previous research indicating lower functional, physical, emotional, and social wellbeing among this population (Ramasubbu et al., 2020). The Mental Health Foundation (2021) advocates for psychosocial cancer care to be part of standard cancer treatments to foster a better quality of life. Depression and anxiety may hinder the quality of life and survival among cancer patients as well as treatment and recovery (Caruso & Breitbart, 2020; Gregurek et al., 2010). Anxiety is associated with increased feelings of pain, nausea, problems with cognition, and disturbed sleep all impacting the quality of life in cancer MENTAL HEALTH AND CANCER 16 patients (Gregurek et al., 2010; The Mental Health Foundation, 2021). If not treated properly, anxiety can negatively affect the length of the patients life (Gregurek et al., 2010), and both anxiety and depression have an impact on social and family functioning. The fear of cancer recurrence is also associated with increased emotional distress impacting the quality of life (ORourke et al., 2021; Loughan et al., 2021). Addressing the fear of cancer recurrence is one of the most reported unmet needs in cancer patients (Simard et al., 2013; Sarkar et al., 2015). Patients who experience depression may have a harder time coping with their diagnosis and making decisions about their care (Caruso & Breitbart, 2020; Gregurek et al., 2010; The Mental Health Foundation, 2021). Additionally, depression is associated with worse pain management, poorer treatment compliance, and less desire for long-term treatments (Gregurek et al., 2010). The diagnosis of clinical depression also comes with symptoms such as social withdrawal, anhedonia, feelings of worthlessness, burden and guilt, low self-esteem, and suicidal ideations (Gregurek et al., 2010). The Pandemics Impact on Mental Health The above-listed statistics for depression and anxiety are from studies conducted before the COVID-19 pandemic. The prevalence of depression and anxiety is thought to be even higher among cancer patients since the start of the pandemic (Fiorill & Gorwood, 2021; Weir et al., 2021). The pandemic has had a profound negative impact on mental health with healthcare professionals seeing an increase in depression and anxiety disorders in a large portion of our population (Javed et al., 2020; Fiorill & Gorwood, 2021). Recent studies found several psychological symptoms in quarantined individuals including stress, depression, irritability, insomnia, fear, confusion, and frustration (Fiorill & Gorwood, 2021; Pfefferbaum & North, MENTAL HEALTH AND CANCER 17 2020; Weir et al., 2021). Psychiatrists and other mental health professionals are treating more patients and modifying their practices to support the mental health needs of their patients (Fiorill & Gorwood, 2021). The psychological consequences of quarantine, social distancing, and social isolation can be particularly detrimental to those with increased vulnerability such as individuals with compromised immune systems or preexisting medical conditions (Fiorill & Gorwood, 2021; Pfefferbaum & North, 2020). Cancer patients face increased challenges during the COVID-19 pandemic adhering to isolation guidelines and caring for their psychological well-being (Aubry, 2020; Massicotte et al., 2021). Cancer patients have also experienced a substantial number of stressors related to the pandemic, which have been linked with increased psychological symptoms (Massicotte et al., 2021). Stressors that have been associated with the highest degree of concern are difficulty obtaining medicine and essential items, postponement or cancellation of cancer treatment and medical tests, and changes in cancer care trajectory (Massicotte et al., 2021). The higher number of stressors experienced is significantly associated with greater levels of anxiety, depression, and insomnia (Massicotte et al., 2021). Studies are finding the prevalence of depression and anxiety in cancer patients during the pandemic is reaching considerable levels (Aubry, 2020: Ayubi et al., 2021; Massicotte et al., 2021; Weir et al., 2021). Research Considerations Previous studies have been conducted examining the impact of mental health in cancer patients, but overall, there is a lack of research supporting the idea that psychological disorders can have an impact on disease progression and disease state among cancer patients. Many of the studies that have been conducted represent the most common types of cancer such as breast, lung, and prostate cancer (Niedzwiedz et al., 2019). Additionally, the impact the COVID-19 pandemic has had on the mental health of these patients has not yet been MENTAL HEALTH AND CANCER 18 widely studied (Pfefferbaum & North, 2020). More data also needs to be collected on the potential negative effects of psychological disorders the pandemic has on cancer patients (Pfefferbaum & North, 2020). Conducting a qualitative study will allow cancer patients to describe their personal experiences and the impact they feel the pandemic has had on their mental health and overall disease state. Conclusion Living with cancer presents many obstacles for patients, and the effects of the COVID-19 pandemic compound the already challenging reality of living with cancer (Aubry, 2020). Qualitative research concentrating on mental health in relation to disease progression and quality of life can help find ways to better support their care. Patients may not disclose their psychiatric symptoms due to the stigma surrounding mental health conditions if they perceive a lack of effective treatment options (Niedzwiedz et al., 2019). A survey from the Mental Health Foundation (2021) found that when asked what kind of support would have improved mental well-being during and after cancer treatments, over 60% said counseling, 42% said better access to information, 30% said peer group support and 51% said better communication from providers. Educational programs for oncology healthcare workers may foster better patient interaction allowing them to address the mental health needs of their patients more effectively (Ramasubbu et al., 2020). There are major gaps in cancer care regarding mental health and the needs of these patients are being severely under-addressed. Gathering more research from a patients perspective, specifically during the COVID-19 pandemic, is the first step to better understanding the impact of mental health so cancer patients can receive the best, well-rounded care. MENTAL HEALTH AND CANCER 19 Method Study Design The study used a basic interpretive approach with the aim to capture the participants perceptions of their mental health and how they view the impact mental health has on their disease state. The researcher also sought to capture how oncology patients characterize their mental health during the COVID-19 pandemic. The objective of the basic interpretive design was to encourage participants to share their individual stories and understand the nature of a phenomenon through patients lived experiences (Merriam, 2002). Participants All study participants met the following inclusion criteria to be eligible for study participation: 1. At least 18 years of age. 2. Fluent in English. 3. Diagnosed with cancer of any type and at any stage (1-4) prior to the start of the COVID19 pandemic. 4. Undergoing current cancer treatments (at the time of recruitment). The following were exclusion criteria for the study: 1. Individuals diagnosed with a pre-existing mental health condition including major depressive disorder, anxiety, bipolar disorder, or schizophrenia prior to receiving their cancer diagnosis. 2. Individuals who have experienced a major life-changing event during the COVID-19 pandemic. Life-changing events include separation, divorce, loss of a friend or relative, income loss, or job loss. MENTAL HEALTH AND CANCER 20 3. Individuals receiving treatment at the time of recruitment but did not undergo any form of treatment prior to the COVID-19 pandemic. Procedures Sampling and Recruitment The researcher used the purposeful sampling technique of maximum variation sampling to identify participants for the study. By purposefully selecting the participants for the study, the researcher gained valuable information from a small sample size (Palinkas et al., 2015). Through maximum variation sampling, the researcher aimed to sample a reasonably equal number of participants at different stages of cancer, including stages 1-4, which was intended to provide a varied picture of the phenomenon being studied (Patton, 1990). The researcher originally aimed to conduct a total of 7-10 interviews with the goal to select individuals who would communicate their experiences of their mental health in a reflective manner (Palinkas et al., 2015). This sample size range, using purposeful sampling, is large enough to gain a robust and deep understanding of the participants experience and small enough to demonstrate clear themes without presenting erroneous information (Vasileiou et al., 2018). The researcher obtained Institutional Review Board (IRB) approval for the study from the University of Indianapolis Human Research Protections Program before study procedures were carried out. Recruitment began once IRB approval was obtained. The researcher is a regional representative for the American Cancer Society and started recruitment of participants through the current Relay for Life listserv, a well-known, annual American Cancer Society event to which the researcher manages. This list encompassed cancer patients, survivors, and caregivers. The researcher obtained permission from a Senior Community Manager at the American Cancer Society, to access the list for research purposes. MENTAL HEALTH AND CANCER 21 Per the guidance of the Senior Community Manager, a disclaimer stating the research is not affiliated with American Cancer Society, but for the researchers own educational pursuits was added to all outreach materials. The researcher sent an email to the list detailing the objective of the study, participation requirements, study duration, confidentiality measures, and the inclusion and exclusion criteria for the study (see Appendix A). The researcher did not receive any potential participant replies to the email with this recruitment strategy. Since the researcher was unable to obtain the desired number of participants through emails sent to the listserv, she then used Facebook as a secondary recruitment method. The researcher made a Facebook post on both her personal Facebook page and on the regional Relay for Life Facebook page that she manages after receiving proper approval to do so. The Facebook post included the objective of the study and the inclusion and exclusion information (see Appendix A). The researcher did not receive any potential participant replies with this recruitment strategy. As a third recruitment option, the researcher pursued clinics from a local health system to recruit participants for the study. To do so, the researcher obtained Institutional Review Board (IRB) approval for this new recruitment method from the University of Indianapolis Human Research Protections Program and the local hospitals Human Research Protections program (see Appendix D). Recruitment began with the above recruitment method once IRB approval was obtained at both institutions. After being given temporary access to the radiation clinic schedule, the researcher sent a recruitment email to individuals who met the studys inclusion criteria in which she explained the objective of the confidential study and the inclusion and exclusion criteria. Once a potential MENTAL HEALTH AND CANCER 22 participant replied with their interest, the researcher scheduled a follow-up call with the individual to review the study in detail including the study procedures, study duration, and confidentiality measures (see Appendix A). Eligibility was confirmed during the follow-up call using an eligibility checklist that included all inclusion and exclusion criteria. If the participant was still interested and deemed eligible, a virtual interview was scheduled. The participant was provided with a study information sheet at this time. The study information sheet, which can be found in Appendix B, was emailed along with a confirmation of their scheduled interview time immediately following the interview being scheduled. This ensured ample time to review the study and ask questions before beginning any procedures. Informed Consent The informed consent process was conducted following the Good Clinical Practice (GCP) guidelines of clinical research. GCP is the ethical standard for clinical research design, conduct, monitoring, auditing, recording, and analyses (Vijayananthan & Nawawi, 2008). It also protects the rights, confidentiality, and integrity of trial subjects and data (Vijayananthan & Nawawi, 2008). Verbal informed consent was obtained from all participants before the start of data collection. The informed consent process was carried out by the researcher using the study information sheet and included the study aim, a detailed description of the study procedures, the risk and benefits, methods to protect participant confidentiality, how data will be used, the option for them to withdraw their consent at any time, and the researchers contact information. The researcher was mindful of the sensitive and personal nature of the study, and assured the participants that she would handle their stories with care and respect. She asked the participants to only provide details they felt comfortable sharing. She also reviewed that at any point they may skip a question or end the interview. She thanked them sincerely for their MENTAL HEALTH AND CANCER 23 willingness to share their story and highlighted the value of their participation. All questions and concerns from participants were addressed before verbal informed consent was requested. Additionally, consent to audio record the interview was obtained from each participant prior to starting the recording. Data Collection Data was collected through individual semi-structured interviews with the participants. Interviews were conducted using a semi-structured interview guide (see Appendix C) created by the researcher to capture the participants experiences with their mental health and quality of life in relation to their cancer diagnosis. Interviews were conducted virtually. The interviews were audio recorded using a digital voice recorder. Once the recording began, the researcher provided a standard introduction reviewing the interview structure and type of interview questions. The interview began with an open-ended question asking the participants to share their experience of receiving their cancer diagnosis. Participants shared when and how they were diagnosed, with what type and stage of cancer they were diagnosed, and an in-depth depiction recounting the events leading up to their diagnosis. The researcher asked prompts and follow-up questions and transitioned into asking about the impact the participants felt their diagnosis had on their mental health. The interview was structured with a flow of questions from general to specific, and though an interview guide with pre-established questions was used, it was important for the researcher to make the interview feel like a conversation. During the interviews, the researcher noted details such as vocal intonation and emphasis by the participants. The interviews ended when the pre-determined questions were exhausted, and the participants noted they did not have any further information to share. Interviews averaged 37-50 minutes in length. MENTAL HEALTH AND CANCER 24 Reflexivity techniques such as journaling, internal reflection, and memoing allowed the researcher to be self-aware of their personal bias and continually reflect upon their relationship with the research. Journaling occurred both before conducting the interview and after the interview was conducted with each participant. Memoing allowed for the articulation of the researcher's thoughts and personal study assumptions to be recorded and reflected upon during both the data collection and analysis process (Stuckey, 2015). Memoing also allowed the researcher to note how she interpreted patterns and themes throughout the study process and helped them recognize if their interpretation of the data changed at any point throughout data collection (Stuckey, 2015). Data Management and Analysis Audio recordings of the interviews were transcribed verbatim by the researcher using Temi, a software transcription program. The researcher used the exact words and expressions of the participant to honor how their personal experiences were shared. All data, including the audio recordings, were stored securely on a password-protected computer. The list of eligible participants provided by the local hospital system was stored on REDcap, a secure web application specifically geared toward supporting research. Only authorized researchers and personnel working on the study had access to study documents. Participants were assigned a study ID in lieu of their names, and all other personally identifiable information was omitted from the study documents. If a paper is published from the findings, the recordings will be kept for a minimum of three years and properly destroyed when no longer needed. The interview transcripts were read multiple times to allow the researcher to be immersed in the data. The researcher then coded the transcripts. In doing so, the researcher noted keywords, phrases, and segments presented in each interview that was relevant to the research MENTAL HEALTH AND CANCER 25 question and assigned each of them an associated label or code. Once the transcriptions were coded, a codebook was developed to organize and categorize related data (Stuckey, 2015). The researcher created the codebook with codes that reflected common themes from the transcripts. The codebook also contained code definitions, locations within the transcript, and representative participant quotations. A secondary researcher affiliated with the study and with experiences in qualitative research was involved in the coding process. The secondary researcher provided guidance on the coding process throughout. The method of cross-checking was used to support the dependability of the results (Henderson & Rheault, 2004). Specifically, the two researchers independently coded the first four transcripts and then came together to compare their codes. Once the primary and secondary researchers agreed on the common themes from the coded transcripts, a theme table (see Table 2) and concept map (see Figure 1) were created to further develop the themes associated with the study and help the researcher better understand the relationship between the themes. The concept map and theme table were used as a schematic device to help the researcher focus on the meaning and connections of the data (Daley, 2004). The map was created with the more inclusive concepts at the top and connected through linking words of other concepts (Daley, 2004). The theme table was categorized by common themes seen in the participant interviews, and direct quotations from the interview were included to support the theme. Each participant had the opportunity to engage in member checking to minimize study bias. Specifically, a detailed summary of the themes developed by the researcher was emailed to each of the participants for review. Each was asked to confirm or provide clarification about the accuracy of the researchers interpretations (Candela, 2019). Accordingly, the process helped ensure that all data collected correctly portrayed the voices of the participants (Candela, 2019). MENTAL HEALTH AND CANCER 26 Rigor/Trustworthiness The researcher took necessary steps to ensure the trustworthiness of the data, focusing on four areas during both data collection and analysis: credibility, confirmability, transferability, and dependability (Henderson & Rheault, 2004). Methods to ensure the credibility of the data were the use of in-depth interviews with open-ended questions, audio recordings of the data, the creation of verbatim transcripts, the use of a secondary coder, and the participant member checking the themes. The above methods allowed the researcher to develop an accurate representation of the participants experiences and strengthen the confidence in the truth of the data. Methods to support confirmability reduced the bias in the research (Henderson & Rheault, 2004). Using methods such as field notes to make detailed observations, journaling, and memoing throughout the process helped ensure the data reflected the participants' voices and not the researchers' bias. Triangulation, using multiple researchers to evaluate the collected data, was used to help ensure dependability. Including a detailed and sequential description of all the study procedures and methods also promoted the dependability of the data by allowing the study to be repeated by another researcher (Henderson & Rheault, 2004). Transferability reflects the extent to which the results could be applied to a similar group of participants in a comparable context (Henderson & Rheault, 2004). This was accomplished by collecting ample demographics, background information, and contextual details about the participants and their experiences. Results Seven participants were interviewed for this study: six women and one man. Ages ranged from 40 to 79 years old. Interviews with the participants averaged 39 minutes long, and all were MENTAL HEALTH AND CANCER 27 conducted remotely. Six interviews were conducted via phone, and one was conducted via Zoom video conferencing. The types of cancer at diagnosis included two participants with breast cancer, three participants with leukemia, and two participants with brain cancer. Of the participants, one was diagnosed with breast cancer for their first diagnosis and received a separate diagnosis of terminal brain cancer three years later. The stages of cancer at the time of diagnosis ranged from stage I-III. The participants were initially diagnosed before the start of the COVID-19 pandemic and undergoing current treatments. Treatment plans have included either chemotherapy, radiation, surgical removal, or all three treatment types for their cancer. The participants with leukemia all had to undergo bone marrow transplants in addition to their cancer treatments and two participants with leukemia had to have an in-patient hospital stay for several weeks for their treatments. All participants who received chemotherapy for their treatments received IV chemotherapy during their treatment course, though some have switched over to pill chemotherapy currently that they can take daily at home. The full demographics of the participants can be found in Table 1. Six major themes were consistent with each interview and included: emotional overwhelm, fear of the unknown, learning to adapt to a new normal, maintaining a positive outlook, the impact of the COVID-19 pandemic, and the importance of mental health being addressed as part of their standard of care. Participants had strikingly parallel experiences with receiving their cancer diagnosis, how they viewed their diagnosis impacted their mental health, and the perceived effect their diagnosis had on their daily lives. Participants also shared similar experiences about the impact COVID-19 MENTAL HEALTH AND CANCER 28 had on their daily lives and their treatments. However, the participants shared different experiences surrounding the extent to which they felt their mental health was properly addressed by their providers and whether they were given satisfactory resources to address their mental health. Five of the participants stated the mental health aspect was unaddressed or underaddressed, including being given no resources, while two participants stated they felt it was sufficiently addressed and that they were given the resources they needed. Emotional Overwhelm For all participants, treatments started immediately after diagnosis, resulting in emotional overwhelm. The need for immediate treatment left no time to gather additional information. The participants described the experience as being given a lot of information in a very short amount of time and not having the time to stop and digest it all. So yeah, it's, in the beginning, it is very much a rollercoaster. I don't know how anyone can be prepared for that. And I remember in the earlier weeks waking up some days being like, is this true? Like, is this really happening to me? Like, am I, I really have to say I have cancer. Like, it was very hard in the beginning to say the cancer word. (Participant 001) Later in the interview, participant 001 noted, Everyone was making sure I was taking the time to you know, heal and breathe basically. Four participants shared in detail their experience of receiving their diagnosis and described the impact of the immediacy of their treatments. Participant 002 stated My doctor called at 6 pm on a Friday and said You have leukemia. And I have reserved a bed for you down at [*** Cancer Center] and so you have to go down there now.. Participant 005 shared a similar experience stating: MENTAL HEALTH AND CANCER 29 I had gone into our family doctor, and he called me at home, and he said, I need you to get to see this specialist on that same day. I want you there in an hour. And we didn't even know where. And that's one thing he said, you do not drive. Have your spouse take you. Participant 005 also shared how important the urgency of their care was stating: When I was first diagnosed, I had to go into the hospital and have transfusions because I was very, very low on, uh, blood. My bone marrow had really, uh, quit producing blood. So, they told us at the time that had I not come in, I probably would've passed in a couple of weeks. Participant 003 explained they were urged by friends after getting sick at work to go to the ER. This participant thought they just had the flu. In the ER, after a CT scan and MRI, they found a tumor the size of an egg. After that, things happened quickly. I was in surgery that evening to remove the tumor then started radiation and chemo treatments right away. It was all so quick (Participant 003). Participant 001 went in for a routine mammogram and quickly got the call of their results. They shared they told me, things would move quickly from there. And they did. We got back from vacation, I think on a Saturday, Monday I had my port placed, and Thursday I started my first round of chemo. The theme of emotional overwhelm arises at many points during all the interviews when each participant mentions the word shocked or overwhelmed in some form. Participant 002 stated, So they started Monday, they did a bone marrow biopsy. They explained what was going on because honestly, I was just in shock. And participant 003 expressed The whole process MENTAL HEALTH AND CANCER 30 was very overwhelming. Which is why the mental health aspect should be addressed periodically throughout the process. Participants 005 and 007 recalled feeling as if they were just given a death sentence and shared their experiences surrounding their initial diagnosis. Participant 005 stated, I think because you know when you first hear leukemia, you think it's a death sentence. You know. And so, at first, we were both very scared. 005 continued to share: Youre not expecting to hear cancer. Youre not expecting to hear anything like that. Like I said, we got the call to go to the specialist and this is all and the same afternoon. I didnt even know what was going on. They sent me down to the hospital to get a blood transfusion. So, you know, that kind of catches you off guard. Participant 007 stated So I received my first cancer diagnosis in 2007. I was 27, stage three breast cancer. It was traumatic, um, , it just felt like a death sentence and, um, psychologically it wrecks you, I must say. Participant 007 was diagnosed for a second time three years later and recalls hearing cancer again was just as traumatic as the first time. They state then came my brain tumor in 2010, not a metastasis. So, it was a whole reopening of that trauma, like going through it a second timeUm, and it's very traumatic. It causes a form of like PTSD in essence, and there's very little help for that. Emotional overwhelm wasnt just present at the time of initial diagnosis but during times of remission and relapse as well. In an out of remission does try, you know, your mental health, you're like, oh my gosh, seriously. Yeah. I totally thought I was done with this (Participant MENTAL HEALTH AND CANCER 31 002). I try to find that ability to think that things are going to go well. But then I got rediagnosed again and you're like, oh my gosh, are you kidding me? Seriously (Participant 002). The physical aspect that came with the diagnosis, both physical appearance and physical fatigue also played a role in feeling overwhelmed. Participant 004 shared I had long hair, and my hair was like thick, real thick. But that was my thing. I didn't wanna lose my hair. That, that's where I had the emotional time dealing with, was mostly my hair. Treatment this time around has been much more difficult because it's been longer and more physically fatiguing. I believe that's been more mentally trying than anything (Participant 004). Fear of the Unknown All seven participants recounted how their diagnosis led them to have a fear of not knowing what their future held. Feelings of anxiety surrounding family planning were shared by many of the participants. Participant 003 stated: Just not knowing what is going to happen. What is going to happen with my kids, my [spouse]? The increased anxiety prompted us to make changes and get affairs such as the will, estate planning, and DNR in place. There was just so much to consider, and it was all happening so quickly. Participant 003 stated again later in the interview No matter how was feeling, I just knew I had to keep going for my children. Participant 001 had similar thoughts stating, So in the beginning, of course being a [parent] of three young kids, eleven, seven, and three, my first thing was what about my boys?. During the time of remission, the length of time between each appointment was also a cause for anxiety. The National Cancer Institute talks about one of the hardest things after MENTAL HEALTH AND CANCER 32 treatment is not knowing what happens next. Once they got me in remission, I went to the oncologist every three months and then six months and then, um, nine months to keep checking my numbers (Participant 005). All participants shared similar experiences of feeling stuck in emotional limbo living from one appointment to the next, never feeling completely confident that theyre cancer free. I don't know if it ever goes away like the thought never goes away that at the next appointment, they can tell me I have a week to live. So that's a big one to handle, you know? Um, it can just change at any time. So, you always have to be prepared for that. And that's where you kind of have to manipulate your own mind, you know? (Participant 007) Participant 007 continued to share: My mental health is a little better when they give you a good diagnosis, like stable or remission, it helps. And then, the time comes like for your next appointment and then it's like a cycle. Its kind of like chemo where you're getting it, you feel horrible and then you start to feel better and then you have to get it again. It's kind of like that with the appointments, you start to feel better, and you almost forget about it and then it's time again and it just restarts that madness. Like the mental madness just makes you sick, emotionally sick. Participant 003 stated, Even during the time of remission, you always have that worry or thought in the back of your mind of not knowing if you will come out of remission again. It is something you think about every day. MENTAL HEALTH AND CANCER 33 Adapting to a New Normal All seven participants described the first few months after diagnosis as a time of significant change. This time is often referred to as adjusting to a new normal (National Cancer Institute, n.d). Cancer patients often report having many different emotions during this. (National Cancer Institute, n.d). The physical limitations participants felt because of treatments greatly impacted their time learning to adjust. So, with chemo, especially, my brain was there, but my body was not. So that was very hard to realize, like, I couldn't do what I was doing, you know, the [parent] thing and it's hard to tell your kids, I'm sorry, I can't do that. Like, [parent's] just tired, you know? And in the beginning, it was hard for them to process that, but over time, I always say it's our new normal. (Participant 001) Participant 002 shared what it was like starting treatments quickly: It, it makes you feel really bad. I thought I felt bad before then, you know, , I felt really bad. And then I went home with the caveat that I could wear a mask the entire time I was home and not to absolutely not go anywhere. Participant 002 later stated how the adjustment at home was harder than they anticipated not being able to do as much as normal, sharing Cause you know, I do not have all the energy that I used to have. Similarly, participant 005 expressed that the hardest part mentally of diagnosis is not being able to do what they used to do physically. I wear out so easily. Ill take a shower. And had to get me a chair to sit down, cause I, I couldn't take it without being outta breath. So, you know, that's the main thing, that I noticed. I don't feel bad. Other, than I just wear out. So easy. Thats the hardest part of MENTAL HEALTH AND CANCER 34 this all. I just cant do what I used to do. I cant do many things like even cut the grass because of how quickly I wear out so easily. Participant 007 underwent major brain surgery after their brain cancer diagnosis. Since surgery, daily life looks much different and tasks that used to seem simple were now a challenge. Although these physical adaptations have been an adjustment, over time they have just learned to adjust. It is the mental aspect that remains to be the battle. I only received back 45% usage of my left side. And like, something as simple as going to the grocery store, I just melt down. Just little things. Um, there is a huge amount of impact. Um, like just walking into a grocery store, making it twice as a challenge. It's definitely the mental, the physical part I've worked through, and I've adjusted. I think I'll forever struggle with the mental thing because you know, what they've taken away won't come back. (Participant 007). Having feelings of navigating new family dynamics was also a topic shared by many of the participants. Having to learn to take a step back from being the caregiver of the family to the one being taken care of was often discussed. I'm a very type A personality and most people would tell you I'm very much the caregiver of our family. So it was, and still is very hard for me to kind of step back and relinquish that (Participant 001). Participant 001 continued to share Like, I'm the fixer, like yeah, I'm the one that's supposed to take care of everything, not people taking care of me. Career adjustments were also described as a main adjustment to daily living. And it was hard because without the money coming in from my business, we would've had to declare bankruptcy. I couldnt teach anymore during my treatments, so I had to MENTAL HEALTH AND CANCER 35 take a step back and hired a teacher to teach for me. That was very hard (Participant 002). It's just you get on Facebook, and you see everybody's got a life. I feel like I'm in a place where I'm not able to live, the way I should be living at my age. And as I said, it's like everybody's getting out, working, and doing everything. And I'm not a part of that. I'm not, I feel like I'm not growing as a person because I can't do that anymore. As I said for me, that's been the hardest battle. (Participant 004) I was in sales and marketing for 16 years prior. Now I just kind of do work with dogs, just work at my own pace and work for myself. It works. It was humbling at first but it's good. I'm just embracing the new normal. (Participant 007) Maintaining a Positive Outlook Another theme all seven participants expressed was the importance of maintaining a positive outlook. All shared that this was the most critical factor in maintaining their mental health, stating during their interviews that it is all about their attitude. Of all the themes, this was the one most often discussed throughout the interviews. The National Cancer Institute says those diagnosed with cancer often say that life has new meaning or that they look at things differently. All participants shared the same beautiful outlook of positivity and made the conscious choice of finding the good every single day. I've definitely had my woe-is-me moments, but in the very, very beginning of this journey, everyone said it's all about your attitude. And I've tried to go in with the most positive attitude I can. Like I said, I definitely have my days, but I kind of just went with the, it is what it is, this is what we have to do. I have three boys that still need their MENTAL HEALTH AND CANCER 36 [parent]. I still have sisters and nieces and nephews and my parents and grandparents, and so, you know, I'm gonna fight. (Participant 001) Participant 001 continued to share: I just wanted to be a positive light and help people, which is what I've always done. So, whether it be in the darkest of times or the brightest of times, that was kind of my goal. And since my diagnosis, I've actually had other friends that have been diagnosed with some pretty serious other cancers, but they all refer to it as we're gonna have an [001] attitude So we're all on a journey, whether it's the good one, a bad one, somewhere in between. But like I said, I'm just trying to make the best of the situation. (Participant 001) Participant 002 expressed: So, this is how I feel. I am on a bridge above like this gully and the gully goes way, way down. And at the bottom of the gully is like all the, the, the, the yuck of self-pity of oh my gosh, why did this happen to me? Ugh. Life is such. You know? I mean, it's all there. Its part of me now, but I am going to stay up on the bridge. That's, that's my goal in life. And every person has to decide how they're gonna handle it. You've gotta crawl up, you've gotta crawl up out the hole and find it. But every single person has to do it. And I'm sure everybody does it differently. I have to do it. It's almost daily that I have to listen to something uplifting. Make that choice. (Participant 002) Participant 002 also shared, And it is hard sometimes to crawl up and decide what kind of day you're gonna have. I just feel very strongly that I can decide what I'm gonna do. I can decide how I'm going to be. MENTAL HEALTH AND CANCER 37 Participant 002 also expressed how times of treatment were much harder on their mental health and the importance of working harder on their mental health using faith and positivity during this time. So, I had a, I don't even know what to call it, an area in my hospital room where I had meaningful sayings to me. I had bible verses up there and different things that could lift me up. I have always been a person who listens to things that bring me up. So, I have to work harder at my mental health during active treatment periods. I have to lift myself up. (Participant 002) Participant 003 voiced, I just try to stay positive and live each day with a positive outlook. Participant 004, Because you can live life however you want. Participant 005, Cause I always just, I never acted like anything was wrong. Like I say, whatever's gonna happen. No sense in worrying about it. It just makes you miserable if you do and thats not going to help. I can tell this one thing; you cant tell people how to feel about it but the worst thing you can do is worry about it (Participant 005). Participant 006 also expressed their feelings surrounding having faith in the journey. I have a strong faith and I've suffered other things in my life, so I kind of am like, okay, you can cry for a minute, and I'll pull up your, boots and get going. Participant 007 pointed out that despite all they have been through, they have learned to find beauty in their journey. It's like you have your moments. I'm a pretty positive person. I know this journey has built my faith, like Christian faith. But I still think my mental health is weak at times, I try and inspire others and help others through it. However, there's beauty in it. I kind of refer to cancer as a blessing at the same time because have not gone through what I've gone through, I wouldn't appreciate life the way MENTAL HEALTH AND CANCER 38 I do, and I want to see things the way I do, and it overall made me a better human. (Participant 007) The COVID-19 Pandemic The participants also shared their perceptions of the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. When discussing the COVID-19 pandemic, the participants all shared a similar experience. The participants all described the pandemic as not having an impact on their treatment plans. They also described taking some precautionary measures before COVID-19 due to being immunocompromised. However, concerns about being more vulnerable to COVID-19 and increasing these precautions were expressed, I was, I was very, very cautious (Participant 004). I didn't go out unless I had to go somewhere (Participant 004). We were careful because we knew that my immune system was compromised. So, you know, we were extra careful. We masked up every time we went out. We didn't do a lot of socializing and stuff like that. Our lives were very slim at that time (Participant 005). Participant 007 recalled, It was very isolating, and it was rough, like appointments. You couldn't take anyone with you. Though being an extremely difficult time, participant 007 also expressed some feelings of ease during that time. The pandemic was a tough time, but it did also help me in some aspects. I didn't have to go anywhere and make choices. So, that was better and there was no pressure, to perform like a normal human where I can't always. It definitely also made me more aware of it, so, I guess there was somewhat of a benefit to it too, right? Like it made you, it really made you think about what you're doing and as far as like washing your hands or like where you go and what you're touching. (Participant 007) MENTAL HEALTH AND CANCER 39 Two other participants described similar feelings surrounding the benefit the COVID-19 pandemic brought in the sense of making other individuals around them more aware of the importance of hand washing and wearing masks in public settings as a common practice. Though the COVID-19 pandemic was a tough and isolating time, now experiencing treatments in a post-pandemic world they feel a bit safer with being immunocompromised than before the COVID-19 pandemic. Mental Health Not Being Addressed in Standard of Care Participants also shared their views on whether they felt their mental health was being addressed adequately by their healthcare providers. Overall, the majority of the participants acknowledged that their mental health was not adequately addressed as part of the standard of care at any point including at the time of diagnosis, treatments, or when entering remission. The lack of mental health resources was also described by many of the participants. I dont recall mental health ever being addressed by my providers. Medical professionals never did any type of screening or asked if I needed to talk. I think it would be helpful for them to have periodic check-ins throughout treatments to ask, how are you doing? Whats going on? Or say here are some resources for you. (Participant 003) Similarly, participant 002 stated, I think there could be more of having mental checks of how you are doing and do you need more support. Participant 007 stressed the importance of mental health when battling and the impact they felt it had on their disease state. My doctors never asked, how are you really doing? And it's important. I think if your mental health is good, I notice from my journey, when I maintain positive mental health, you fight through it much easier and um, and when you're mentally wrecked it's so much MENTAL HEALTH AND CANCER 40 harder. Definitely, more outreach with healthcare professionals is needed, its crucial. Thats kind of a bucket list item of mine. I'd love to create more of an outreach where people know where to talk to people that are going on the same journey. Make it more accessible and like, you know exactly where to go, you know. (Participant 007) Similar feelings surrounding the amount of mental health resources were shared by five of seven of the participants. Two participants recounted similar experiences of getting a binder of information, but neither of them recalled it having information on their mental health. Before I had my transplant, I got like a three-ring binder on kind of what to expect. I've never looked at that since I probably should have. But nobody ever said, oh, well, you know, that's on page 10 of the three-ring binder you got. And there wasnt anything there on mental health, I don't remember anything. (Participant 002) And as far as the sending around someone who, who says, hey, how are you doing? Have you thought about listening to this? Here are some resources for you to get, I dont remember any of that. All of my stuff I just found on my own. (Participant 002) Similarly, Participant 003 shared I was given a Welcome to Oncology Packet but honestly dont know if there were any resources in there. They were never like reviewed with us or it was never said here are some resources for you. Participants 007 and 001 commented on the need for more resources for patients. Participant 007 stressed: I feel like there needs to be more resources for people that have gone through this. To help, it wrecks you, you know? So, since my first diagnosis, like, I haven't slept all night since probably 2007. I was put on disability after my brain surgery and that's very MENTAL HEALTH AND CANCER 41 humbling because I'm young, I'm just 43, and, um, I don't know, it's a very humbling and um, yeah, very psychologically damaging. For breast cancer, I was offered like the cancer services of [***], but yet it's still kind of limited, you know? I don't think there's enough (Participant 002). It is needed to have support. And just the cancer kind of community (Participant 001). Participant 004 shared that they speak with a mental health therapist but was someone they located on their own and has been a significant resource for them. I've talked to her a while though; she was not given to me as a resource from my cancer. I've been talking to her for a few years now since around the start of the pandemic. The participants described having great trust in their care team which has brought them some ease through the process. The participants shared similar views: I just have a lot of faith in my doctors. And I know a lot of people don't have that, but I, I trust them. They've been trained. and you know, you're getting treated by the best out there (Participant 004). Our doctor, we like her a lot. Awful lot. We really trust her and know we are in good hands and that makes all the difference going through this process (Participant 005). I have a really good rapport. My doctor's been by my side the whole journey. He's pretty great (Participant 007). Of the seven participants, two participants described feeling fully supported by their healthcare providers. I know that they immediately offered health resources to me. They probably had a mental health counselor in the meeting, so I knew something was kind of weird that more than one person was talking to me, and they immediately asked how I felt and did I want free counseling. (Participant 006) MENTAL HEALTH AND CANCER 42 I know I went back to a subsequent appointment, and they said, how do you feel about your cancer diagnosis (Participant 006). Participant 005 remarked My doctors were on top of it and offered the resources we needed. I know if we were to need more, I feel confident on where to go to receive them (Participant 005). Discussion The present study was conducted to better understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The research also aimed to understand the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. Mental health illnesses such as anxiety are common in cancer patients, but often neglected, influencing quality of life, adherence to treatment, cancer survival, and treatment costs (Duggan, 2021). Previous studies have shown that mental health issues are minimized in the cancer care field (Duggan, 2021). Healthcare professionals often misidentify these mental health symptoms as normal emotional responses to a cancer diagnosis, and many patients are reporting not receiving the treatment they need (Duggan, 2021). The views and experiences the participants shared in the current study regarding their mental health support the previous research. The study reveals that participants perceived that a cancer diagnosis had a significant impact on their mental health and quality of life. All participants in this study described both the physical and emotional burden that came with a diagnosis. Participants in this study reported feeling anxious, frustrated, overwhelmed, and fearful after receiving a diagnosis and these feelings were also present during times of remission. After treatments, feelings of uncertainty about how to move forward are common, leaving feelings of anxiousness about the future (National Cancer Institute, n.d). One participant received two separate diagnoses and described their experience as very MENTAL HEALTH AND CANCER 43 traumatic, causing a form of PTSD. Five of the seven participants felt as if their mental health concerns were overlooked and not addressed adequately, and they were not receiving the support or treatment they needed. Many people with cancer feel a lack of certainty about what the future holds (National Cancer Institute, n.d). After a cancer diagnosis, many feel that their life is less secure than it once was which can lead to feelings of anxiousness, anger, and sadness (National Cancer Institute, n.d). The research study upheld this as seven participants also reported feeling uncertain and fearful about their future and expressed feelings of helplessness. This led to anxiety surrounding financial planning, estate planning, healthcare and treatment planning, and planning for the care of children and families. The urgency of treatment played a major role in the mental health of the patients. All seven participants also described being shocked and overwhelmed as their lives quickly changed. They described their entire journey as being on an emotional rollercoaster and even during times of remission they felt they were stuck in emotional limbo not knowing what each new day would bring, anxiously waiting for their next appointment. Though all the participants reported being pleased with the care they were receiving regarding treating their cancer, several participants expressed there was a major gap in care when it came to getting their mental health needs addressed throughout the process. The participants stressed the importance of maintaining their mental health when battling and the impact they felt it had on their disease state. The type of cancer and stage at which the cancer was diagnosed did not seem to make a significant difference as all seven participants reported a decline in mental health. There was a connection to the length, time, and type of treatment as longer chemotherapy treatment periods lead to a greater physical toll which was linked to a higher emotional burden on the participants. MENTAL HEALTH AND CANCER 44 These findings were consistent with previous studies showing chemotherapy, as compared to other treatments, to be associated with a higher anxiety level (Lim et al., 2011). The participants who underwent surgery also reported a higher level of anxiety and frustration as they experienced more permanent and significant physical limitations. Being capable of normal daily activities is a standard determinant when evaluating the quality of life in cancer patients (Shahidi et al., 2014). Measures of daily activities have even been suggested as potential predictors of treatment outcomes in cancer patients (Shahidi et al., 2014). Previous research examining the impact of a cancer diagnosis on daily living has shown that common symptoms such as fatigue can impair the physical functioning and quality of life of patients. For example, a study conducted by Shahidi et al. found more than 40 percent of the patients reported changes to their daily living after the diagnosis, and more than half of the participants who were employed at the time of diagnosis experienced changes in the amount or type of their paid work after being diagnosed with cancer. The experiences reported by the participants were consistent with previous studies supporting the need for care and interventions to help patients maintain the daily activities they need and like (National Cancer Institute, n.d; Shahidi et al., 2014). In addition to the physical limitations of treatment, the participants in this study expressed there are many different factors contributing to their mental health following their diagnosis. These included changes in physical appearance, illness, fatigue, family planning and support, and new challenges they face regarding their career and family responsibilities. Several participants described feelings of frustration as they were not able to perform all the daily tasks, they were able to once do before being diagnosed. Additionally, many patients reported feeling guilty or ashamed about not being able to fulfill their family responsibilities. This was especially present for the participants with young MENTAL HEALTH AND CANCER 45 children at home as they felt the family dynamic significantly changed. Many participants described having a difficult time taking a step back as the caregiver of the family and being the one taken care of. Several of the participants also underwent major career changes as a result of their diagnosis. They reported having to take time off work or go on disability due to the physical and emotional toll of cancer treatment. This affected their livelihood and way of living, adding additional anxiety and stress. The feelings of frustration and anxiety also emerged while completing daily tasks around the home. All seven participants reported not being able to complete physical tasks such as cleaning or completing outside chores due to not having enough strength and energy. This shift in daily life was often referred to as a new normal and it took an emotional and physical toll on the participants as they were learning to adapt to all these changes. Further studies are needed to better understand the nature of such interventions for cancer patients, but the perceptions shared by the participants display the critical need for more education, recognition, and evaluation of the physical and psychological problems caused by cancer and its treatment that impact normal functioning. Patients who lack a support system may be more vulnerable to mental health challenges (Harandi & Nayeri, 2017). Poor social support has been linked to depression and loneliness (Harandi & Nayeri, 2017). Social support refers to the psychological and material resources provided by a social network to help individuals cope with stress. Such social support may come in different forms including helping a patient with daily tasks, giving advice, or providing care and empathy (Harandi & Nayeri, 2017). Six of the seven participants described having strong support systems, while one reported having no one to turn to for support. All six describe it as it takes a village and having the support of family and friends has made a difference in anxiety and depression levels. Participant 006 stated, Let your inner circle and your middle circle know MENTAL HEALTH AND CANCER 46 and let them, let them take part in your healing and it's good for all of you. The one participant who reported not having a support system reported extreme feelings of loneliness which contributed to their declining mental health. Findings from studies on the impact the COVID-19 pandemic has had on cancer patients suggest that mental health during the pandemic in the cancer population may be impacted by social isolation as well as stress regarding accessing cancer treatments (Amaniera et al., 2021). The participants discussed the COVID-19 pandemic and their views regarding the pandemics impact on their mental health and disease state. All seven participants reported the pandemic did not impact their treatment plans and described taking some precautionary measures before COVID-19 due to being immunocompromised. However, concerns about being more vulnerable to COVID-19 and increasing these precautions were common themes expressed by the participants. Overall, the pandemic was referred to as a tough and more isolating time but was not described as having a significant impact on the participants mental health outside of the ever-present emotional effects they were feeling from their diagnosis. The biggest change many of the participants had to adapt to was going to their treatments alone due to restrictions, but still felt supported by their family and friends in other ways. Three participants described similar feelings about the COVID-19 pandemic as being in some ways beneficial as it made other individuals around them more aware of the importance of hand washing and wearing masks in public settings as a common practice. One participant described it as bringing a sense of ease as they didnt feel as much pressure to go outside the home and perform the day-to-day tasks that they are no longer able to perform. The participants also expressed a common theme of feeling safer in a post-pandemic world while being immunocompromised. Overall, the participants in the current study did not perceive the COVID-19 pandemic as having a significant impact on MENTAL HEALTH AND CANCER 47 their mental health in addition to the psychological symptoms they were already experiencing from treatments. Awareness by healthcare providers and an established framework to identify the need for support or resources regarding the pandemic should still be an essential element of cancer care. The findings in this study also suggest that the healthcare system can play a critical role in a patients mental health. Though some participants felt that mental health was addressed by their providers, overall, this seems to be a gap in the standard of care for oncology patients. Five of the seven participants reported their mental health not being addressed or being underaddressed immediately following diagnosis, during treatments, and during times of remission. All five participants stated they do not recall being asked about their mental health or being provided with any resources regarding mental health. Two participants recalled getting a Welcome to Oncology folder immediately following diagnosis, but do not believe there were any mental resources provided in the folder, and if so, they were never specifically reviewed. Asking patients how they have been feeling emotionally or how they have been coping with the diagnosis and treatment can be a meaningful way to start a conversation (Duggan, 2021). When a provider lets a patient know that they are available to support them can help the patient feel safe enough to open up about any issues that theyve been experiencing (Duggan, 2021). Healthcare providers should be aware of the challenges that cancer patients face and provide adequate support and resources to address their mental health needs. The findings in this study are revealing in this way, as emotional distress and mental health disorders can have profound impacts on patients, beyond their emotional and mental well-being (Duggan, 2021). Research has shown that cancer patients with mental health symptoms have poorer health outcomes. New-onset mental health diagnosis after cancer diagnosis is associated with an MENTAL HEALTH AND CANCER 48 increased risk of mortality (Benton et al., 2022) which highlights the importance of early recognition and treatment of mental health symptoms. Limitations The study has some limitations that need to be acknowledged. The methods of recruitment posed some limitations for the study. The initial plan for recruitment was to use a listserv from the American Cancer Society to include different perspectives from different regions, medical centers, genders, and different types of cancer. Since this first recruitment method was not successful in generating interested participants, the participants were recruited from the same geographic area which may cause the transferability of the results to only be relevant for individuals from a similar set of circumstances. Some participants were also treated within the same medical system, though this did not seem to make a difference in the level of care provided or with their mental health being addressed by their healthcare providers. Additionally, only three types of cancer were represented in the study (breast, leukemia, and brain), all but one of the participants in the study were women, and all were White. The limited variation among the participants made it difficult to conclude if all cancer types share the same experiences and if it limited the applicability of the findings to individuals from all genders and racial/ethnic backgrounds. Additionally, we focused on the experiences of cancer patients and did not explore the perspectives of their caregivers or healthcare providers. Limiting the diversity of experiences may overlook valuable insights from other individuals and how their experiences may intersect. Contribution to the Profession This research study aimed to uncover the challenges that patients face and the coping mechanisms they use to manage the emotional burden of cancer and be able to provide real- MENTAL HEALTH AND CANCER 49 world solutions for cancer patients. The study results demonstrated that the participants felt a significant psychological impact from their cancer diagnoses, which supports the clear need for an integrated care approach for cancer patients. The theme of positivity was shared by all seven participants reporting that the key to fighting this battle is all about ones attitude. The participants shared that having a positive outlook was the most critical factor in maintaining their mental health. For participants to remain positive throughout the process, it is important they feel supported and given the proper resources they need. Addressing their mental health needs should be part of their standard of care when starting as a new oncology patient. Since oncology physicians serve as the first line of assessment, they need to be trained to assess and address mental health concerns to provide more comprehensive care and support to their patients. Given that mental health can have an impact on patient outcomes (Gregurek et al., 2010), training oncology physicians can enable early identification and intervention to help prevent the worsening of mental health symptoms and improve overall patient well-being. The current study revealed the complexity of the patients experience and the lack of standard support felt by participants for both their emotional well-being alongside their physical health. As such, being able to recognize the interconnectedness of physical and mental health is essential to providing this care. Training clinicians can involve several approaches including educational workshops and seminars, continuing education programs, and providing oncology physicians with resources and guidelines for standard operating procedures for evaluating and addressing mental health symptoms in cancer patients. The Provider Education for Mental Health Care of Cancer Survivors (EMHCCS) Training offers a notable example of an effective training program. The is a free, web-based, interactive training program created to support health care MENTAL HEALTH AND CANCER 50 providers, improve knowledge about cancer patients mental health care, and promote recommended distress screening (Centers for Disease Control and Prevention, n.d). The training allows providers to gain the skills they need to lead conversations with their patients, recognize patient stressors and concerns, and make appropriate referrals when needed (Centers for Disease Control and Prevention, n.d). The American Psychological Association also offers an affordable, online psycho-oncology workshop to health care providers that are not familiar with the field of psycho-oncology (American Psychological Association, 2023). The goal of the workshop is to outline essential concepts in the delivery of psycho-oncology services and provide foundational knowledge about recognizing psychological symptoms and approaches to treatment (American Psychological Association, 2023). With this two-step approach of training the clinicians on the importance of health in cancer care and equipping them with the knowledge, skills, and necessary tools they need to address mental health needs, we can work towards enhancing the overall quality of care and improving patient outcomes throughout the cancer journey. Collaborative care models are also a key component in addressing the mental health needs of oncology patients. With this model, it is important to introduce and promote collaborative care teams where mental health professionals work alongside oncology teams. The Memorial Sloan Ketterings Psycho-oncology Education and Training Institute supports this collaborative care approach. The Training institute is led by the Department of Psychiatry with the goal to expand psycho-oncology training opportunities for psychiatrists, psychologists, nurses, and social workers in the oncology setting (Memorial Sloan Kettering Cancer Center, 2023). The training institute is available to all providers, even those outside the Memorial Sloan Kettering health system (Memorial Sloan Kettering Cancer Center, 2023). Establishing and training the proper multi-disciplinary care team can facilitate the creation of detailed protocols MENTAL HEALTH AND CANCER 51 outlining standard operating procedures (SOP) for psychological care post- diagnosis, during treatment, and during times of remission. For example, scheduling an appointment with a social worker immediately following diagnosis as part of their standard of oncology care would be a core aspect of the post-diagnosis SOP. There also needs to be a liaison person, such as a patientcare coordinator, trained in psycho-oncology to serve as support and guide the patients through the process. Several of the participants also reported that having someone to talk to that has gone through a similar cancer journey was a significant resource for them. They stated it is extremely helpful when you have someone you can relate to and talk about treatments and ways to cope. The National Cancer Institute research supports this, stating the number one reason patients join a support group is to be with others who have similar cancer experiences. Research shows that joining a support group improves both quality of life and survival (National Cancer Institute, n.d). It was suggested by one participant to have phone apps, dating apps, and more resources for cancer communities specifically targeting cancer patients who would like to engage with other cancer patients. Future Research This study provided insight into the perspectives of cancer patients regarding their mental health and the impact it has on daily living and the overall disease state. Though there are still many important research directions that can help our understanding of mental health in oncology. Another direction to be explored is the long-term effect of cancer on mental health. While the participants in the study received their initial diagnosis before the COVID-19 pandemic, future studies could examine the impact of cancer on mental health several years after treatment. It would also be of interest to further explore the poor health outcomes and mortality rates that MENTAL HEALTH AND CANCER 52 previous studies have linked to a decline in mental health in this patient population. Future research also needs to be done to identify additional strategies for integrating mental health into cancer care and evaluate the impact each strategy has on patient outcomes. There has been a growing recognition over the past few years that mental health needs to be more adequately addressed among cancer patients, but there are still limited studies on how to successfully integrate it into their cancer care. Conclusion This study aimed to better understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The research also aimed to understand the impact the COVID-19 pandemic has had on their mental health, disease state, and overall well-being. A qualitative approach was adopted using purposeful sampling for participant identification. This study provides important insights into the mental health needs of cancer patients. Our findings suggest that a significant proportion of patients experience anxiety, fear, frustration, and a sense of being overwhelmed, as treatments quickly started, and their lives rapidly and drastically changed. One participant reported their symptoms as a form of PTSD. The participants all expressed feelings of uncertainty and fear surrounding their futures. These symptoms were present at all stages of their cancer journey, including periods of remission, and increased during periods of longer and more intense treatment cycles. The type of treatment, specifically chemotherapy, and surgery, was also reported to have an impact on the participants mental health. The results of this study highlight the need for comprehensive mental health care that is integrated into cancer care. It also demonstrated the importance of addressing the mental MENTAL HEALTH AND CANCER 53 health needs of cancer patients throughout the entire cancer journey to improve the quality of life for cancer patients and their overall well-being. MENTAL HEALTH AND CANCER 54 References Adler, N.E., & Page, A.E. (Eds.). (2008). Cancer Care for the Whole Patient. Meeting Psychosocial Health Needs. Washington (DC): National Academies Press (US). Aubry, L. (2020, December 9). Social isolations toll on cancer patients during COVID-19. 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Quality of Life Research, 30, 19031912. https://doi.org/10.1007/s11136-021-02795-4 MENTAL HEALTH AND CANCER 62 Table 1 Participant Demographics Table Demographic Category 001 002 003 004 005 006 007 Gender Female Female Female Female Male Female Female Age 40 62 44 55 79 55 43 Race White White White White White White White Marital Status Married Married Married Single (Divorced, Widowed) Married Married Single (Divorced) Primary Language English English English English English English English Education Associate Degree Not disclosed Bachelors Degree Grade 12 Grade 12 Some College Doctorate Degree Bachelors Degree Cancer Type Breast Leukemia Brain Leukemia Leukemia Breast Breast- (2007) Brain- (2010) MENTAL HEALTH AND CANCER 63 Table 2 Theme Table Participant ID 001 002 003 005 005 Participant ID 001 Theme 1: Urgency of Treatment Page/Line Participant Quote 2. 45-47 and immediately they told me when I came back, things would move pretty quickly from there. And they did. We got back from vacation, I think on a Saturday, Monday I had my port placed, and Thursday I started my first round of chemo. 2. 66-68 My doctor called at 6 pm on a Friday and said You have leukemia. And I have reserved a bed for you down at Simon Cancer Center and so you have to go down there now. And I was like, well it's Friday. That doesn't sound right. Why don't we wait till Monday? Yeah. She was like, you, you have to go there now (p. 2, 66-68) 1. 6-10 I got sick on myself one day at work so went home not thinking much of it. Thought maybe I just had the flu or something. My youngest was three months old at the time. My friend who is a doctor urged me to go to the ER since my symptoms werent normal. In the ER, after a CT scan and, M RI they found a tumor the size of an egg. After that, things happened quickly. I was in surgery that evening to remove the tumor then started radiation and chemo treatments right away. It was all so quick. 2. 36-39 When I was first diagnosed, I had to go into the hospital and have transfusions because I was very, very low on, uh, blood. My bone marrow had really, uh, quit producing blood. So they told us at the time that had I not come in, I probably would've passed in a couple of weeks. 6. 195-198 I had gone into our family doctor, and he called me, at home and he said, I need you to get to see this specialist in that same day. I want you there in an hour. And we didn't even know where. And that's one thing he said, you do not drive. Have your wife take you. Theme 2: Emotional Overwhelm Page/Line Participant Quote 4. 35-140 So yeah, it's in the beginning it is very much a rollercoaster. I don't know how anyone can be prepared for that. It's just a lot of information in a very short amount of time that even today I still have to stop and kind of digest. And I remember in the earlier weeks waking up some days being MENTAL HEALTH AND CANCER 64 like, is this like true? Like, is this really happening to me? Like, am I, I really have to say I have cancer. Like, it was very hard in the beginning to say like the cancer word. . So, and I just remember my son reaching over and like patting my arm and telling me, mommy, it's gonna be okay at 11 years old. Everyone was making sure I taking the time to you know, heal and breathe basically. so they started Monday, they did a bone marrow biopsy. They explained what was going on because honestly, I was just in shock. 001 2. 80-81 001 5. 184-185 002 2. 80-81 002 3. 85-86 And they're like, your blood counts are so off that if, if, if we had not discovered this within a week, you would've died. 002 6. 221-222 In an out of remission does try, you know, your mental health, you're like, oh my gosh, seriously. Yeah. I totally thought I was done with this. 002 8. 286-288 003 7. 204-207 004 1. 13-15 004 3. 75-76 004 4. 137-139 005 6. 185-186 005 6. 190-194 I try to find that ability to think that things are going to go well. But then I got, re-diagnosed again and you're like, oh my gosh, are you kidding me? Seriously. The whole process was very overwhelming. Which is why the mental health aspect should be addressed periodically throughout the process. I had long hair and my hair was like thick, real thick. But that was my thing. I didn't wanna lose my hair. That, that's where I had the emotional time dealing with, was mostly my hair. Treatment this time around has been much more difficult because it's been longer and more physically fatiguing. I believe that's been more mentally trying than anything. And that's, that's where, the connecting of the emotional piece of it a little bit is. Different factors play a role, like that physical connection to people. I think because you know, when you first hear leukemia, you think it's a death sentence. You know. And so, at first, we were both very scared. We were very worried until, you know, he explained this is a rare type of leukemia and it's treatable but not curable. And uh, you're not gonna die from it. You're gonna die with it. So, MENTAL HEALTH AND CANCER 005 7. 217-220 007 1. 5-7 007 1. 7-15 Participant ID 001 003 003 003 005 65 uh, that put us on both at a little more ease, but still, we were very upset and very scared. You're not expecting to hear cancer. Youre not expecting to hear anything like that. Like I said, we got the call to go to the specialist and this is all and the same afternoon. I didnt even know what was going on. They, they send me down to the hospital to get a blood transfusion. So you know, that kind of catches you off guard. So I received my first cancer diagnosis in 2007. I was 27, stage three breast cancer. It was traumatic, um, , it just felt like a death sentence and, um, psychologically it wrecks you, I must say. Then I battled through that and then they come my brain tumor in 2010, not a metastasis at a different time. So it was a whole like reopening of that trauma, like going through it a second time. So I've been battling on that since 2010. I had, uh, brain surgery in Duke, at Duke in 2016, um, on the brain. And then I just finished chemoradiation on the brain like last year. Um, and it's, it's very traumatic. Um, it kind of causes a form of like PTSD in essence and there's very little help for that. Theme 3: Fear of the Unknown Page/Line Participant Quote 2. 69-70 So in the beginning, of course being a mom of three young kids, eleven, seven, and three, my first thing was what about my boys? 3. 75-77 Just the not knowing of what is going to happen. What is going to happen with my kids, my husband? The increased anxiety prompted us to make changes and get affairs such as the will, estate planning, and DNR in place. There was just so much to consider, and it was all happening so quickly. 4. 120-121 Even during the time of remission, you always have that worry or thought in the back of your mind of not knowing if you will come out of remission again. It is something you think about every day. 3. 88-90 No matter how was feeling, I just knew I had to keep going for my children. 2. 67-68 Once they got me in remission, I went to the oncologist every three months and then six months and then, um, nine months to keep checking my numbers. MENTAL HEALTH AND CANCER 005 007 007 Participant ID 001: 001: 001 002 66 So, we go to the specialist and we don't even know exactly who it is or what kind of doctor it was. And so the nurse I think knew, we didn't know, you know, she came and gave us a pamphlet and it said, you know, cancer and leukemia, we were just scared to death. 3. 99-10 I don't know if it ever goes away, like the thought never goes away that the next appointment they can tell me I have a week to live. So that's a big one to handle, you know? Um, it can just change at any time. So you always have to be prepared for that. And that's where you kind of have to manipulate your own mind, you know? 4. 108-113 My mental health is a little better when they give you a good diagnosis, like stable or your remission, it helps. And then, the time comes like for your next appointment and then it's like a cycle. Its kind of like chemo where you're getting it, you feel like horrible and then you start to feel better and then you have to get it again. It's kind of like that with the appointments, you start to feel better, and you almost forget about it and then it's time again and it just restarts that madness. Like the mental madness just makes you sick, emotionally sick. Theme 4: Learning to Adapt to a New Normal Page/Line Participant Quote 5. 164-166 I'm a very type A personality and most people that you would probably talk to would tell you I'm very much the caregiver of our family. So it was, it is, and still is very hard for me to kind of step back and relinquish that. 5. 166-167 Like, I'm the fixer, like yeah, I'm the one that's supposed to take care of everything, not people taking care of me. 5. 167-171 So with chemo, especially, like my brain was there, but my body was not. So that was very hard to realize, like, I couldn't do what I was doing, you know, the mommy thing and it's hard to tell your kids, I'm sorry, I can't do that. Like, mommy's just tired, you know? And in the beginning, it was hard for them to process that, but over time, I always say it's our new normal. 3. 103-104 It, it makes you feel really bad. I thought I felt bad before then, you know, , I felt really bad. And then I went home with the caveat that I could wear a mask the entire time I was home and not to absolutely not to go anywhere. 6. 198-201 MENTAL HEALTH AND CANCER 67 And it was hard because without the money coming in from my business, we would've had to declare bankruptcy. I couldnt teach anymore during my treatments, so I had to take a step back and hired a teacher to teach for me. That was very hard. Cause you know, I do not have all the energy that I used to have. Right now I am having some issues and that's battling with the loneliness. It's just you get on Facebook, and you see everybody's got a life. I I feel like I'm in a place where I'm not able to live, like the way I should be living at my age. And as I said, it's like everybody's getting out, working, and doing everything. And I'm not a part of that. I'm not, I feel like I'm not growing as a person because I can't do that anymore. As I said for me, that's been the hardest battle. 002 3. 112-114 002 12. 414 004 10. 300 004 11. 329-335 005 3-4. 108-112 I wear out so easy. Ill take a shower. And had to get to me a chair to sit down, cause I, I couldn't take it without being outta breath. So, you know, it's, that's the main thing that, that I noticed. I don't feel bad. Other, then I just wear out. So easy. Thats the hardest part of this all. I just cant do what I used to do. I cant do many things like even cut the grass because how quickly I wear out so easily. 005 5. 164-165 I've lost interest in NASCAR racing and just a lot of things I used to have interest in I don't really care about. 007 4/5. 169-176 I only received back 45% usage of my left side. And like, something as simple as going to the grocery store, like I just melt down. Just little things. Um, there a huge amount of impact I guess. Um, like I just walking into a grocery store, making it twice as a challenge. It's definitely the mental, the physical part I've worked through, and I've adjusted. I think I'll forever struggle with the mental thing because you know, what they've taken away won't come back. 007 12/13. 403-408 I was in sales and marketing for 16 years prior. Now I just kind of do work with dogs, just work at my own pace and work for myself. It works. It MENTAL HEALTH AND CANCER Participant ID 001: 68 was humbling at first but it's good. I'm just embracing the new normal. Theme 5: Maintaining a Positive Outlook Page/Line Participant Quote 7. 275-279 Ive definitely had my woe is me moments, but in the very, very beginning of this journey, everyone said it's all about your attitude. Yeah. And I've tried to go in with the most positive attitude I can. Like I said, I definitely have my days, but I kind of just went with the, it is what it is, this is what we have to do. I have three boys that still need their mom. I still have sisters and nieces and nephews and my parents and grandparents, and so, you know, I'm gonna fight. 001: 8. 297-300 001 8. 303-304 002 4. 137-139 002 5. 164-168 004 002 5.174 5. 179-182 I just wanted to be a positive light and help people, which is what I've always done. So whether it be in the darkest of times or the brightest of times, that was kind of my goal. And since my diagnosis, I've actually had other friends that have been diagnosed with some pretty serious other cancers, but they all refer to it as we're gonna have an 001 attitude . So we're all on a journey, whether it's the good one, a bad one, somewhere in between. But like I said, I'm just trying to make the best of the situation. So I had a, I don't even know what to call it, an area in my hospital room where I had meaningful sayings to me. I had bible verses up there and different things that could lift me up. I have always been a person who listens to things that bring me up. So, this is how I feel. I am on a bridge above like this gully and the gully goes way, way down. And at the bottom of the gully is like all, theee yuck of self-pity. Oh my gosh, why did this happen to me? Ugh. Life is such. You know? I mean, it's all there. It it's part of me now, but I am going to stay up on the bridge. That's, that's my goal in life. Because you can live life however you want And it is hard sometimes to crawl up and decide what kind of day you're gonna have. But every time you wake up or every time you know, it's three o'clock in the afternoon and you're going, oh man, you still have time to change what kind of day you're having. Yeah. And I just feel very MENTAL HEALTH AND CANCER 002 7. 241-243 003 6. 178-179 002 69 strongly that I can decide what I'm gonna do. I can decide how I'm going to be. So I have to work harder at my mental health during active treatment periods. I have to lift myself up. Like I said, I listen to different kinds of podcasts that lift me up. I go to, we go to church every single week. I just try to stay positive and live each day with a positive outlook. And every person has to decide how they're gonna handle it. You've gotta crawl up, you've gotta crawl up out the hole and find it. But every single person has to do it. And I'm sure everybody does it differently. I have to do it. It's almost daily that I have to listen to something uplifting. Make that choice. 005 14. 478-483 Cause I always just, I never acted like anything was wrong. Like I say, whatever's gonna happen. No sense in worrying about it. It just makes you miserable if you do and thats not going to help. (p. 3, 98-100). 005 7. 244-245 I can tell this one thing, you can't people how to feel about but the worst thing you can do is worry about it. 006 2. 67-70 I have a strong faith and I've suffered other things in my life, so I kind of am like, okay, you can cry for a minute, and I'll pull up your, your boots and get going. 006 3. 97-98 I don't let things bottle up and boil over. I'm just kind of like, take it, release it, be done with it. Move on. 007 007 Participant ID 004 However, there's beauty in it. I kind of refer to cancer as a blessing at the same time because have not gone through what I've gone through, I wouldn't appreciate life the way I do, and I want to see things the way I do, and its overall made me a better human. 3. 95-97 It's like you have your moments. I'm a pretty positive person. Like I know this journey has built my faith, like Christian faith. But I still think my mental health is weak at times, but yeah, I try and inspire others and help others through it. Theme 6: The COVID-19 Pandemic Page/Line Participant Quote 4. 174 ..I was, I was very, very cautious. 1. 23-25 MENTAL HEALTH AND CANCER 70 I didn't go out unless I had to go somewhere. We were careful because we knew that his immune system was compromised. So, you know, we were extra careful. We masked up every time we went out. We didn't do a lot of socializing and stuff like that. Our lives were very slim at that time. It was very isolating, and it was rough, like appointments. You couldn't take anyone with you. 004 005 4. 180 4. 123-127 007 5. 207-208 007 5. 206-207 The pandemic was a tough time, um, but it did also help me in some aspect. I didn't have to go anywhere and make choices. So, that was better and there was no pressure, um, to perform like a normal human where I can't always, I guess, you know? 007 7. 224-226 It definitely also made me more aware of, so, I guess there was somewhat of a benefit to it too, right? Like it made you, it really made you think about what you're doing and as far as like washing your hands or like where you go and what you're touching. Participant ID 002 Theme 7: Mental Health Not Addressed in Standard Cancer Care Page/Line Participant Quote 17. 589-590 I think there could be more of having mental checks of how you are doing and do you need more support. And leukemia is just a weird bird because you have to stay in the hospital. 003 1. 21-24 003 5. 157-163 007 8. 253-256 I dont ever recall the state of my mental health being addressed, but there was so much going on at the time I honestly just kind of ignored my mental health. Probably as a coping mechanism I dont recall mental health ever being addressed by my providers. Medical professionals never did any type of screening or asked if I needed to talk. I think it would be helpful for them to have periodic check-ins throughout treatments to ask, How are you doing, Whats going on or say here are some resources for you. Definitely more outreach with healthcare professionals is needed. Its crucial. That's kind of a bucket list item of mine. I'd love to create more of an outreach to where people know where to talk to people that are going on the same MENTAL HEALTH AND CANCER 71 journey. Make it more like accessible and like, you know exactly where to go, you know. 007 8. 263-270 They never asked, how are you really doing? Because it's important. I think if your mental health is good, you can, I notice from my journey, like when I maintain a positive mental health, you fight through it much easier and um, and when you're mentally wrecked it's so much harder. Theme 8: Amount of Mental Health Resources given by Providers Participant ID 001 Page/Line 4. 149 Participant Quote It is needed to have support. And just the cancer kind of community. 002 16. 543-545 So as far as the doctors, there was a place where you could go out and they had a bookshelf of books, but I don't think any of them were about the mental, like lifting you up. They were all about what is leukemia, that kind of thing. 002 16. 549-555 And then before I had my transplant, I got like a three-ring binder on kind of what to expect. I've never looked at that since I probably should have. And, but nobody ever said, oh, well, you know, that's on page 10 of the three-ring binder you got. And there really wasn't anything there, but mental, I don't remember anything. 002 16/17. 565-577 But as far as them sending around someone who, who says, Hey, how are you doing? Have you thought about listening to this? Here are some resources for you to get, I dont remember any of that. All of my stuff I just found on my own. 003 2. 56-58 I was given a Welcome to Oncology Packet but honestly dont know if there were any resources in there. They were never like reviewed with us or it was never said here are some resources for you. 004 5. 145-151 I talk to a mental health therapist, psychologist. I talk to her about once a week. I've talked to her a while though; she was not given to me as a resource from my cancer. I've been talking to her for a few years now since around the start of the pandemic. 007 1. 17-21 I feel like there needs to be more resources for people that have gone through this. To help you just, it, it wrecks you, you know? So, since my first diagnosis, like, I haven't slept all night since MENTAL HEALTH AND CANCER 72 probably 2007. I was put on disability after my brain surgery and that's very humbling cuz I'm young, I'm just 43 and, um, I don't know, it's a very humbling and um, yeah, very psychologically damaging. (p. 1, 17-21) 007 2. 58-60 For the breast cancer, I was offered like the cancer services of Indiana, but yet it's still kind of limited, you know? I don't think there's enough. 006 1. 10-13 I know that they immediately offered health resources to me. They probably had a mental health counselor in the meeting, so I knew something was kind of weird that there was more than one person talking to me and they immediately asked how I felt, and did I want free counseling? 006 1.18-19 005 7. 217-220 I know I went back to a subsequent appointment, and they said, how do you feel about your cancer diagnosis? My doctors were on top of it and offered the resources we needed. I know if we were to need more, I feel confident on where to go to receive them. MENTAL HEALTH AND CANCER Figure 1 Theme Concept Map *Theme most often discussed by all participants. Defined as the most critical factor in maintaining mental health. 73 MENTAL HEALTH AND CANCER 74 Appendix A Volunteer Recruitment Information This research project has been approved by the University of Indianapolis Institutional Review Board Approval Date: 10/14/2022 Approval Number: 01691 Hello all, I am reaching out today for assistance with my doctoral research project. My research is on the Mental Health Impacts of a Cancer Diagnosis, and the goal of the study is to better understand the experiences of oncology patients and their perceptions about the relationship between their mental health and the current state of their cancer. The mental health of oncology patients is an essential aspect of diagnosis and treatment that is not adequately addressed. Past research has shown that adults diagnosed with cancer are nearly six times more likely to develop a psychological disorder than adults not living with cancer. *Please note, this research is not affiliated with the American Cancer Society, but for my own educational pursuits. What should you expect? One-time interview in person or virtually that is expected to last approximately 45 minutes, with a follow-up communication approximately 2-4 weeks after the interview to discuss the researchers interpretations about information shared. Who can participate? You may be eligible if: At least 18 years of age. Fluent in English. Diagnosed with cancer stages 1-4 of any type prior to the start of the COVID-19 pandemic. Undergoing current treatments. If you, a family member, or a friend would like to learn more about participating, please contact me by email or my cell phone number listed below. Thanks so much for your time and consideration, Madeline Naylor, MSc, CCRC Relay for Life Co-Lead, Clinical Operations Manager MENTAL HEALTH AND CANCER 75 Appendix B Study Information Sheet Informed Consent Minimal Risk UIndy Study # 01691 Study Version: 1 Study Version Date: 10/14/2022 Informed Consent Form (ICF) Version: 1 ICF Version Date: 10/14/2022 KEY INFORMATION FOR POTENTIAL RESEARCH PARTICIPANTS ABOUT THIS RESEARCH You are being asked to participate in a research study. Study participation includes one semistructured interview that is expected to last approximately 45 minutes in length, with a follow-up communication approximately 2-4 weeks after the interview to discuss the researchers interpretations about information shared. The interview questions included in the semistructured interview may cause some individuals to become anxious or upset. You may choose not to take part in the study or skip any question that causes discomfort. You may also choose to leave the study at any time. The mental health of oncology patients is an essential aspect of diagnosis and treatment that is not adequately addressed. Patients with cancer are at a higher risk of developing psychological disorders that impact their disease progression and overall well-being. Your participation in this study could contribute to future medical care to help oncology patients affected by mental health disorders. CONSENT TO PARTICIPATE IN RESEARCH STUDY Mental Health Impacts of a Cancer Diagnosis Study Principal Investigator (PI): Dr. Lisa Borrero UIndy Email: borrerol@uindy.edu UIndy Telephone: 317-791-5144 Madeline Naylor, MSc, and Dr. Lisa Borrero, Ph.D., FAGHE from the Department of Interprofessional Health and Aging Studies at the University of Indianapolis (UIndy) are conducting a research study. Why is this study being done? Adults diagnosed with cancer are nearly six times more likely to develop a psychological disorder than adults not living with cancer. By collecting this information, healthcare workers will better understand how patients experience their mental health after receiving a cancer diagnosis. If a clear connection exists between mental health disorders and disease progression, protocols could be created to care for these disorders more effectively as part of standard oncology care. MENTAL HEALTH AND CANCER 76 What will happen if I take part in this research study? If you volunteer to participate in this study, the researcher will ask you to do the following: Semi-Structured Interview: You will be asked questions about your cancer diagnosis, mental health, daily activities, and demographics. Member Checking: Approximately 2-4 weeks after the interview, you will have the opportunity to review a detailed summary of the themes understood by the researcher to confirm or provide clarification about the accuracy of the researchers interpretations. How long will I be in the research study? Participation will take a total of about 1-2 hours. Are there any potential risks or discomforts that I can expect from this study? The questions included in the semi-structured interview may cause some individuals to become anxious or upset. You have the right to refuse to answer any questions and may ask to stop the interview at any time for any reason. Are there any potential benefits if I participate? There is no direct benefit to participating in this study. We hope the knowledge gained from this study will be beneficial to society in improving our understanding of how patients experience their mental health after receiving a cancer diagnosis and the additional impact highly stressful events, like a pandemic, have on their mental health. Will information about me and my participation be kept confidential? All data, including the audio recordings, will be stored securely. The documents will be held in a secure area, and only authorized researchers and personnel working on the study will have access to the study documents. You will be assigned a study ID in lieu of your name, and all personal health information will be omitted from all study documents. If any personal health information is included during the interview, the information will be omitted during the transcription process. All recordings will be properly destroyed when no longer needed. The results of this study may be published in a scholarly book or journal, presented at professional conferences, or used for teaching purposes. However, only aggregate data will be used. Personal identifiers will not be used in any publication, presentation, or teaching materials. Will the data from my study be used in the future for other studies? It is possible that de-identified data from this study could be used for future research or shared with other researchers for use in studies, without additional informed consent. De-identified means that any codes and personal information that could identify you will be removed before the data is shared. MENTAL HEALTH AND CANCER 77 What are my rights if I take part in this study? You can choose whether or not you want to be in this study, and you may withdraw your consent and discontinue participation at any time. Whatever decision you make, there will be no penalty to you and no loss of benefits to which you were otherwise entitled. You may refuse to answer any question/s that you do not want to answer and remain in the study. Whom can I contact if I have questions about this study? The Research Team: If you have any questions, comments, or concerns about the research, you can talk to one of the researchers. Please contact: Dr. Lisa Borrero (PI) at 317-791-5144, borrerol@uindy.edu, or Madeline Naylor (CoInvestigator) at 765-438-0959, naylorm@uindy.edu. The Director of the Human Research Protections Program (HRPP): If you have questions about your rights as a research participant, or you have concerns or suggestions and you want to talk to someone other than the researchers, you may contact the Director of the Human Research Protections Program, by either emailing hrpp@uindy.edu or calling 1 (317) 781-5774 or 1 (800) 232-8634 ext. 5774. Follow up studies We may contact you again to request your participation in a follow-up study. As always, your participation will be voluntary, and we will ask for your explicit consent to participate in any of the follow-up studies. How do I indicate my informed consent to participate in this study? If you consent to participate in this study, then you affirm that you satisfy inclusion criteria, and your consent is voluntary. You do not need to sign this, or any other document to indicate your consent. Completion of the interview indicates that you are willing to participate. MENTAL HEALTH AND CANCER 78 Appendix C Interview Guide Thank you again for your interest in this research study! The responses you provide during the interview are confidential and will be used for this study only. The results will be disseminated through a scholarly paper and or/ journal article. All identifying information will be removed. The purpose of this interview is to explore your views on how mental health impacts a cancer diagnosis. The study aims to identify the role of mental health in cancer outcomes. Participation in this interview will help researchers better understand the role mental health plays and how to incorporate this information when considering well-rounded cancer treatments. Your participation in the interview is entirely voluntary, and I expect the interview time frame to be 45 minutes to one hour. It is your choice whether to answer a question. You may choose to skip it entirely without consequence. You also may choose to terminate the interview at any time for any reason without consequence. Do you have any questions about the interview or how the information will be used? To ensure your words are accurately represented during the interpretation of data, this interview will be recorded. As mentioned previously, audio recordings will be used for this project only and kept confidential. Is it okay for me to start the audio recorder? [Wait for response] Okay, I have started the recording, and we will begin. 1. Will you share your experience of receiving your cancer diagnosis? 2. How would you describe your mental health as it is right now? a. Has your mood or mental health impacted your cancer treatments? 3. Can you describe how the state of your mental health has changed since receiving your cancer diagnosis? MENTAL HEALTH AND CANCER 79 4. To whom and in what contexts do you feel comfortable talking about your mental health? 5. Can you explain how your cancer diagnosis impacts your daily life? 6. How do you feel about the changes that have been brought about by Covid-19? a. Have they had any impact on your mental health or well-being? b. Has the pandemic meant that you have any worries for the future? 7. Is there anything else you want me to know, or feel is important that you have not yet shared? Demographics Section To finish the interview, can I collect a few questions about your background and demographics? 1. Background/Demographic Questions: a. How old are you? b. With what gender do you identify? c. How do you describe your ethnic background? d. What is your educational background? e. What is your marital status? f. What is your occupation? I want to thank you so much for your time with this interview. Your cooperation is valued. I can be reached at naylorm@uindy.edu with any questions or concerns about your participation in our study. MENTAL HEALTH AND CANCER 80 Appendix D Approval Letter APPROVAL LETTER To: Apostolova, Liana Protocol #: 17956 Protocol Title: Mental Health Impacts of a Cancer Diagnosis Type of Submission: Initial Level of Review: Exempt Approval Date: Friday, January 20th, 2023 Expiration Date: no date provided. *If Expiration Date = "No date provided," this research does not require annual renewal; thus, there is no expiration date. The HRPP approved the above-referenced submission. The conduct of this study is subject to the HRPP Policies, as applicable. Additional Notes: This research is exempt under the following category: Category 2(ii) Documents approved with this submission: Study Information Sheet Informed Consent Naylor 01691 (3).pdf Data Collection Instrument InterviewGuide_06.26.2022.pdf You should retain a copy of this letter and all associated approved study documents in your research records. If you have any questions or require further information, please contact the HRPP via email. or via phone at (317) 274-8289.  ...

... AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 1 Enhancing Empowerment within Cancer Survivorship: A Symptom Management Program Darby Wildschuetz, OTS May 2023 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Katie Polo, DHS, OTR, CLT-LANA AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 2 Abstract The cancer population is a growing number as treatment evolves and advances. More individuals are facing the harsh side effects that come with such advances during treatment and years after (American Cancer Society, 2023). Many patients are also not aware of these side effects that can occur or how to manage them for maintaining their quality of life (Sae'd Abu ElKass et al., 2021). The purpose of this program was to develop a series of educational workshops addressing the commonly reported symptoms members at the Cancer Support Community of St. Louis experience: cancer-related fatigue, cancer-related cognitive impairments, and cancerrelated peripheral neuropathy. Data was collected through self-reported pre and post surveys to assess their understanding of the symptoms associated with the side effect and how to implement management strategies. The main findings indicated positive results, supporting educational workshops as an effective method on improving understanding of symptoms and management strategies within cancer survivorship for improved quality of life. Keywords: side effects, symptoms, cancer, fatigue, peripheral-neuropathy, cognition AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 3 Introduction Cancer survivorship can be defined as anyone diagnosed with cancer in any stage of the disease such as onset and active treatment or remission (Cancer.Net, 2022). Those in cancer survivorship experience many different symptoms and side effects throughout their cancer continuum. Many do not realize what these side effects are and how to best manage them. Ketterl et al. (2019) surveyed 872 cancer survivors on the effects of cancer treatment on their daily functions. The authors found that 76.3% of survivors felt that the lasting effects of cancer limited the type and duration of their instrumental activities of daily living. The most commonly unmet needs amongst this population included emotional support, fatigue, and being informed about benefits and side-effects of treatment (Wang et al., 2018). It is critical to identify these needs in order to provide the best client-centered care for prevention and management. Community centers like the Cancer Support Community of St. Louis (CSC) are working to fill this gap in cancer care. CSC is a nonprofit organization that serves those impacted by cancer in the Greater St. Louis area. Their members include friends and family of the individual facing cancer, those grieving the loss of a loved one to cancer, and those in cancer survivorship. The site offers various programs to this population such as support groups, counseling, art therapy, movement classes, and educational workshops. Targeting these symptoms and addressing the unmet needs these cancer survivors face through educational workshops could increase their awareness, self-management of symptoms, and overall quality of life. The primary aim of this project is to measure the effectiveness of an educational series through the lens of occupational therapy on learning about the symptoms and implementing coping strategies in order to increase participation/performance with daily tasks. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 4 Background More than 18 million individuals had a history of a cancer diagnosis in January 2022 according to the American Cancer Society. Over 1.9 million new cancer diagnoses are expected to occur in 2023 (American Cancer Society, 2023). With cancer cases rising, more and more individuals are facing the challenges that come with it and its treatment (What is cancer?, n.d.). The treatment for cancer includes surgery, chemotherapy, radiation, stem cell or bone marrow transplant, targeted therapy, or hormone therapy. Not only do cancer patients face symptoms from their disease, but they also face side effects from their treatment. Drott et al. (2022) examined the impact of symptoms on daily life and health of cancer patients and found that the uncertainty of the cancer experience played a large role in increased psychological distress and reduced quality of life. Rohilla et al. (2022) and Yale Medicine (2022) reported some of the most common side effects include pain, fatigue, anemia, hair loss, mouth problems, and nausea/vomiting. These effects may linger and cause long term effects on their participation in daily tasks (Faaij et al., 2022). Efverman (2023) completed a study on reported activity levels at baseline, during radiotherapy, and a month after. This author found that patients' physical, leisure, social, housework, and shopping activity levels decreased during radiotherapy and almost half of the patients activity levels were not restored a month after radiotherapy. Additionally, the author found that those whose prior activity levels did not return were also more likely to experience an anxious and depressed mood and a poor quality of life. A study by Sae'd Abu El-Kass et al. (2021) had similar findings and were most affected with instrumental activities like money management, shopping, housecleaning, and meal preparation. The authors also reported, More than half of the studied patients, 55.3%, had poor knowledge about cancer, side effects of chemotherapy, how to manage these side effects, and level of self-care efficacy. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 5 The authors continued to state throughout their article that many hospital staffing were too busy and overcrowded to properly educate these patients. Van Dyk & Ganz (2021) found that many women with breast cancer were not aware of the cognitive decline that could occur post treatment. In addition, they stated the National Comprehensive Cancer Network guidelines recommend increasing education on cognitive impairments as being important for this population. Henderson et al. (2019) found similar findings and that most women commonly discovered cognitive impairments through fellow survivors by word of mouth. Additionally, Savina & Zaydiner (2019) explored cancer-related fatigue and reported that, Many patients with fatigue do not discuss treatment options for this disorder with their oncologists; therefore, only a quarter of them receive any treatment recommendations. This is an important area to address through the lens of occupational therapy as it is also reported that CRF is a frequent barrier to ones participation in their daily activities. Community-based support services like the CSC STL are emerging to fill the gap in cancer care. The CSC serves various members in the community who have been impacted by cancer. They have connections with local hospitals and staff who refer patients and family members to this organization for support. CSC works with contracted licensed mental health professionals, art therapists, cooking instructors, fitness instructors and various volunteers to meet the needs of their members of all ages. They offer a young adult program as well to target ages 18-40 who are experiencing cancer at this stage of life. This age range tends to have a busier lifestyle as they often have young children, work full time, and are involved in extracurricular. CSC also offers a family program with activities geared towards both parents and kids to bring families together who are experiencing a similar situation. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 6 For this capstone project, a needs assessment was conducted through zoom interviews with the CSC program development staff which is made up of three social workers. It was discovered that educational presentations are popular amongst their members. They reported that these individuals enjoy feeling supported through discussions, expanding their knowledge, and collecting resources to utilize throughout their cancer survivorship. Although their educational presentations are popular and effective, they have never implemented an educational series, presenting topics that build on one another overtime. The staff identified topic areas for this educational program to meet the needs of their members are side effects most experienced by their members: cancer-related fatigue, cancer-related peripheral neuropathy, and cancer-related cognitive impairment. It is evident that there are physical and psychological needs not being met for cancer patients. Current research supports education on cancer and treatment itself for self-care of the side effects experienced with cancer, but less is known about education on management strategies and if they are effective from an occupational therapy perspective. Arunachalam et al. (2021) concluded that prior education on the disease and treatment has a positive correlation to self-care/management practice among participants. Grapp, et al. (2022) found similar support for online education to address psychosocial needs of cancer patients where the interventions could be helpful to implement these skills into everyday life. The aim of this DCE is to develop, implement, and evaluate an educational program on side effects and symptom management within cancer survivorship through the lens of occupational therapy. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 7 Theoretical Framework The KAWA model was utilized to guide this doctoral capstone experience. This model focuses on the flow of harmony in ones life, looking not just at the person at the center, but the interconnectedness of their environment, nature and their personal life experiences (Cole & Tufano, 2020). Applying this to the CSC member population, my project addressed various symptoms of cancer that these individuals experience. I provided education and strategies to help manage these and continue their lives flow. Figure 1 displays a visual reference of the model and frame of reference applied to my capstone. The upstream of the river represents the past, or life before a member was impacted by cancer. The downstream of the river represents their life after being impacted by cancer. Rocks in the river represent impediments to lifes flow, so these would be the educational series topics I addressed. Driftwood in the river symbolizes rescuing someone from the rocks and these would be the management strategies I educated members on to combat the rocks that are affecting them. The sides and bottom of the river represent one's context, places where they interact so for this population it would be CSC, where they connect with others impacted by cancer. Their context can also be their support system, their home environment, and the hospital they receive/d treatment from. Additionally, I utilized the Health Belief Model (HBM) to further guide the implementation of the DCE. This model focuses on the individuals beliefs and cues to action contributing to the main behavior change action. Ones beliefs of developing the effects and/or symptoms of cancer and the severity of it, such as it affecting their physical and mental health further, influences their course of action. Action also depends on ones perception of benefits to action such as gaining coping skills and the barriers to action like a lack of resources or time (Luque, n.d.). It was important to understand these factors to know how to effectively implement my DCE to benefit the members. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 8 Design & Implementation Based on the literature review and needs assessment conducted of this site, there was an unmet need of this cancer population. Many cancer patients are not aware of the symptoms that can occur or how to properly manage them (Abu El-Kass et al., 2021). Through collaboration with CSC STL, it was identified that this was also an unmet need of their members at their site and that educational programs are very popular amongst their members. This capstone used a pre-test post-test single group approach with self-reported surveys to examine the impact of an educational series on symptom management within the cancer population at CSC STL. Follow up surveys were sent out to those that attended the sessions to further assess their knowledge and implementation of the learned strategies for self-management. The surveys were optional, but encouraged, and anonymous to hide the identity of the participants. This method was chosen to evaluate if knowledge was gained on the side effects through the workshop, if they learned the strategies to manage them, and if they learned occupational therapys role within symptom management in cancer survivorship. The workshops were PowerPoint presentations compiled of research on the side effect, how it occurs and presents, management strategies and interactive activities with various discussion points throughout. The presentations were in collaboration with Dr. Katie Polo, my capstone faculty advisor, to have them professionally reviewed by an expert in the field. The primary long term goal of this program was to educate this population on various symptoms that can occur within cancer survivorship and provide them strategies for how to manage these from an occupational therapy perspective. Participants were recruited through various mediums to promote this series. An announcement was made in their education section of the quarterly newsletter for January-March 2023, with descriptions under each workshop for more information. Additionally, using their AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 9 member database, emails were sent about 2 weeks prior to the workshops with designed posters about the presentation. Targeted emails were sent to those who joined the Fitness in Survivorship'' class I was conducting as part of my capstone experience. Each workshop was 1.5 hours long and held via zoom due to the site still being hybrid with their immunocompromised members and the COVID-19 pandemic effects. I lead the workshops through education, guided personal experience discussions, and instructed various activities for self-management strategies for individuals to implement day-to-day. Participants were allowed to ask questions at the end or if they came up naturally during discussions. My contact information was provided at the end for follow-up appointments if participants were interested in continuing a discussion or learning more about how to implement these strategies into their daily routines. The first workshop was Cancer-Related Fatigue & Energy Conservation Techniques and it was a lunch and learn held during week 3. The second workshop was Coping with Cancer-Related Cognitive Impairments and it was held in the afternoon during the 7th week. The third workshop was Managing Cancer-Related Peripheral Neuropathy and it was held in the afternoon during the 10th week. The day after each workshop, a follow-up thank you email was sent to participants. Members would reply and I would respond to questions as needed. No members scheduled follow-up meetings. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 10 Outcomes For this capstone, these workshops were open to the members of the Cancer Support Community of St. Louis to register individually or for all three. Each workshop had varying member attendance. Within the workshops, a pre and post survey were collected anonymously to rate the effectiveness of knowledge and likeliness they would implement management strategies. These numbers also varied as to how many replied to each the pre and the post survey. No members reached out for follow-up appointments following the workshops. The first workshop in January of 2023 on Cancer-Related Fatigue had 14 members attend. Eight responded to the pre-survey (57%) and six (42%) responded to the post survey. Figure 1 displays the average rating of each question on knowledge on the topic, demonstrating positive results in the understanding of the side effects, management strategies and if they would implement them, and an understanding of what occupational therapy is and how it can help. Two members responded to a follow-up survey where they stated they had an increased awareness of their fatigue and began to incorporate exercise into their lifestyle again. The second workshop in February of 2023 on Cancer-Related Cognitive Impairments had 18 members attend. Nine responded to the pre-survey (50%) and six (33%) responded to the post survey. Figure 2 displays the positive results in understanding of the side effects, management strategies and if they would implement them, and an understanding of what occupational therapy is and how it can help for this topic. One member responded to the follow-up survey with 100% learned knowledge and implementing strategies. They also stated the presentation covered detailed information so they were able to better understand cancer-related cognitive impairments. Lastly, the third workshop in March of 2023 on Cancer-Related Peripheral Neuropathy had 22 members attend. 17 responded to the pre-survey (77%) and 10 responded to the post survey (45%). Figure 3 displays AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 11 the results, demonstrating positive outcomes in understanding the side effects, management strategies and if they would implement them, and an understanding of what occupational therapy is and how it can help. Two members responded to the follow-up survey with 100% learned knowledge and implementing strategies. One member mentioned a technique that was not helpful to them was the frozen gloves during chemotherapy and another member expressed interest in trying out other management strategies mentioned in the workshop. Every week, a gentle fitness class was implemented and promoted to all of the CSC members as part of the capstone experience. This program was also highlighted in the workshop presentations as a management technique and overall health improvement. The class enrollment ranged from 2-7 members weekly on both zoom and/or live in person. Formative assessment was performed after each class to ask members for feedback. Many members reported they felt good afterwards and were enjoying the class. Members did not provide any constructive feedback, although it was suggested to record the classes for later viewing or to partake in this class more than once a week. This feedback was taken into consideration and workout videos were made for the organization to promote as a resource on their website which was received with great enthusiasm. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 12 Summary Those impacted by cancer are growing in number, as well as the physical, emotional and psychosocial tolls they face. The cancer journey they experience impacts their daily participation and performance in everyday tasks. Side effects like fatigue, cognitive impairments, and peripheral neuropathy all affect their quality of life. This population has minimal knowledge on these side effects that can occur and how they can impact them as well as how to manage them (Sae'd Abu El-Kass et al., 2021). It is evident that education on these topics demonstrates improved self-care/management practices, but there is still a lack of understanding as to how this education is best presented for carryover to improve ones quality of life (Arunachalam et al., 2021). Once this gap was identified, a needs assessment for the Cancer Support Community St. Louis discovered a desire for more education on these popular symptom areas. A program was developed to specifically address education on symptoms and management strategies for these in order to increase understanding of them and self-manage them to be able to participate in daily tasks without their compromise. Three workshops were provided on fatigue, cognitive impairments, and peripheral neuropathy. Members were asked to complete a pre and post survey around the workshop. The results identified that many members did not understand these symptoms nor how to manage them. From the workshops, members gained more understanding of the factors that went into each side effect, the symptoms that can occur, how to manage them, and occupational therapys role in management as well. Members reported an increase in confidence for self-advocacy and shared valuable resources with one another, gaining support from others and not feeling alone in their cancer journey. An area of improvement for the project could be sending out materials prior to the workshop so members could take notes and develop questions beforehand. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 13 Conclusion The primary aim of this program was to educate members of a community-based cancer support center (CSC STL) on the side effects that can occur in cancer survivorship and how to manage them through strategies. Through this program, members not only learned more about management strategies for symptoms, but also had guided discussions about their symptoms with other individuals experiencing them. This brought a sense of feeling more understood and also learning about resources others had tried. This program helped CSC STL members gain more understanding of three common side effects that can occur as well as all of the symptoms from them. By learning about the factors that play a role in these side effects, identifying symptoms that can occur, and management strategies, members gained more knowledge on how to selfmanage these symptoms in order to continue or return to participating in their daily activities. These workshops were very highly attended and well-liked by the feedback, further demonstrating the importance and need of these educational presentations. The CSC STL will continue to hold educational workshops for their members with this new awareness of how liked they are, especially when held by medical professionals. In the realm of occupational therapy, cancer care is an emerging practice area with a growing need as demonstrated by the lack of knowledge these members reported prior to the educational workshops. Although occupational therapists have a defined role in cancer care, there is still limited research on occupational therapy in cancer care from a rehabilitation standpoint for management and chronic care now. Many studies focus on certain stages rather than the full continuum of care within survivorship. Occupational therapy can address areas such as fatigue, neuropathy, intimacy issues, pain, cognitive impairments and many more. Further development of these community-based programs are needed to continue to address these gaps in care for this population. AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 14 References Abu El-Kass, S., Ragheb, M. M., Hamed, S. M., Turkman, A. M., & Zaki, A. T. (2021). Needs and self-care efficacy for cancer patients suffering from side effects of chemotherapy. Journal of Oncology, 2021, 19. https://doi.org/10.1155/2021/8880366 American Cancer Society. (2023). Cancer facts & figures 2023. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/2023cancer-facts-figures.html Arunachalam, S. S., Shetty, A. P., Panniyadi, N., Meena, C., Kumari, J., Rani, B., Das, P., & Kumari, S. (2021). Study on knowledge of Chemotherapy's adverse effects and their selfcare ability to manage - the cancer survivors impact. Clinical Epidemiology and Global Health, 11, 100765. https://doi.org/10.1016/j.cegh.2021.100765 Cancer.Net. What is cancer survivorship? (2022, June 30). https://www.cancer.net/survivorship/what-cancer-survivorship Cole, M. & Tufano, R. (2020). Applied theories in occupational therapy: A practical approach. (2nd Ed.). Thorofare, N.J.: SLACK Inc Drott, J., Bjrnsson, B., Sandstrm, P., & Berter, C. (2022). Experiences of symptoms and impact on daily life and health in hepatocellular carcinoma patients. Cancer Nursing, 45(6), 430437. https://doi.org/10.1097/ncc.0000000000001044 Efverman A. (2023). Physical, Leisure, and Daily Living Activities in Patients Before, During, and After Radiotherapy for Cancer: Which Patients Need Support in Activities?. Cancer AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 15 nursing, 10.1097/NCC.0000000000001187. Advance online publication. https://doi.org/10.1097/NCC.0000000000001187 Faaij, M., Schoormans, D., & Pearce, A. (2022). Work, daily activities and leisure after cancer. European Journal of Cancer Care, 31(4). https://doi.org/10.1111/ecc.13596 Grapp, M., Rosenberger, F., Hemlein, E., Klein, E., Friederich, H.-C., & Maatouk, I. (2022). Acceptability and Feasibility of a Guided Biopsychosocial Online Intervention for Cancer Patients Undergoing Chemotherapy. Journal of Cancer Education : The Official Journal of the American Association for Cancer Education, 37(1), 102110. https://doi.org/10.1007/s13187-020-01792-4 Henderson, F. M., Cross, A. J., & Baraniak, A. R. (2019). A new normal with chemobrain: Experiences of the impact of chemotherapy-related cognitive deficits in long-term breast cancer survivors. Health Psychology Open, 6(1), 2055102919832234. https://doi.org/10.1177/2055102919832234 Kessels, E., Husson, O., & van der Feltz-Cornelis, C. M. (2018). The effect of exercise on cancer-related fatigue in cancer survivors: a systematic review and meta-analysis. Neuropsychiatric disease and treatment, 14, 479494. https://doi.org/10.2147/NDT.S150464 Luque, M. (n.d.). Behavior change theory: Help clients stick with their program. NASM. https://blog.nasm.org/behavior-change-and-motivation/behavior-change-science Rohilla, K. K., Batra, A., & Kalyani, C. V. (2020). Incidence and severity of self-reported chemotherapy side-effects in patients with hematolymphoid malignancies: A cross- AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 16 sectional study. Cancer Research, Statistics, and Treatment, 3(4), 736. https://doi.org/10.4103/crst.crst_87_20 Sae'd Abu El-Kass, Marwa M. Ragheb, Safaa' M. Hamed, Anas M. Turkman, Azhar T. Zaki. (2021). Needs and Self-Care Efficacy for Cancer Patients Suffering from Side Effects of Chemotherapy. Journal of Oncology, vol. 2021, Article ID 8880366, 9 pages, 2021. https://doi.org/10.1155/2021/8880366 Savina, S., & Zaydiner, B. (2019). Cancer-Related Fatigue: Some Clinical Aspects. Asia-Pacific Journal of Oncology Nursing, 6(1), 79. https://doi.org/10.4103/apjon.apjon_45_18 Van Dyk, K., & Ganz, P. A. (2021). Cancer-Related Cognitive Impairment in Patients With a History of Breast Cancer. JAMA, 326(17), 17361737. https://doi.org/10.1001/jama.2021.13309 Wang, T., Molassiotis, A., Chung, B. P., & Tan, J.-Y. (2018). Unmet care needs of advanced cancer patients and their informal caregivers: A systematic review. BMC Palliative Care, 17(1). https://doi.org/10.1186/s12904-018-0346-9 Yale Medicine. (2022, February 4). Side effects of cancer treatment. Yale Medicine. Retrieved January 30, 2023, from https://www.yalemedicine.org/conditions/side-effects-cancertreatment AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 17 Figure 1 Theoretical Framework AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 18 Figure 2 January 2023 - Cancer Related Fatigue & Energy Conservation Techniques Figure 3 February 2023- Coping with Cancer-Related Cognitive Impairments Figure 4 March 2023 - Managing Cancer-Related Peripheral Neuropathy AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 19 Appendix A DCE Weekly Planning Guide Week 1 DCE Stage Weekly Goal Orientation 1) Complete orientation by the end of the week 2) Complete Needs Assessment by the end of the week 3) Attend other CSC programs by the end of the week 2 Screening/ Evaluation 1) Complete search of literature for program evaluation measures by midweek 2) Prepare for first workshop Objectives Tasks Meet with site mentor, other staff to introduce myself and educate them on why I am here/what I will be doing for the 14 weeks Set up meeting with site mentor and advisor Discuss supervision plan and update MOU with site mentor Understand site environment/where to work/dress code/etc Update goals for MOU Determine who to meet with and what questions to ask and set up meeting Review other programs and attend to get acquainted with other facilitators and members Review calendar and register for other CSC programs, attend class and introduce myself Establish Outcome assessment Review outcome assessments with site mentor & faculty mentor Review presentation with site mentor and advisor Join young adult cooking class to get acquainted with these 1/10 1/12 Ensure that all paperwork for orientation is complete Finalize questions for Needs Assessment Finalize workshop presentation Date Complete 1/9 Set up meeting with site mentor and advisor to review presentation Register for cooking class and introduce self to instructor and members 1/18 1/20 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 3 presentation by end of the week members and the cooking facilitator 3) Participate in young adult cooking class in the middle of the week Finalize MOU 3) Turn in MOU by 1/20 Implementation 1) Turn in Introduction draft by 1/23 Finalize Introduction draft Finalize notes and surveys for first workshop 2) Present first workshop on 1/24 Meet with site mentor and follow up with members 3) Review/receive feedback on workshop by end of week 4 Implementation 1) Turn in Background draft by 1/30 2) Respond to email responses from first Finalize Background draft Connect with members and provide answers or resources to their follow-up questions Layout the next workshop powerpoint 20 Meet with mentor to finalize MOU and turn in with signatures Complete research on the cancer population and overview of project for Introduction draft 1/23 Write out notes for more information on slides, copy survey links 1/27 1/24 Ensure zoom access and screen sharing for workshop Schedule meeting with site mentor for feedback Send follow up email to participants Complete research on CSC and member population and need for project 1/30 2/1 Complete research on information 2/3 or resources for members Reply to member emails AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT workshop by mid-week 5 3) Begin working on next workshop presentation by the end of the week Implementation 1) Turn in Design and Implementation draft 2/6 2) Complete half of next workshop presentation by the end of the week 21 Create next workshop powerpoint and complete introduction slides Understand terminology for data collection Research proper terminology for survey collection Draft up definitions, causes, and symptoms for next workshop Research definitions, causes and symptoms for next workshop Draft up app and technology slides for management strategies 2/6 2/10 Research apps and technology for management strategies 3) Begin laying out management strategy slides by the end of the week 6 Implementation 1) Finalize second presentation by the end of the week 2) Contact young adult members Finalize management strategies and support resources for presentation Finalize workout for class Contact members to understand their current level of fitness and Research other management strategies and support within community for further medical care Get contact list of young adult members from staff member 2/15 2/17 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 7 signed up for my fitness pop up class by midweek Implementation 1) Present second workshop on 2/21 2) Lead young adult fitness pop up class on 2/22 3) Complete midterm evaluation by the end of the week remind them about the pop up class Email/call young adult members Finalize notes and surveys for workshop Write out notes for more information on slides, copy survey links 2/21 Research and print off warm up and cool down exercises and resources for young adult class 2/24 Provide resources to fitness class participants Follow up with workshop and fitness class participants Discuss if the workshops presented and fitness classes are meeting the needs of CSC Discuss positive and constructive feedback 8 Implementation 1) Begin third presentation by mid-week 2) Begin Outcomes draft by mid-week 22 Create introductory and definition slides Connect with health fair attendees and spread awareness of CSC Obtain at least 3 new member 3) Represent CSC contact information at health fair on 3/1 and 3/2 2/22 Get contact information from zoom and live attendance, send follow up email and resources to participants Set up meeting with site mentor for midterm evaluation and second workshop feedback Create third powerpoint presentation with introductory slides Research definitions, causes, and symptoms Gather supplies for health fair and directions/parking for health fair Organize elevator speech of CSC and my role to increase awareness 3/1 3/2 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 9 Implementation 1) Complete third presentation by the end of the week 2) Create visual graph for the Outcomes draft by the end of the week 10 Implementation 1) Turn in Outcomes draft by 3/13 Implement Ohio State resources into powerpoint and finalize management strategies Research Ohio State management techniques further and other strategies for workshop Prepare resources to email to members after workshop presentation Scan handouts and prepare to email members Finalize notes for workshop Write out slides and further talking points for information Finalize current data for analyzing Research Qualtrics for creating visuals of data Finalize Outcomes draft Finalize notes and surveys for third presentation 2) Present third workshop on 3/14 Follow-up with workshop participants 11 Implementation 1) Turn in Dissemination Plan on 3/20 2) Complete final graphs for 23 Enter in data on Qualtrics and create graphs Format graphs correctly for finalizing the Outcomes draft Write out notes for more information on slides, copy survey links 3/10 3/13 3/14 Schedule meeting with site mentor for workshop feedback Finalize dissemination plan Send follow up email to participants Research dissemination methods Finalize graphs for analyzing survey data Reformat surveys on Qualtrics and recreate graphs 3/20 3/24 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 12 analyzing data by the end of the week Implementation 1) Create new graphs for ease of understanding by the end of the week 2) Begin creating educational handouts by the end of the week 13 3) Begin laying out fitness class for online recordings by the end of the week Discontinuation 1) Begin creating dissemination materials by the end of the week 2) Begin working on Abstract, Summary, and Conclusion drafts by the end of the week 3) Complete fitness class Format graphs directly from Google Forms Layout educational handouts of each workshop for online member resources Create a warm, full body workout, and cool down layout for fitness class recordings 24 Carry over current data from surveys into excel and create graphs 3/31 Access Canva and transfer/reduce workshop information Research more on fitness and workout routines within cancer survivorship Type up exercises for each video recording Layout workshop information for handouts during dissemination Access Canva, write out each program and its information: time, attendees, survey results Continue editing educational handouts Review spelling and formatting for educational handouts on Canva Outline Abstract, Summary and Conclusion drafts Refer back to introduction and background for summary draft Finalize warm up, full body workout, and cool down After summary and conclusion exercises for recordings drafts, outline Abstract draft 4/7 AN EDUCATIONAL SERIES ON SYMPTOM MANAGEMENT 14 Dissemination layout for online recordings by the end of the week 1) Turn in Abstract, Summary and Conclusion drafts on 4/10 2) Disseminate to site at Thursday staff meeting 3) Provide educational handouts at Thursday staff meeting 4) Record fitness videos by the end of the week 5) Complete final evaluation by 4/14 Finalize Abstract, Summary and Conclusion drafts Finalize graphs for visual data analysis in excel Finalize educational handouts on Canva for dissemination to provide resources for members online Complete write up of workout routines for recordings Discuss if the workshops and fitness classes met the needs of CSC Discuss positive and constructive feedback 25 Review and edit order of exercises to ensure breaks and overall flow during recordings Ensure correct formatting for Abstract, Summary and Conclusion drafts and turn in 4/10 4/13 Ensure all data is entered on excel 4/14 and graphs are formatted correctly Print handouts of capstone project and outcomes from Canva to present Set up time/meeting to record on zoom for online resources Record workouts Schedule meeting for final evaluation with site mentor  ...

... YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 1 A Program for Young Adults within the Community Cancer Survivorship Setting Morgan Haney May 4, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Kate M. Polo, DHS, OTR, CLT-LANA YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 2 A Program for Young Adults within the Community Cancer Survivorship Setting Morgan Haney The University of Indianapolis YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 3 Abstract Young adult (YA) cancer survivors and YAs impacted by familial cancer experience a variety of barriers that impact their overall well-being, however, there is a distinct lack of targeted programming for this population. As YAs are beginning to live more independently and establish themselves within the community, one can see how a cancer diagnosis would impact their development and ability to transition to their next stage of life. It is necessary to understand the unique needs of the YAs and how cancer impacts their independence and social wellness to better facilitate inclusivity and independence for this population. With education on occupational therapy (OT) services, self-care, stress management, and social wellness and participation in a social event, OT practitioners can educate and encourage independence and social participation within the community. The purpose of my Doctoral Capstone Experience (DCE) was to develop and implement the YA Cancer Support Program at the Cancer Support Community (CSC) Indiana with the goal of increasing knowledge on various topics and providing a social opportunity to the YA population. It was determined that all participants reported having a better understanding of what OT is and how OT can help in cancer survivorship. They also reported having a better understanding of social wellness and how to incorporate social activities within their lives. Additionally, all participants reported that they would be interested in attending future YA programming events. The results of this program indicate the positive impact OT can have within the community cancer survivorship setting which further advocates for OT within emerging practice settings. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 4 A Program for Young Adults within the Community Cancer Survivorship Setting With the most recent data in 2017, 1,701,315 new cases of cancer were reported in the United States, meaning that for every 100,000 people, 438 new cancer diagnoses were reported (Centers for Disease Control and Prevention (CDC), 2017). In Indiana, 34,318 cases of cancer were reported in 2017 (CDC, 2017). Not only does cancer affect the patient, it also affects family members, significant others, and friends of that individual (Al & Ahmad, 2018; DionneOdom et al., 2018; Metcalf et al., 2017; Morris et al, 2018; Patterson et al., 2017). Clearly, cancer has touched many lives. The Cancer Support Community (CSC) Indiana is a non-profit organization that offers a wide variety of free, evidence-based programs and resources for cancer survivors and their support system. At CSC, the mission is To ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. So that no one faces cancer alone (CSC, n.d.). CSC recognizes the important role that occupational therapy (OT) can bring to cancer survivorship within the community setting and worked closely with me for ideas on program development. In 2021, CSC did not offer any programming for the young adult (YA) population, therefore, I collaborated closely with my site mentor, Lora Hays, and CSCs program and outreach coordinator, Hunter Stafford, to develop YA programming. The purpose of my DCE was to increase knowledge on various topics and provide a social opportunity to the YA population through the development and implementation of the YA Cancer Support Program at CSC. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 5 Background Literature Review Occupational Therapy within the Community Cancer Survivorship Setting Cancer survivors may face many physical and mental impairments throughout their cancer journey which can have a significant impact on their daily functioning. Occupational therapy (OT) can provide a unique perspective that can benefit cancer survivors as they face limitations in daily activities (Baxter el al., 2017 & Polo et al., 2017). Within the community cancer survivor setting, OT can offer health and well-being services that help improve cancer survivors participation in life roles. social participation, occupational and community engagement, and quality of life (Polo et al., 2017; Coss et al., 2017). These services can be provided in a group setting with client-centered services and OT can further refer to outpatient OT if the individual has any individualized needs (Polo et al., 2017). More specifically, OT can provide services addressing barriers such as cancer-related fatigue management, cancer-related cognitive dysfunction strategies, cancer-related peripheral neuropathy management, cancerrelated pain management, lymphedema management, and psychosocial issues (Baxter et al., 2017). By addressing these barriers, OT can facilitate increased participation in daily activities aimed at improved health, well-being, and participation (Coss et al., 2020). The cancer survivor community setting has been considered an emerging practice area for OT (Polo et al., 2017). OT practitioners have faced several barriers to providing services including not being recognized as an important service at interdisciplinary program planning meetings (Polo et al., 2017). Due to the lack of awareness of what OT can offer, providing clear documentation and gaining reimbursement for OT services within the cancer survivorship YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 6 community setting has been difficult. Due to this, OT practitioners must continue to increase awareness of the cancer survivor community setting within the OT profession, develop supporting documentation of OTs role, advocate for a larger role for OT within this setting, and document and disseminate the efficacy of interventions in cancer survivorship programs (Polo et al., 2017). According to a scoping review, there has been minimal research on OT within the YA cancer survivor population indicating that there is a need for advocacy for OT within this population (Wallis et al., 2020). Completing my DCE within the cancer survivorship community setting has advocated for OT programs within CSC, provided documentation of successful programming within the YA cancer survivor population, and shared awareness of this emerging practice setting with fellow colleagues and professions. Young Adults Impacted by Cancer: Physical and Psychosocial Impacts For YA cancer survivors, there have been many physical and psychosocial impacts. Some common physical symptoms of cancer included lymphedema, fatigue, pain, and peripheral neuropathy (Polo & Smith, 2017). Cancer-related fatigue has been one of the most prevalent, severe, and debilitating symptoms in the YA cancer survivor population and early fatigue intervention has been warranted before any maladaptive rest-based behaviors develop during this YA age (Spathis et al., 2015; Spathis et al., 2017). These cancer-related symptoms can negatively impact participation in daily activities, including self-care, which can directly impact overall quality of life (Baxter et al., 2017; Wallis et al., 2020). The psychosocial effects of cancer can also have detrimental impacts on YAs mental health. YA cancer survivors tend to experience increased feelings of depression and anxiety and their social wellness can be negatively impacted (Penn & Kuperberg, 2018). Also, considering the significance of peer relationships during young adulthood, social-based interventions can play an important role in YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 7 development and psychological adjustment and may potentially lead to a decrease in depression and anxiety (Penn & Kuperberg, 2018). In one study, more than 50% of the psychosocial needs of YA cancer survivors remained unmet due to limited availability of intervention programs and services that specialize within this unique population (Aubin et al., 2018). In another study, many YA cancer survivors reported unmet health care needs, including physical and occupational therapy and mental health services (Keegan et al., 2012). This indicates a need for advocacy for OT services and psychosocial intervention within the YA cancer survivor population. For YAs impacted by familial cancer, there have been many reports of unmet needs including conflict among their social roles, lack of education on the caregiving role, time restriction for leisure activities, strain in familial and friend relationships, psychological distress, and diminished physical and mental wellbeing (Kim & Carver, 2019; Morris et al., 2018; Patterson et al., 2017). Due to the increased household and caregiving responsibilities, YAs impacted by familial cancer tend to experience isolation from those outside of the family and activity restrictions (Metcalf et al., 2017; Morris et al., 2018). In a study that focused on examining the psychosocial impacts of parental cancer on YAs, it was found that YAs reported higher state and trait anxiety and a lower social support satisfaction (Metcalf et al., 2017). These findings suggested that having a larger and more satisfying social support network predicted lower state and trait anxiety in YAs affected by parental cancer (Metcalf et al., 2017). Poor coping strategies, increased responsibility, the caregiving role, and decreased social support can have a significant impact on the mental health of YAs (Kim & Carver, 2019; Metcalf et al., 2017; Morris et al., 2018; Patterson et al., 2017). In a study focusing on describing levels of and relationships between distress and psychosocial unmet needs in YAs impacted by familial cancer, it was found that these individuals experience 3 to 6 times the levels of high or very high YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 8 distress (Patterson et al., 2017). These levels were similar to the levels of other YAs who seek treatment for mental health issues (Patterson et al., 2017). Clearly, the mental health of YAs has been negatively impacted when a parent or family member received a cancer diagnosis. Theoretical Framework Since my project focused on a population that has not been directly addressed through CSC, it was important to understand the needs of the whole YA population in order to address the individual needs. The KAWA model emphasized the importance of addressing the whole system rather than just an individual self, therefore, helped guide my program development and implementation (Lim & Iwama, 2011). For my project, the river walls and bed included CSC and all the programs that they offered. For the river itself, the upstream, or the past, included an YAs life prior to a cancer diagnosis while the downstream, or the future, included life after a cancer diagnosis. The barriers or rocks that the YA population may face include decreased quality of life, lack of support, decreased mental health, increased stress, lack of education on available services, and feelings of loss. The driftwood, or resources that can be helpful or obstructive include attitude, personality, personal values, and time. The KAWA model has helped implement the goal of enabling and enhancing the life flow of each young adult by connecting them with others that are going through a similar experience (Lim & Iwama, 2011). Additionally, the lifespan frame of reference (FOR) helped guide my DCE. The lifespan FOR focused on the use of transitional tasks, establishing or restoring occupations, and adapting to changes (Cole & Tufano, 2008). For my project, I focused on restoring occupations that may be more difficult to participate in due to a cancer diagnosis. Also, I focused on educating clients on healthy ways to adapt to this life change and how to balance personal roles and routines related to self-care, stress management, and social wellness. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 9 Methods Needs Assessment CSC Indiana has offered many programs; however, these programs primarily included those aged 55+. CSC has adapted their programming to this age group and does very well with targeting the 55+ population. Although CSC Indiana has had young adults, aged 18-35, participate in programs in the past, in 2021, less than two percent of their participants fell within the YA 18-35 age range. During the needs assessment, it was determined that a program specifically for the YA population aged 18-35 would help serve a population that CSC has not directly created a program for before. In the past, CSC had not created a program specifically for the YA population and there were not any similar programs available for the YA population within the Indianapolis area. After collaborating with Lora and Hunter, we determined that I would create programming for the YA population aged 18-35. Marketing To market the YA Cancer Support Program, I collaborated closely with Lora and Hunter and CSCs marketing Lead, Karissa Rates. I took the lead on marketing the program and there were many different marketing strategies that were utilized. First, I created a poster that included a picture of younger adults, explained the program, and included prizes for the social event. Next, I created a document with contact information to the communities I wanted to reach within the YA population. I reached out to local colleges, hospitals, CSCs support group leaders, and local community organizations that may have YA cancer survivors, such as multiple YMCA Indianapolis locations, local breast cancer organizations, and the Leukemia and Lymphoma Society. Next, I utilized CSCs social media platforms (Facebook and Instagram) to market the YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 10 program and I shared these posts on my social media accounts, as well. These posts were advertised the week prior to the events and the day before the events. Lastly, all inquiries were forwarded to my email and I answered any questions about the program to those who were interested. Participants and Target Population The target population for the program included YA cancer survivors and YAs impacted by familial cancer. However, the participants in the educational session included 2 YA cancer survivors and the social event included 2 YA cancer survivors and 1 significant other. Only 1 participant had attended CSC programs in the past while the other had not. Program Design and Implementation The purpose of my DCE was to increase knowledge on various topics and provide a social opportunity to the YA population. Originally, I planned to host separate educational sessions and social events for YA cancer survivors and YAs impacted by familial cancer. However, since there were only 2 participants interested in attending the YAs impacted by familial cancer, I combined the educational sessions and social events. After the changes to the YA Cancer Support Program were made, I developed and led 1 educational session and 1 social event. I presented the virtual educational session on 03/09/2022 from an OT perspective covering self-care, stress management, and social wellness which supplemented an in-person social event. Since only 1 participant was able to attend the live zoom meeting, I adapted the presentation to be more of a discussion about her life and provided client-centered recommendations. The other 2 participants that could not come were provided with a YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 11 VoiceThread presentation of the information. For the social event, I gathered donations from various local businesses such as Chick-fil-A, Target, Indy Fuel tickets, and a few prizes CSC donated from a silent auction. Prior to the social event, I utilized CSCs food donation by gathering and preparing desired food items and for the participants to enjoy during the event. The social event took place at CSCs building on 03/25/2022. During the social event, participants were encouraged to ask questions about the educational session, share their cancer journey, and enjoy the night with trivia games and prizes. Program Evaluation and Dissemination For the project evaluation, I developed and administered a pre and post survey. I collaborated with Lora and Hunter on their standard registration and adapted my pre and post survey to align with their registration and feedback survey. The pre-survey included a participant information section focusing on demographics that CSC collects and another section with the PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a. The participant information section asks for demographic information including name, age, email, and if they are a young adult cancer survivor or young adult impacted by familial cancer. Also, this section specifically addresses if the dates and times for the events work for them and if they have other dates or times that may work better, food allergies, if they would like to receive more information about the programming that CSC offers, and a photo consent. All information within this section was utilized to help organize the events, get contact information, and collect information for CSC to report. Within the second section, the PROMIS Item Bank v2.0 Satisfaction with Social Roles and Activities Short Form 8a was utilized. This tool has a 5 point Likert scale ranging from Not at all to Very Much to measure satisfaction with performing ones usual social roles and activities. Since social wellness was established within YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 12 the literature to be impacted within the young adult population, this assessment identified social roles and activities that were negatively impacted due to a cancer diagnosis. The information from the PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a assessment was utilized to adapt the educational session by including intervention strategies to address the lower reported scores on the assessment. The post-survey was a summative assessment that included questions regarding understanding OT, self-care within a daily routine, and social wellness. Additionally, the post-survey included questions regarding satisfaction with the program, how the program could improve, and if participants were interested in attending future events. For dissemination of my DCE, I created an organized binder and presented it to Lora and Hunter. The binder included information on marketing the program, resources for the educational session and social event, results, references, and my scholarly report, poster, and presentation. When I presented the binder to Lora and Hunter, I reviewed all the information within the binder and gained feedback from them. Lastly, I adjusted the binder based on feedback so that CSC could easily access information on YA programming for future events. Results Pre-survey The pre-survey indicated that 100% of participants were YA cancer survivors from ages 18-33. The pre-survey indicated that 100% of participants were available for the educational session and in-person social event, however, 1 participant reported that they were not able to attend the social event due to being immunocompromised. The PROMIS Item Bank v2.0 Satisfaction with Social Roles and Activities Short Form 8a assessment determined that 66.7% YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 13 of participants reported being Not at all satisfied with their ability to do fun things with others, feel good about their ability to do things for their friends, their ability to do fun things for fun outside their home, and their ability to meet the needs of their friends. Additionally, 66.7% of participants reported being A little bit satisfied with their ability to do the work that is really important to them and their ability to meet the needs of their family. Refer to Figure 1 for more detailed results on The PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a. Post-survey The post-survey indicated that there were 2 YA participants and 1 YA family member or friend. All participants reported having a better understanding of what OT is, how OT can help in cancer survivorship, and having a better understanding of social wellness and how to incorporate social activities within their lives. Examples of what participants reported learning about OT and cancer survivorship include topics related to energy conservation and self-care participation. When asked about how they would include social activities within their lives, participants reported spending more time with family and friends and going to social events more frequently. Participants were asked to provide examples of what they learned, what was most helpful, and how the program could have been more helpful which can be referenced in Table 1. Participants reported that having more meeting times and having more participants would improve this program. The post-survey determined that all participants reported that they would be interested in attending future educational sessions and social connectedness events. Additionally, 66.7% of participants were interested in attending other programs offered by CSC Indiana. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 14 Discussion The current literature indicates that there are many unmet needs within the YA cancer population including decreased participation in daily activities, decreased social wellness, and negative impacts on psychosocial wellbeing (Baxter et al., 2017; Kim & Carver, 2019; Morris et al., 2018; Patterson et al., 2017; Spathis et al., 2015; Spathis et al., 2017). The YA Cancer Support Program addresses these unmet needs by providing a client-centered, educational session, and social event. The goal of the program was to increase knowledge on various subjects within the educational session and promote social participation and social wellness through the social event. According to the overall program evaluation results and the needs expressed from the YA population, the client-centered educational sessions and social events were essential in promoting overall well-being, independence, and social wellness within the YA population. More specifically, the educational session promoted learning in OT and cancer survivorship, self-care, and social wellness while the social event promoted social participation and social wellbeing. The feedback on the post-survey suggests that participants were, overall, satisfied with the program and would be interested in future YA programming. The results of this program indicate the positive impact OT can have within the community cancer survivorship setting which further advocates for OT within this emerging practice setting. Lastly, the YA Cancer Support Program adds value to CSC by providing programming for the YA population in central Indiana. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 15 Limitations There were some limitations within the YA Cancer Support Program development and implementation. First, there were limited participants within the program. Although there were 6 inquiries on participation within the program, only 3 filled out the pre-survey, 1 attended the educational session, and 2 attended the social event. A participants significant other joined the social event, making 3 participants present at the social event. Also, we decided to combine the YA cancer survivors and YAs impacted by familial cancer populations due to a lower participation. Another limitation included availability of participants for educational sessions and social events. A participant that was immunocompromised could not participate and another participant could not attend the live educational session due to work conflicts. To address this, I provided a VoiceThread of the educational session to participants who were not able to attend and offered to zoom in the immunocompromised participant that could not be in-person. Ultimately, this inconsistency in availability and participation limited how many events I could host. Implications for practice OT emphasizes the importance of engagement in meaningful occupations and its impact on overall well-being for all individuals (Baxter et al, 2017; Wallis et al., 2020). The YA Cancer Support Program encouraged participation in meaningful occupations through an educational session and promoted social participation through a social event. Within the educational session, I addressed OT within cancer survivorship and how to gain access to OT services, which directly advocated for OT for participants. Additionally, I was given many opportunities to advocate for OT at CSC within various CSC organization meetings. This not only gave me an opportunity to advocate for my program, but, also, allowed me to educate employees on OT and how OT can YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 16 help the cancer survivorship population. Lastly, I was able to advocate for OT within an emerging practice setting to fellow classmates through a weekly online forum and presentation. This helped increase awareness to future OT practitioners on how OT can help within this setting which can be helpful if they come across this setting within their future practice. Conclusion Overall, the results of the YA Cancer Support Program indicate positive outcomes that CSC can continue to provide to the YA population. Throughout my experience, I gained a new perspective on the unique role OT has within the community cancer survivorship setting and how to incorporate program development and implementation to a population with many unmet needs. Also, I was challenged with self-directed learning and given many opportunities to advocate for OT. Overall, my DCE and CSC was great, and I gained many new perspectives and skills that I will be able to carry over into my future practice. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 17 References Al Daken, L. I., & Ahmad, M. M. (2018). The implementation of mindfulnessbased interventions and educational interventions to support family caregivers of patients with cancer: A systematic review. Perspectives in Psychiatric Care, 54(3), 441452. https://doi.org/10.1111/ppc.12286 Aubin, S., Rosberger, Z., Hafez, N., Noory, M. R., Perez, S., Lehmann, S., ... & Kavan, P. (2019). Cancer!? I don't have time for that: impact of a psychosocial intervention for young adults with cancer. Journal of adolescent and young adult oncology, 8(2), 172189. https://doi.org/10.1089/jayao.2017.0101 Baxter, M. F., Newman, R., Longpre, S. M., & Polo, K. M. (2017). Occupational therapys role in cancer survivorship as a chronic condition. The American Journal of Occupational Therapy, 71(3), 7103090010P1-7103090010P7. https://doi.org/10.5014/ajot.2017.713001 Cancer Support Community (n.d.) Our Purpose. https://cancersupportindy.org/about-us/ourpurpose/ Center for Disease Control and Prevention. (2017). Cancer burden: Indiana. https://gis.cdc.gov/Cancer/USCS/DataViz.html Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Coss, D., Bass, J. D., & Lyons, K. D. (2022). Activity engagement after cancer in community-based survivors. Occupational Therapy In Health Care, 36(2), 141-151. https://doi.org/10.1080/07380577.2021.1923105 DionneOdom, J. N., Applebaum, A. J., Ornstein, K. A., Azuero, A., Warren, P. P., YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 18 Taylor, R.A., ... & Bakitas, M. A. (2018). Participation and interest in support services among family caregivers of older adults with cancer. Psychooncology, 27(3), 969-976. https://doi.org/10.1002/pon.4603 Lim, K.H. & Iwama, M.K. (2011). The Kawa (river) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (pp. 117-135). Edinburgh, Scotland: Elsevier Churchill Livingstone. Keegan, T. H., Lichtensztajn, D. Y., Kato, I., Kent, E. E., Wu, X. C., West, M. M., ... & Smith, A. W. (2012). Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. Journal of cancer survivorship, 6(3), 239-250. https://doi.org/10.1007/s11764-012-0219-9 Kim, Y., & Carver, C. S. (2019). Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship. Journal of Cancer Survivorship, 13(5), 749-758. https://doi.org/10.1007/s11764-019-00794-6 Metcalf, C. A., Arch, J. J., & Greer, J. A. (2017). Anxiety and its correlates among young adults with a history of parental cancer. Journal of psychosocial oncology, 35(5), 597613. https://doi.org/10.1080/07347332.2017.1307895 Morris, J., Turnbull, D., Preen, D., Zajac, I., & Martini, A. (2018). The psychological, social, and behavioral impact of a parent's cancer on adolescent and young adult offspring aged 1024 at time of diagnosis: A systematic review. Journal of adolescence, 65, 61-71. https://doi.org/10.1016/j.adolescence.2018.03.001 Patterson, P., McDonald, F. E. J., White, K. J., Walczak, A., & Butow, P. N. (2017). YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 19 Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer. Psychooncology, 26(9), 1285-1292. https://doi.org/10.1002/pon.4421 Penn, A., & Kuperberg, A. (2018). Psychosocial support in adolescents and young adults with cancer. The Cancer Journal, 24(6), 321-327. https://doi.org/10.1097/PPO.0000000000000339 Polo, K. M., & Smith, C. (2017). Taking our seat at the table: Community cancer survivorship. American Journal of Occupational Therapy, 71(2), 7102100010p17102100010p5. https://doi.org/10.5014/ajot.2017.020693 Spathis, A., Booth, S., Grove, S., Hatcher, H., Kuhn, I., & Barclay, S. (2015). Teenage and young adult cancer-related fatigue is prevalent, distressing, and neglected: it is time to intervene. A systematic literature review and narrative synthesis. Journal of adolescent and young adult oncology, 4(1), 3-17. https://doi.org/10.1089/jayao.2014.0023 Spathis, A., Hatcher, H., Booth, S., Gibson, F., Stone, P., Abbas, L., ... & Barclay, S. (2017).Cancer-related fatigue in adolescents and young adults after cancer treatment: persistent and poorly managed. Journal of adolescent and young adult oncology, 6(3), 489-493. https://doi.org/10.1089/jayao.2017.0037 Wallis, A., Meredith, P., & Stanley, M. (2020). Cancer care and occupational therapy: A scoping review. Australian Occupational Therapy Journal, 67(2), 172-194. https://doi.org/10.1111/1440-1630.12633 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 20 Appendix A Table 1 Post-survey Summative Response Survey Question Participant answers OT can help me do daily things without feeling tired or bad. I did not have OT but learned that OT can help with energy conservation. This would have been Please explain one thing you learned very helpful during treatment because I was always about occupational therapy (OT) tired and it was hard to get things done. OT would have helped my girlfriend with energy and self-care when she was too tired from treatment to do these things. I will go on more walks and take a break when it is Please explain how you will incorporate too much. self-care in your daily routine. journal 2-3 times a week and start going on more walks (2-3 times a week) as it gets nicer outside. I will hang out with my sister and friends more on Please explain how you will incorporate the weekend. social activities in your life. try to plan hanging out with at least 1 family member or friend a week. YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 21 Go to social events like this one more often To be with people that also survived cancer. to be part of a group What did you hope to gain or learn to get a bigger understanding of social-wellness form attending this program? and sleep gain friendship and a break from the rest of the world Everything What was most helpful about this having a chance to hang out with people who have program? been through similar life events having some background information over the things that are happening today Find more dates to meet How could this program have been More people next time and something outside when more helpful? it's warm Having better meeting times YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 22 Morgan was great! She was super accommodating Please feel welcome to share any other and it gave me an opportunity to not have to worry comments, questions, about cooking and just have a chance to relax recommendations, etc. here. Had a lot of fun at the game night and would come again Figure 1 PROMIS Item Bank v2.0 - Satisfaction with Social Roles and Activities Short Form 8a Results YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 23 Appendix B DCE and Project Weekly Planning Guide at CSC Week DCE Stage 1 Orientation 01/10/202201/14/2022 Weekly Goal 1. 2. 3. 4. Orientation Office schedule Program development DCE assignments Objectives Tasks Meet with Lora Hays and Hunter Stafford and review my weekly goals and project. Train on front desk duties. Set up meetings with Lora and Hunter for check-in and set up meeting with Katie Polo (faculty mentor) to discuss project. Review MOU with Lora and Hunter and make appropriate changes if needed. Date complete 01/14/2022 Create a weekly meeting document with updates/goals/questions/rem inders. Propose dates for activities/sessions for project. Determine which colleges/hospitals, get contact information, and form initial email. Work desk 1/11 1-4PM Finalize MOU 2 01/17/202201/21/2022 Screening/ Evaluation 1. 2. 3. Program development Office schedule DCE assignments Begin marketing program planning DCE forum post by 01/14 at 11:55PM Finalize dates for activities/courses Add to literature review Reach out to colleges/hospitals. Review needs assessment from OTD 611 Create poster/flyer for program. Attend weekly meeting with Lora and Hunter to discuss program. Work office desk 01/18 14PM Complete literature review/needs assessment DCE forum post by 01/18 at 11:55PM and respond to 3 by 01/21 at 11:55PM 01/21/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 3 01/24/202201/28/2022 Implementat ion 1. 2. 3. Program Development Office schedule DCE assignments Marketing the program Outcome measure Theory/Framework Draft Introduction 24 Create outcome measure for pre-post attendance to events. 01/28/2022 Meet with Katie for update on DCE. Attend weekly meeting with Lora and Hunter to discuss program. Work desk 1/25 1-4PM Review theory/framework for project Submit draft Intro by 01/28 at 11:55PM 4 01/31/202202/04/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Background draft DCE forum post by 01/25 at 11:55PM and respond to 3 by 01/28 at 11:55PM Finalize outcome measures. 02/04/2022 Attend weekly meeting with Lora and Hunter to discuss program. Work desk 2/1 1-4PM Submit draft of background by 2/4 at 11:55PM 5 02/07/202202/11/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Start on content for educational session Start reaching out for donations Project Design 6 02/14/202202/18/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Continue working on educational session content DCE forum post by 2/1 at 11:55PM and respond to 3 by 2/4 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. 02/11/2022 Work desk 2/8 1-4PM Submit Project Design by 2/11 at 11:55PM DCE forum post by 2/8 at 11:55PM and respond to 3 by 2/11 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Work desk 2/15 1-4PM 02/18/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 7 02/21/202202/25/2022 8 02/28/202203/04/2022 9 03/07/202203/11/2022 Implementat ion Implementat ion Implementat ion 1. 2. 3. 1. 2. 3. 1. 2. 3. Program development Office schedule DCE assignments Program development Office schedule DCE assignments Program development Office schedule DCE assignments Continue working on educational session content Combined both populations to be one educational session and one social event 25 DCE forum post by 2/15 at 11:55PM and respond to 3 by 2/18 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. 02/25/2022 Meet with Katie for update on DCE. Work desk 2/22 1-4PM Midterm Midterm evaluation by 2/25 at 11:55PM Continue working on educational session content DCE forum post by 2/22 at 11:55PM and respond to 3 by 2/25 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Collect all donations Work desk 3/1 1-4PM and 3/5 form 9-12 Finalize content for educational session by 3/8 DCE forum post by 3/1 at 11:55PM and respond to 3 by 3/4 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Methods section Work desk 3/8 1-4PM 03/04/2022 03/11/2022 Lead educational session on 3/9 Finalize Methods section based on Faculty Mentor feedback by 3/8 10 03/14/202203/18/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Start on planning for Social Connectedness Event: Trivia Night Create VT for participants that could not come to the virtual educational session Outcomes DCE forum post by 3/8 at 11:55PM and respond to 3 by 3/11 at 11:55PM Attend weekly meeting with Lora and Hunter discuss program. Work desk 3/15 1-4PM Gather prize items and make categories Meet with Katie for update on DCE. 03/18/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 26 Send VT to participants by 3/18 Draft of Outcomes for faculty mentor due 3/18 11 03/21/202203/25/2022 Implementat ion 1. 2. 3. Program development Office schedule DCE assignments Finalize everything for Social Connectedness Event: Trivia Night by 3/24 Set up virtual zoom meeting for participants Dissemination Plan 12 03/28/202204/01/2022 13 04/04/202204/08/2022 14 04/11/202204/15/2022 Implementat ion Discontinuat ion Disseminatio n 1. 2. 3. 1. 2. 1. 2. Program development Office schedule DCE assignments Program development DCE assignments Program development DCE assignments Start on dissemination binder DCE forum post by 3/15 at 11:55PM and respond to 3 by 3/18 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Dissemination Plan due 3/25 Work desk 3/22 1-4PM Lead virtual zoom meeting on 3/22 Lead Social Connectedness Event: Trivia Night on 3/25 DCE forum post by 3/22 at 11:55PM and respond to 3 by 3/25 at 11:55PM Attend weekly meeting with Lora and Hunter to discuss program. Work on results/discussion section in paper Work desk 3/29 1-4PM Outcomes DCE forum post by 3/29 at 11:55PM and respond to 3 by 4/1 at 11:55PM Attend meeting for final and turning in dissemination binder on 4/7 Continue working on dissemination binder Outcomes Complete binder Complete drafts Send final paper to Katie for edits 03/25/2022 04/01/2022 Begin Outcomes section 04/08/2022 Finalize outcomes section based on faculty mentor feedback DCE forum post by 4/5 at 11:55PM and respond to 3 by 4/8 at 11:55PM Attend weekly meeting with Lora and Hunter to get feedback on dissemination binder. Make final edits to paper and dissemination binder. 04/15/2022 YA PROGRAM IN COMMUNITY CANCER SURVIVORSHIP 27 Final evaluation due by 4/15 Draft of abstract, summary, and conclusion section and abstract due 4/15 DCE forum post by 4/12 at 11:55PM and respond to 3 by 4/15 at 11:55PM  ...

... 1 Program Development and Advocacy for Addressing Sex and Intimacy with Cancer Survivors Hailey E. Beneker April 27, 2022 A capstone project submitted in partial fulfillment for the requirements of the Doctor of Occupational Therapy degree from the University of Indianapolis, School of Occupational Therapy. Under the direction of the faculty capstone advisor: Dr. Katie Polo DHS, OTR, CLT-LANA 2 Abstract Objective: The purpose of this project was to educate cancer survivors, their partners, and healthcare professionals about the benefits of occupational therapy, specifically regarding sex and intimacy. A secondary objective was to advocate for the use of occupational therapy in community cancer care. Methods: Diagnosis-specific education sessions about occupational therapy and sex and intimacy were provided during existing support groups to survivors. Additionally, one education session was provided to partners of individuals living with cancer, and one to healthcare professionals. Formative and summative assessments in the form of pre- and post-surveys were used to measure knowledge of occupational therapy and success of the program. Results: The total sample size was 32 participants (N = 32). After the group sessions, 93% of participants (n = 13) stated they did understand occupational therapys role in cancer care. When partners and healthcare professionals if they understood the role of occupational therapy on the post-survey, 100% (n = 1) of partners and 100% (n = 2) of healthcare professionals stated that they did. When asked if the session met participants expectations for group sessions 71% (n = 10) said yes. When asking the partner group and the healthcare professional group the same question, 0% (n = 0) and 100% (n = 2) said yes, respectively. Conclusion: Patient, partner, and provider education on occupational therapy and sex and intimacy is needed in cancer care. Survivors, partners, and providers found this education program to be beneficial overall. 3 Program Development and Advocacy for Addressing Sex and Intimacy with Cancer Survivors Introduction This doctoral capstone experience (DCE) and project was completed at Cancer Support Community of Central Indiana (CSC), a non-profit organization in Indianapolis that provides free services to all individuals affected by cancer. During a needs assessment with Lora Hays, the executive vice president of CSC, it was clear that there was a need for a sex and intimacy program for individuals with cancer. Lora Hays expressed a vision for population-specific education on sex and intimacy due to the differences between diagnoses. Because occupational therapy (OT) places a large emphasis on client-centeredness, this author decided to do program planning for population-specific education sessions regarding sex and intimacy at CSC. The diagnoses that CSC serves includes 45 percent breast cancer survivors, eight percent colon cancer survivors, eight percent lung cancer survivors, eight percent prostate survivors, four percent ovarian cancer survivors, four percent pancreas cancer survivors, and four percent blood cancer survivors. I had the opportunity to participate in advocacy at CSC due to the topic for this DCE. An education session was tailored to healthcare providers and emphasized facilitating discussions about sex and intimacy more frequently. This author also advocated for CSC to provide educational information and resources on sex and intimacy to their population. This paper will contain background information on sex and intimacy as it relates to cancer survivorship, the theory and model that was the basis for this DCE, the project design and implementation, project outcomes, and implications for future practice. 4 Background According to the National Cancer Institute (2020), there were about 16.9 million cancer survivors in the United States at the beginning of 2019, with an estimated 22.2 million by 2030. The number of cancer survivors in the United States is increasing, and healthcare professionals should focus on reducing their functional deficits and improving their quality of life. Cancer has many side effects that can affect ones quality of life and ability to participate in occupations. Galbraith et al. (2012) stated that the most impactful side effect that cancer survivors reported was sexual dysfunction. Sex is an activity of daily living (ADL) that OT should address. Although sexual dysfunction is a largely reported issue among cancer survivors, it is often overlooked by healthcare professionals including therapists. The aims of this project were to educate cancer survivors on how cancer and treatment can affect sex and intimacy for different populations, educate cancer survivors on techniques to manage side effects to participate in sex and intimacy, and educate healthcare providers on the importance of OT in cancer care and the importance of addressing sex and intimacy with cancer survivors. In the past CSC has provided general information on sex and intimacy to a wide population. Stakeholders at CSC made it clear that there was a need for population-specific education because of the differences in experiences and side effects between gender and diagnosis. Not only did the stakeholders at CSC agree that there was a need for this type of program, but the literature supported the program. Many individuals with cancer have issues related to sexual dysfunction. McLeod and Hamilton (2013) stated that roughly half of cancer survivors in their study of case examples report sexual dysfunction. Similarly, in a study done by Galbraith et al. (2012), survivors of prostate cancer reported that sexual dysfunction impacted them more than any other side-effect 5 related to their cancer. These two studies show a need for addressing sex and intimacy with cancer survivors. During the development of this program, it was important to know what side effects cancer survivors reported interfering with their ability to participate in sex and intimacy. Cancer survivors have reported many sexual issues, including hot flashes, vaginal dryness, atrophic vaginitis, negative body image, fatigue, sleep difficulty, pain, loss of range of motion (ROM), short-term memory loss, difficulty with concentration and motivation, decreased libido, and more (Dizon et al., 2014; Kessing et al., 2016; Paterson et al., 2016). Additionally, it was important to understand that side effects, experiences, and concerns varied by population in terms of diagnosis. For example, Crowley et al. (2015) reported that prostate cancer survivors were concerned with physical changes to their body and their ability to give and receive pleasure, whereas breast cancer survivors were concerned with if they were attractive, if their bodies would still work sexually, concerned with pain during intercourse, and if they would be able to experience pleasure (Crowley et al., 2015). A survey was sent to participants of each education session prior to the session date to help understand specific problems and questions that each group had in order to remain client-centered. Along with physical challenges, cancer survivors can experience barriers related to mental health. Sporn et al. (2015) reported that patients in their study experienced high rates of depression (65%) and anxiety (59%), which research has shown affects sexual satisfaction. Likewise, Baxter et al. (2017) reported that anxiety and depression impact a survivors ability to engage in occupations such as sex. Therefore it is important to include information about mental health in population-specific education sessions. Occupational therapists address functional deficits to enable clients to engage in ADLs, instrumental activities of daily living, rest and sleep, work, education, play, leisure, and social 6 participation. Although occupational therapists can address functional deficits and improve quality of life, they are frequently underutilized in cancer care (Polo & Smith, 2017). Hwang et al. (2015) discovered that within their study, only four and a half percent of participants received OT during their first-year post-treatment, resulting in lowered quality of life. Occupational therapists can address functional deficits that cancer survivors experience and improve their quality of life, however, they are not given an opportunity to do so. Sex and intimacy are frequently unaddressed in healthcare settings despite many survivors reporting sexual dysfunction and the impact this ADL has on quality of life (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). Because sex is an ADL, occupational therapists are uniquely qualified to address it with individuals who experience illness or disability that decreases their participation in it. In a survey by Sporn et al. (2015), 41 percent of patients reported that they wanted their oncologist to ask about sexual health and 58 percent reported wanting their primary care physician (PCP) to ask about sexual health. However, over 90 percent of participants in the survey reported that their oncologist hardly ever initiated a discussion about sexual health and concerns (Sporn et al., 2015). Quality of life for cancer survivors can be greatly impacted when OT services are underutilized and the topic sex and sexual dysfunction is avoided by healthcare professionals. One education session was targeted at healthcare providers to educate them on OTs role in cancer care and the importance of addressing sex with patients. The survey sent to participants prior to the session date also asked participants if they have ever received OT services and if a healthcare provider had ever discussed sex and sexual side effects of cancer and treatment with them. This information helps to understand if OT is truly being underutilized in cancer care and if healthcare providers are addressing sex with their patients. 7 Theory and Model The KAWA model guided this DCE project (Lim & Iwama, 2011). In this model, life flows like a river. There can be impediments in the flow of the river that is life, and it is an occupational therapists job to remove the impediments and restore function.Rocks are things that limit ones life flow (Cole & Tufano, 2008). For the population at CSC, rocks might included side effects from treatment, the stigma surrounding sex and intimacy, and poor quality of life. Driftwood refers to the attributes and resources of the client that can either be helpful or obstructive (Cole & Tufano, 2008). Examples of driftwood of individuals at CSC might include fear of asking about sex and intimacy, personal values, knowledge, personality, and confidence. By using my program to remove rocks and use driftwood to my advantage, I can work to address sex and intimacy with cancer survivors at CSC and improve their quality of life. The Theory of Andragogy also guided this DCE project (Knowles, 1978). This theory helped plan and implement my program because it focuses on adult learning, and my program focused on education for individuals with cancer, all of which were adults. The Theory of Andragogy states that adult learners retain information relevant to them (Knowles, 1978). For this reason, I offered the program to all participants at CSC and invited those who were interested to attend. By doing this, only those who found the information relevant to themselves, attended sessions, likely leading to better outcomes. I also asked what questions individuals had prior to their session so that I could tailor the information to their personal experiences. By tailoring the information provided in my sessions, I was able to ensure that the information provided was relevant and meaningful for the individuals attending the session. Project Description 8 Project Design This project was developed to help meet the needs of cancer survivors at CSC and partnering hospitals. There is a gap in care due to healthcare providers not referring their patients to OT and not addressing sex and intimacy with their patient, despite the impact this ADL has on quality of life. This program aimed to educate cancer survivors about how sex and intimacy can be affected by cancer and cancer treatment, ways to continue participating in sex and intimacy, and ways to advocate for themselves by requesting a referral to OT or another appropriate provider to address sex and intimacy. The literature indicated that many cancer survivors experience sexual dysfunction, and it is not addressed, thus affecting their quality of life (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). In conjunction with the stakeholders at CSC, this author chose to offer diagnosis-specific education sessions during the time of already established support groups at CSC. One education session each was offered to the Womens Group, Breast Group, Mens Group, and Pink Youth Group during that groups pre-established meeting time. This ensured that diagnosis-specific information on sex and intimacy was being shared with the correct group. Meeting during the support group increased the likelihood of individuals attending the sessions because they likely already had this time set aside. Additionally, a group was created for partners of individuals with cancer and healthcare workers. The partner group was created because the literature indicates that partners of cancer survivors experience changes in participation in sex and should also be included in therapy (Ghizzani et al., 2018). The healthcare provider group was created to advocate for OTs role in cancer care, and the importance of discussing sex and intimacy with cancer survivors. Marketing strategies included distributing flyers to individuals at CSC via 9 email, support group leaders distributing flyers to their group, and counseling interns and other group leaders recommending the education sessions to any client they believed might benefit. To measure the success of the program, I used formative assessments in the form of selfcreated pre- and post-surveys to measure knowledge of OT. I also use summative assessments to measure the success of the program during the DCE. Pre- and post-surveys were created for group sessions, the partner session, and the healthcare professional session. No standardized assessments were used due to the limited availability of tools that align with this specific program. Implementation There were four group sessions: Womens Group, Breast Group, Mens Group, and Pink Youth. Womens Group was a group for women of any age with any type of cancer, Breast Group was for older breast cancer survivors, Mens Group was for men of all ages with any type of cancer, and Pink Youth was for young adult women, ages 18 to 40, with breast cancer. Participants diagnoses included breast cancer, prostate cancer, lymphoma, colorectal cancer, and ovarian cancer. Additionally, one group for partners of cancer survivors and one group for healthcare professionals were held. Group sessions were held virtually during each groups designated support group time. If an individual was not part of a support group, they were invited to attend the group that best fit their diagnosis. Each session lasted between 30-45 minutes and questions were accepted at the end. Pre-surveys were distributed to interested participants two days prior to the session in an introductory email. Post-surveys were distributed one day after the session to those who attended. Getting people to attend sessions was difficult due to the sensitive nature of the topic and stigma surrounding it. The sessions were marketed through support groups, counselors, and other group leaders. Creating and implementing this program during the 10 COVID-19 pandemic also presented itself as a challenge because many people do not like to meet on a virtual platform and/or do not understand how to use the virtual platform. Project Outcomes I used formative assessments in the form of pre- and post-surveys to measure knowledge of OT and success of the program during the DCE. Pre- and post-surveys were created for support group sessions, the partner session, and the healthcare professional session. It was necessary to create three different pre- and post- surveys because the target population was different for support groups, the partner group, and the healthcare provider group, therefore the information provided and gathered differed. The use of pre- and post-surveys enabled me to see a clear change in participants knowledge of OT and how cancer and treatment can affect sex and intimacy. Summative assessments were used for all groups to allow me to analyze feedback and make continuous quality improvements throughout the program. There were four participants present for Womens Group, eight for Breast Group, eight for Mens Group, and two for Pink Youth. There were also five participants present for the partner group and five for the healthcare professional group. The total sample size of participants that attended one of my sessions was 32 participants (N = 32). Pre- and post-surveys were sent to all participants but, despite email reminders, not all participants completed one or both surveys. The total sample size for the group sessions was 22 participants (n = 22), however only 14 of the 22 (63%) participants completed the post-survey. There were five participants present for the partner group (n = 5), all of which completed the pre-survey, however only one completed the post-survey. There were five participants present for the healthcare group (n = 5), all of which completed the pre-survey, however only two completed the post-survey. When analyzing the pre-survey for group sessions, it was clear to me that many participants did not understand OTs 11 role in cancer care and almost no one had ever been asked about sex and intimacy from a healthcare professional. In fact, only 32% of participants (n = 7) stated that they did understand OTs role in cancer care and 77% (n = 17) had never been asked about sex and intimacy by a healthcare professional. These numbers support Polo and Smiths (2017) statement that OT is underutilized in cancer care and the idea that healthcare professionals are not addressing sex and intimacy as they should (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). After the group sessions, 93% of participants (n = 13) stated they did understand OTs role in cancer care, showing that my program was beneficial in improving knowledge of OT. When asked if partners and healthcare professionals understood the role of OT on the pre-survey, 40% (n = 2) and 60% (n = 3) of participants stated that they did, respectively. When asked the same question on the post-survey, 100% (n = 1) of partners and 100% (n = 2) of healthcare professionals stated that they did understand the role of OT. The post-survey used multiple choice and short answer questions to explore participants satisfaction with the session. When asked if the session met participants expectations for group sessions 71% (n = 10) said yes. When asking the partner group and the healthcare professional group the same question, 0% (n = 0) and 100% (n = 2) said yes, respectively. Participants from the group sessions reported that the most beneficial parts of their sessions included the speaker being open and frank, talking about emotional effects of cancer, discussing advocating for oneself, the conversational nature of the session, and normalizing the topic of sex. Participants from the partner group reported that they found the most beneficial part of the group to be getting to hear about what OT can do for this issue. Healthcare professionals reported that the most beneficial part of their group was learning the difference between PT and OT and receiving information on how OT can address sex and intimacy. 12 Suggestions for change from the group sessions included keeping in mind that not everyone has a partner, explaining how biochemistry is changed with hormone therapy and how that affects sex, more discussion of body image, more detailed information on the use of assistive devices, and including more information about specific medications and their side effects. Because I collected this information after each session throughout my program, I was able to make immediate changes to the sessions prior to the next session based on feedback. For example, after the Breast Group session, many participants reported that they felt I assumed they all had a partner, which was not the case. Consequently, for the Mens Group, I made sure to talk about sex and intimacy for a single man, as well as those who were dating or in relationships. Suggestions for change from the partner session included having a doctor co-speak to explain sexual dysfunction in more detail. Suggestions for change from the healthcare provider session included providing more information on how to refer a patient to OT and where a patient should be referred to. Because I only ran these sessions once, I can make note of these suggestions for any future sessions. When asked if they would recommend the sessions to a friend, 57% (n = 8) of group participants said yes, 100% (n = 1) of partner group participants said yes, and 100% (n = 2) of healthcare professional group participants said yes. All of the information collected throughout this program has enabled me to make needed changes and improvements, as well as provided me with the information to improve the program should it continue. Summary The number of individuals affected by cancer in the United States is growing every year, affecting the functional abilities and quality of life for those living with cancer (National Cancer Institute, 2020). Occupational therapists are trained to address functional deficits, therefore improving quality of life, however they are underutilized in cancer care (Polo & Smith, 2017). 13 Despite sex being an ADL and sexual dysfunction affecting many cancer survivors and their quality of life, healthcare providers tend to leave sex and intimacy unaddressed when working with cancer survivors (Bober et al., 2019; McLeod & Hamilton, 2013; Vermeer et al., 2015). This statement was supported by the results of my pre-survey in which 77% (n = 17) of participants stated that they had never been asked about sex and intimacy by a healthcare professional. CSC offers support services to cancer survivors free of charge and because if does not have a regular sex and intimacy program or group, this made it a great place for this program. Providing diagnosis-specific education to already established support groups at CSC made it easier to get relevant information about sex and intimacy to those who wanted it. Because CSC had support groups for women with cancer, men with cancer, breast cancer, and young adults with breast cancer, I targeted these groups and provided them with education about what OT does, how sex and intimacy can be impaired, how OT can address sex and intimacy, and how to advocate for oneself. There is a need to include partners in therapy; therefore, I also offered a partner group to educate individuals about how their relationships might change when their partner has cancer (Kessing et al., 2016). Providing a healthcare professional session served to not only educate healthcare professionals on the role of OT in cancer care, but also advocate for referring to OT and addressing sex and intimacy with patients. Overall, this program was a success with improvements in knowledge across all groups and high satisfaction across all groups. Future suggestions to improve the program included, adding more content about dating and communicating with potential partners, more detailed discussion on body image changes and how to manage them, and more detailed information on the use of assistive devices. To improve this program in the future, the person implementing the 14 program should add more information, such as exercises to improve body image, create a list of adaptive devices and prices, create a list of suppliers for adaptive devices, and do more research on dating with cancer. Additionally, the future person implementing this program should personally reach out to support group leaders about inviting their participants, consider requesting a list of support group members to contact personally, make presentations more interactive, and add activities and exercises to presentations. This program can be sustained even after my leaving CSC by encouraging CSC to continue taking DCE students and suggesting a sex and intimacy program for their project. By leaving all of the materials I have developed, research, outcomes, and my scholarly report in a binder with CSC before I leave, others at CSC could replicate or improve my program. Conclusions Throughout this project, I have improved my skills in program development and advocacy. Through experience, I learned about developing and utilizing surveys to measure change and gather feedback. Cancer survivors at CSC reported many sexual side effects of treatment and were happy that they were being given an opportunity to learn about those effects and how to manage them. Healthcare professionals that attended my session were overall happy with the information and learned more detailed information about what OT can do in cancer care. CSC benefited from my program because I was able to provide an education service to their population that they did not already have. There was a gap in CSCs services that I was able to help fill. Because of the information I provided during my education sessions, cancer survivors at CSC are more knowledgeable about how OT can help them, more understanding of the sexual side effects they might experience and how OT can address them, and how to advocate for themselves. The program and its results were presented to the Vice President and 15 Program Director of CSC at the conclusion of the program. Both individuals were happy with the program and program results and look forward to offering similar services in the future. The leadership at CSC understands the importance of addressing sex and intimacy with their participants and will continue to take opportunities to do so in the future. 16 References Baxter, M. F., Newman, R., Longpre, S., & Polo, K. M. (2017). Occupational therapys role in cancer survivorship as a chronic condition. The American Journal of Occupational Therapy, 71(3), 1-7. https://doi.org/10.5014/ajot.2017.713001 Bober, S. L., Michaud, A. L., & Recklitia, C. J. (2019). Finding sexual health aids after cancer: Are cancer centers supporting survivors needs? Journal of Cancer Survivorship, 13, 224-230. https://doi.org/10.1007/s11764-019-00744-2 Cole, M. & Tufano, R. (2008). Applied theories in occupational therapy: A practical approach. Thorofare, N.J.: SLACK Inc. Crowley, S. A., Foley, S. M., Wittmann, D., Jagielski, C. H., Dunn, R. L., Clark, P. M., Griggs, J. J., Peterson, C., Leonard, M., An, L. C., Wei, J. T., Montie, J. E., & Janz, N. K. (2016). Sexual health concerns among cancer survivors: Testing a novel information-need measure among breast and prostate cancer patients. Journal of Cancer Education, 31, 588-594. DOI 10.1007/s13187-015-0865-5 Dizon, D. S., Suzin, D., & McIlvenna, S. (2014). Sexual health as a survivorship issue for female cancer survivors. The Oncologist, 19, 202-210. doi: 10.1634/theoncologist.2013-0302 Galbraith, M. E., Hays, L., & Tanner, T. (2012). What men say about surviving prostate cancer: Complexities represented in a decade of comments. Clinical Journal of Oncology Nursing, 16(1), 65-72. doi: 10.1188/12.CJON.65-72 Ghizzani, A., Bruni, S., & Luisi, S. (2018). The sex life of women surviving breast cancer. Gynecological Endocrinology, 34(10), 821-825. DOI: 10.1080/09513590.2018.1467401 Hwang, E. J., Lokietz, N. C., Lozano, R. L., & Parke, M. A. (2015). Functional deficits and 17 quality of life among cancer survivors: Implications for occupational therapy in cancer survivorship care. American Journal of Occupational Therapy, 69(6), https://doi.org/10.5014/ajot.2015.015974 Kessing, S., Rosenwax, L., & McNamara, B. (2016). A dyadic approach to understanding the impact of breast cancer on relationships between partners during early survivorship. BMC Womens Health, 16(57), 1-14. DOI 10.1186/s12905-016-0337-z Knowles M. S. (1978). Andragogy: Adult learning theory in perspective. Adult and Student Learning, 5(3), 9-20. doi:10.1177/009155217800500302 Lim, K.H. & Iwama, M.K. (2011). The Kawa (river) model. In E. Duncan (Ed.), Foundations for practice in occupational therapy (pp. 117-135). Edinburgh, Scotland: Elsevier Churchill Livingstone. McLeod, D. & Hamilton, J. (2013). Sex talk and cancer: Who is asking? Canadian Oncology Nursing Journal, 23(3), 197-201. doi:10.5737/1181912x233197201 National Cancer Institute. (2020, September 25). Cancer statistics. https://www.cancer.gov/about-cancer/understanding/statistics Paterson, C. L., Lengacher, C. A., Donovan, K. A., Kip, K. E., & Tofthagen, C. S. (2016). Body image in young breast cancer survivors. Cancer Nursing, 39(1), E39-E58. DOI: 10.1097/NCC.0000000000000251 Polo, K. M. & Smith, C. (2017). Taking our seat at the table: Community cancer survivorship. American Journal of Occupational Therapy, 71(2). https://doi.org/10.5014/ajot.2015.015974 Sporn, N. J., Smith, K. B., Pirl, W. F., Lennes, I. T., Hyland, K. A., & Park, E. R. (2015). Sexual 18 health communication between cancer survivors and providers: How frequently does it occur and which providers are preferred? Psychology-Oncology, 24(9), 1167-1173. doi: 10.1002/pon.3736 Vermeer, W. M., Bakker, R. M., Kenter, G. G., de Kroon, C. D., Stiggelbout, A. M., & ter Kuile, M. M. (2015). Sexual issues among cervical cancer survivors: How can we help women seek help? Psycho-Oncology, 24(4), 458-464. DOI: 10.1002/pon.3663 19 Appendix A DCE Weekly Planning Guide This table is a weekly planning guide that I developed at the start of my project to help guide me from week to week. I followed this weekly planning guide and made some adjustments as needed. Week DCE Stage (orientation, screening/evaluation, implementation, discontinuation, dissemination) 1 Orientation Screening/Evaluation Weekly Goal 1) Complete orientation by the end of the week. 2)Complete needs assessment with site mentors by the end of the week. 3)Review literature to understand need for education/program. Objectives Tasks Date complete Meet with site mentors to discuss schedule and project. Complete orientation of the building. Confirm orientation dates. 1/10 Discuss virtual work days (3 days/week). Review literature Complete orientation of building Finalize and confirm MOU. Develop questions to ask mentors. Set up recurring meetings with faculty mentor. Begin working on project materials. 1/12 1/12 1/10 1/12 1/10 20 2 Screening/Evaluation 1)Continue to review literature. 2)Continue working on project materials (education presentations). 3)Start developing evaluation tools for project. Complete breast cancer and partner presentations. Review literature of program evaluation. Review literature related to sex and intimacy and breast cancer. Review literature discussing sex and intimacy for partners of individuals with cancer. Review evaluation literature. Choose type of evaluation. Develop outcome measures. 21 3 Screening/Evaluation 1)Develop mens group presentation by the end of the week. 2)Develop Pink Youth presentation by the end of the week. 3)Continue to develop outcome measures. 4 Implementation Screening/Evaluation 1)Complete womens group session on Thursday 2/3) 2)Email all women participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. Work on mens group presentation on Monday and Tuesday. Create PowerPoint s for groups. Work on Pink Youth presentation on Wednesday and Thursday. Wrap up outcome measure and get it approved by mentor. Finalize outcome measures on Friday. Get a list of women interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Determine outcome measure format (phone call, paper, online). Talk to site mentor about obtaining participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. 22 5 Implementation Screening/Evaluation 1)Complete breast cancer group session on Saturday 2/12) 2)Email all women participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 6 Screening/Evaluation 1)Begin analyzing data. 2)Continue to review literature for new information. 3)Develop education post for Facebook page. Get a list of women interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Ensure all data has been entered into necessary spreadsheets. Doublecheck spreadsheet s. Meet with faculty mentor to discuss data and a plan for analyzing/interpretin g it. Enter any missing data. Review new literature. Set up meeting with faculty mentor to discuss plan for data. Continue to read literature. Incorporat e facts and figures into infographic for Facebook. 23 7 Implementation Screening/Evaluation 1)Complete mens group session on Thursday 2/24) 2)Email all men participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 8 Screening/Evaluation 1)Continue analyzing data. Add new data to spreadsheets. 2)Continue to review literature for new information. 3)Create education post for Facebook page. Get a list of men interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Ensure all data has been entered into necessary spreadsheets. Doublecheck spreadsheet s. Meet with faculty mentor to discuss data and a plan for analyzing/interpretin g it. Enter any missing data. Set up meeting with faculty mentor to discuss plan for data. Continue to read literature. Incorporat e facts and figures into infographic for Facebook. 24 9 Implementation Screening/Evaluation 1)Complete partner group session on Saturday 3/12) 2)Email all partners participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 10 Screening/Evaluation 1)Continue analyzing data. Add new data to spreadsheets. 2)Continue to review literature for new information. 3)Create education post for Facebook page. Get a list of partners interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Ensure all data has been entered into necessary spreadsheets. Doublecheck spreadsheet s. Meet with faculty mentor to discuss data and a plan for analyzing/interpretin g it. Enter any missing data. Set up meeting with faculty mentor to discuss plan for data. Continue to read literature. Incorporat e facts and figures into infographic for Facebook. 25 11 Implementation Screening/Evaluation Discontinuation 1)Complete Pink Youth group session on Saturday 3/12) 2)Email all young women participating in group to administer survey and collect information. 3)Distribute evaluation measure to participants. 12 Dissemination Get a list of young women interested in participating in group. Contact all interested participants and gather necessary information. Follow up with participants after session. 1)Work on DCE VoiceThread. Complete first draft of DCE paper. 2)Work on DCE paper. Complete first draft of DCE VoiceThread. 3)Work on DCE poster. Complete first draft of DCE poster. Obtain participant list. Implement education session. Follow up with participant s. Log all informatio n into necessary spreadsheet s. Combine all drafted sections for paper. Record VoiceThrea d. Pull informatio n from paper to add to DCE poster. 26 13 Dissemination 1)Complete final draft of DCE paper, poster, and VoiceThread. Review changes to final materials. Make suggested changes. Meet with faculty mentor. Meet with site mentor. Confirm final disseminati on date. 14 Dissemination 1)Present DCE project to board at CSC on Tuesday 4/12. Confirm date with site mentor. Meet with site mentor. Confirm meeting place for dissemination. Decide on in-person or virtual format. Doctoral Capstone Experience and Project  ...

... Running Head: OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 1 Use of Occupation-Based Programs to Decrease Distress and Increase Independence and Well-Being in Cancer Patients Thomas Jacocks, OTS 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: Beth Ann Walker, Ph.D., MS, OTR, FAOTA OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS Design and Implementation of Virtual Occupation-Based Programs to Increase Health and Well-Being of Cancer Survivors Thomas Jacocks, OTS OTD 612: Doctoral Capstone Planning Dr. Beth Ann Walker University of Indianapolis 2 OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 3 ABSTRACT OBJECTIVE: Reintegrating back to ones life after a cancer diagnosis can be difficult for a lot of reasons. Cancer patients should receive an ample amount of services, support, and opportunities to re-engage in their previous lifestyles. Therefore, productive and occupationbased programs should be included in their rehabilitation and recovery process. Cancer Support Community (CSC) of Central Indiana has been providing programs for cancer patients for over 20 years, and there are many opportunities to add to the growing list of programs that are offered for this population. METHODS: To incorporate the varying needs of participants, a needs assessment was developed and a program survey was sent out to gauge interest in potential programs. Previous knowledge about programs, the population, and gaps in services assisted in creating a comprehensive list of potential programs for regular members. Ultimately, the feedback from the program survey and knowledge of occupational performance and independence spurred the creation of three occupation-based programs. RESULTS: The three occupation-based programs that were selected were Building Strength and Endurance Program, Home Organization and Downsizing Educational Series, and Cooking Class. These programs took place on a weekly to biweekly basis and lasted for one hour. The occupation-based programs appeared to be beneficial for cancer patients in terms of occupational engagement and independence. 10 out of 11 participants who completed the program evaluation survey reported the programs as Moderately to Extremely useful and informative for daily activities and overall well-being. CONCLUSION: Individuals served through the Cancer Support Community of Central Indiana may benefit from regular participation in occupation-based programming aimed to decrease distress levels in cancer patients and foster creativity in this period of their lives. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 4 Use of Occupation-Based Programs to Decrease Distress and Increase Independence and Well-Being in Cancer Patients In 2020, there were an estimated 1,806,590 new cases of cancer within the United States and over 600,000 people died from the disease (National Cancer Institute, 2020). As of January 2019, there were an estimated 16.9 million cancer survivors with that number projected to increase to 22.2 million by 2030 (National Cancer Institute, 2020). Although there are several different treatments for cancer, the type of treatment received depends on the type of cancer and how advanced it is. The common treatment types are chemotherapy, immunotherapy, radiation therapy, hormone therapy, stem cell transplant, surgery, and targeted therapy (National Cancer Institute, 2020). These popular forms of treatment lead to widespread side effects including cancer-related fatigue, chemo-brain (memory or concentration problems), muscle weakness, appetite loss, pain, neuropathy, and endocrine, digestive, muscular immune, and nervous system deficiencies (National Cancer Institute, 2020; Sada et al., 2021). Cancer survivors often have difficulty maintaining adequate levels of physical activity, decreasing the fatigue and weakness associated with treatment and medication side effects, and maintaining independence during meaningful occupations (Sada et al., 2021; Sammut et al., 2016). Quality of Life The survival period of cancer survivors has continuously increased and with it the physical and psychological symptoms that negatively affect the quality of life (QoL) (Kim & Yoon, 2021). Since cancer survivors have, on average, a lower QoL compared to healthy individuals and other individuals with chronic diseases, continued focus and prioritization of QoL and health problems is crucial for this population (Kim & Yoon, 2021). The experience of a cancer diagnosis and its treatment diminishes an individuals physical capabilities and disrupts OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 5 the psychological, spiritual, and social well-being (Novakov et al., 2021). Adequate social support is essential when dealing with cancer diagnoses and various forms of oncological treatment (Huang & Hsu, 2013). Some studies have found that social support was related to better QoL and decreased symptoms of depression while elevating overall QoL (Huang & 2013). Independence Chemotherapy and radiation treatment in cancer patients causes cancer-related fatigue (CRF) which affects the level of independence during activities of daily living (ADLs) (Werdani, 2018). The complex nature of CRF and the heightened levels of dependence experienced by the patient leads to increased stress levels for both the patient and caregivers (Werdani, 2018). According to Diaz et al. (2008), 58.3% of patients experience limitations while performing self-care actions including bathing, dressing, or grooming. Cancer survivors perceive fatigue as the highest impacting symptom on daily living and report that it negatively affects their emotional and social areas as well (Diaz et al., 2008). Mental Health Cancer survivors have been found to experience mental, physical, and economic difficulties and social role confusion during treatment following the initial diagnosis (Edwards & Greeff, 2017). Cancer survivors may experience physical and cognitive impairments, anxiety, and fear of cancer recurrence even after the completion of recovery (Stanton & Bower, 2015). Around 50% of patients with cancer present great resilience at the time of diagnosis, treatment, and thereafter (Anderson et al., 2014). For the other half of individuals with cancer, they will be vulnerable to later distress after diagnosis and even through remission (Anderson et al., 2014). Regarding the timing and situation around psychiatric comorbidity, there can be substantial emotional, interpersonal, and financial costs for patients and economic barriers for healthcare OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 6 professionals and the health care system when depressive and anxiety symptoms or disorders are not treated (Anderson et al., 2014). Cancer-Related Fatigue Cancer-related fatigue (CRF) is highly prevalent among cancer survivors and may have long-term effects on physical activity and quality of life (Sada et al., 2021). Cancer-related fatigue is associated with deterioration in mobility performance, an increase in sedentary activities, increases in cumulative sedentary postures (longer sitting and lying postures and shorter standing posture), and a decrease in locomotion activities (lower step count and shorter longest unbroken walking bout) (Sada et al., 2021). Cancer-related fatigue can be caused by cancer itself or a side effect of chemotherapy, and its treatment is often neglected (Chidinma et al., 2017). Physical activity and an associated exercise program may help alleviate the barriers that CRF and other symptoms have on occupational performance during activities of daily living (Sada et al., 2021). Cancer-related fatigue is associated with adverse long-term effects and poorer survival outcomes for cancer survivors (Jones et al., 2016). Unfortunately, accurate assessment of CRF is regularly compromised by subjective screening tools, patient reporting bias, and variable evaluation by clinicians (Chidinma et al., 2017). Cancer-related fatigue is commonly assessed by self-report or clinical observation, which may limit timely diagnosis and management (Sada et al., 2021). The authors explored the current assessment and treatment of fatigue in patients with cancer through reviews and analysis of current pharmacological or non-pharmacological therapies for cancer-related fatigue (Nitipir et al., 2021). The complexity of cancer-related fatigue warrants individualized treatment and a multi-disciplinary approach (Nitipir et al., 2021). OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 7 A sedentary lifestyle can cause catabolic processes which lead to cancer-related fatigue. Therefore, muscle strength following rhythmic physical training can help manage fatigue (Nitipir et al., 2021). A randomized trial with 159 stage I-III breast carcinoma patients, with sleep or depressive disorders following their first cycle of treatment, were included in a 12-week exercise walking program (placebo cohort). At the end of the experimental period, fatigue, assessed by the Brief Fatigue Inventory, was significantly lower in patients who exercised for a longer time period (Nitipir et al., 2021). Physical Activity Baumann (2013) discussed how physical activity (PA) can reduce the loss of power, counteract cancer-related cachexia, reduce treatment-related side effects, and improve general performance. Baumann (2013) further stated that physical activity and controlled exercise therapy improve the quality of life, while also decreasing symptoms of fatigue, loss of function, and reducing the risk for more comorbidities. Physical activity played a large role in increased well-being and enjoyment in a large group of individuals with malignant tumors (Hh et al., 2018). Most of the participants confirmed that PA improved body awareness and provided a feeling that they were able to improve their coping skills and have peace of mind with their diagnosis (Hh et al., 2018). Although there was a decrease in physical activity and sport participation after diagnosis of cancer, participants who performed higher levels of PA and engagement in sports reported a higher quality of life scores than participants who did not meet adequate PA standards after diagnosis (Sammut et al., 2016). Individuals with a cancer diagnosis tend to slow down and decrease their engagement in physical activity. Several factors such as stress, depression, feeling sick, and side effects from the diagnosis or treatment strain activity levels (Hoffman, 2007). One of the best forms of recovery OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 8 for individuals with cancer is to start exercising as soon as possible given the clearance from doctors and capabilities of the individual (Hoffman, 2007). Benefits from exercise for cancer patients include an increased level of fitness, greater muscular strength, leaner body mass, less weight gain, improved mood, boost in self-confidence, and reduced fatigue (Hoffman, 2007). The two most recommended types of exercises for cancer patients are aerobic exercises and weight training, with flexibility and resistance training, also being important factors in regaining a healthy lifestyle (Hoffman, 2007). Benefits of a Healthy Diet Marmot et al. (2007) report evidence that a healthy diet that involves plant-based foods such as fruits and vegetables along with limited intake of high-calorie foods and red or processed meats can help prevent cancer. Cancer survivors need to maintain a balanced diet that includes the above foods in addition to lean proteins, whole grains, and low-fat dairy to manage cancerrelated side effects, daily energy levels, and prevention of recurrence or onset of other cancers and diseases (Marmot et al., 2007). A low-fat diet is beneficial for individuals with cancer due to the positive effect on hormones and the stimulation of growth in cancer cells later in life (Barnard, 2005). Diets rich in vegetables and fruits can also strengthen the white blood cells that seek out and attack cancer cells (Barnard, 2005). Furthermore, nutritional guidelines with specific energy and protein intakes should still be followed with or without a cancer diagnosis. While some patients maintain a strict diet, a majority use self-made or web-based diets to try and alleviate the symptoms of a cancer prognosis (Rinninella, 2020). Rinninella (2020) found a significant positive correlation between certain dietary patterns, especially western diet (WD) trends, and cancer progression. Additionally, high consumption of fiber seemed to be protective against cancer progression and OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 9 mortality (Rinninella, 2020). Cancer patients should continue to incorporate animal proteins such as fish, poultry, low-fat dairy products, and meat and decrease intake of saturated/trans fats, high-fat dairy products, and other WD trends (Rinninella, 2020). Home Modifications for Independence Re-organizing ones home to promote functionality and effectiveness will be a great way to get this population active and create an environment for independence. Home visits by an occupational therapist can prevent falls and can lead to changes in behaviors that enable individuals to live safely within the home and other environments (Cumming et al., 1999). Occupational therapists are equipped with the knowledge to assess homes for environmental hazards and provide home modifications that lead to independence and usefulness during daily activities (Cumming et al., 1999). Lien et al. (2015) note the importance of evaluating both objective and perceived indicators of person-environment (P-E) fit to administer housing modifications that support independence. Participant perceptions of accessibility and usability yielded various approaches that help to achieve performance and independence in daily activities (Lien et al., 2015). Similar to older adults, cancer patients need to simultaneously overcome physical barriers in ways that compensate for functional declines and decreases in environmental support (Lien et al., 2015). Meaning and Purpose A core element of combating these cancer-related effects is finding purpose and meaning during each activity. Cameron and Lively (2016) stressed the importance of finding meaning amidst a cancer diagnosis and eliciting creativity during times of stress and uncertainty. Interventions based around meaning for cancer patients provide techniques that help patients reorder their priorities, spend more time with family, experience more personal growth, and create OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 10 methods of coping with their traumatic loss or illness (Greenstein & Breitbart, 2000). For this population, their midlife or traumatic experience would be a cancer diagnosis. Coping plays an essential role in maintaining the well-being of patients with cancer (Harrop et al., 2017). Three broad domains were identified to categorize the core life concerns of participants; making sense of and managing one's illness, maintaining daily life and relationships, and confronting the future. Within these domains multiple coping themes were identified, which to varying degrees help to maintain patient well-being and quality of life (Harrop et al., 2017). This population can greatly benefit from meaningful and purposeful interventions targeted at redefining important aspects of their lives. Whether going through treatment or living as a survivor, these individuals deserve the best chance at independence and happiness regularly. Communication was vital in collaboratively creating common goals with the participants to prioritize meaningful occupations and activities. Guiding Model and Frame of Reference The Ecology of Human Performance (EHP) theoretical model was used to guide program development and measurement of outcomes. The Ecology of Human Performance model focuses on task performance and the relation to categories of activities of daily living (ADLs), leisure/play, and social participation (Cole & Tufano, 2008). The model depicts how an individual and his/her context affects their tasks and performance. Through this lens, clients can use their abilities and social support to manage barriers in their contexts. The inconsistency of the person, context, and tasks can lead to faulty performance which comes in the form of a lack of physical activity and engagement in meaningful daily occupations (Cole & Tufano, 2008). OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 11 According to the EHP, the client is the facilitator of change, meaning the client is the decision-maker during sessions (Cole & Tufano, 2008). The five specific intervention strategies of the EHP include: establish and restore, alter, adapt/modify, prevent, and create (Cole & Tufano, 2008). These strategies are targeted at the person, context, and task and how these are related and used during clients occupations. By using the EHP, clients will have assistance in providing environments, skills, contexts, support, and motivation that promote performance in the occupations of physical activity, cooking, and modifying/organizing living spaces. The first therapeutic intervention alternative is to establish or restore (remediate) the person's skills and abilities (Dunn et al., 1994). In this category, the occupational therapist identifies the person's skills and the barriers to performance and designs interventions that improve the person's skills and abilities (Dunn et al., 1994). One of the concerns for this population may be re-establishing the person's role in the family, which means it would be beneficial to work on coping skills or physical endurance to enable the person to perform tasks related to the family role. Additionally, cancer survivors may need more interventions related to physical and cognitive capabilities to adapt to the cancer-related side effects. Because of this, occupation-based programs fill the gap for remediating and restoring ones capabilities and performance in daily routines and tasks. Restorative approaches are common options chosen by therapists, particularly within the medical model, which considers what is wrong with the person and sets a plan to correct the problem. (Dunn et al., 1994). This concept is also essential for cancer survivors adapting to their new normal given the occupational limitations from a cancer diagnosis and treatment. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 12 Cancer Support Community Cancer Support Community is a global non-profit network of 175 locations, including CSC and Gilda's Club centers, hospital and clinic partnerships, and satellite locations that deliver more than $50 million in free support and navigation services to patients and families (CSC, 2021). Cancer Support Community also conducts cutting-edge research on the emotional, psychological, and financial journey of cancer patients and advocates at all levels of government for policies to help individuals whose lives have been disrupted by cancer (CSC, 2021). For over 25 years, CSC of Central Indiana has provided education and wellness programs as well as support groups and events that coincide with the needs and goals of cancer survivors. All programs are free of charge and have been offered virtually since the COVID pandemic began. Cancer survivors are challenged with a multitude of physical, mental, and emotional side effects (Edwards & Greeff, 2017). These side effects impact cancer survivors independence and performance of daily activities and occupations (Diaz et al., 2008). Cancer Support Community is an organization that focuses on providing cancer survivors with psychosocial support that helps complement medical treatments and other therapies to help them grow and recover. The education programs offered through CSC aim to empower individuals affected by cancer with the essential knowledge to take an active role in their fight for recovery. The purpose of this DCE is to conduct a needs assessment for the individuals in this community and develop programs based off those needs. The goal of the programs is to improve cancer survivors participation and performance in daily activities while decreasing distress levels. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 13 METHODS Participants This doctoral capstone project included individuals receiving services from the Cancer Support Community (CSC) of Central Indiana. Participants receiving services from this organization either had cancer and were currently undergoing treatment or were cancer survivors. Participants were recruited to CSC through health care professionals, brochures within hospitals and health centers, fellow cancer patients or survivors, and word of mouth. Members involved in this community joined voluntarily and were offered free services on their own time. Needs Assessment To determine programming needs, participants were emailed a survey link to decide programs for the next schedule. The next projected schedule consisted of the months of JuneJuly 2021. Nine programs were listed on the survey for participants to choose from. The nine programs on the list included Walking/Hiking Club, Cooking Class, Outdoor Games and Activities Group, Building Strength and Endurance Program, Peripheral Neuropathy Group, Golf program, Home Organization and Downsizing Educational Series, Game Night, and Finding Meaning and Purpose Educational Series. A total of 46 participants responded to the needs assessment survey with varying program results. The needs assessment program survey sent out is provided in appendix A. Project Materials and Procedures Based on the needs assessment, three separate five-week programs were selected to be implemented including Building Strength and Endurance program, Home Organization and Downsizing Educational Series, and Cooking Class. The Building Strength and Endurance program was offered weekly on Mondays, while the Home Organization and Downsizing OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 14 Educational Series and Cooking classes were offered biweekly on an alternating basis on Wednesdays. Programs were offered virtually for one hour through RingCentral, which is a video service correlated with Zoom. The author recorded attendance for each program throughout their 5-week duration. For participants who were unable to attend during the scheduled meeting times, a PDF summary of the meeting was sent out via email at the end of the program to the participants on the program contact list. It was important to set up growth-facilitating environments that fostered the acquisition and repetition of new skills for the adaptation to various cancer diagnoses and treatment side effects. As the individuals schedule and priorities change from the cancer-related effects and treatments, so does the mastery of skills and life roles. Ongoing communication between the author and the participants when creating the programs was essential for collaboratively setting goals for individuals and the population of CSC as a whole. The Building Strength and Endurance programs were based around three main concepts of strengthening exercises, aerobic exercises, and overall range of motion/movement. Table 1 outlines what occurred during each weekly session. Table 1 Week 1 Energy Conservation, Flexibility, and Balance Week 2 Aerobic Exercises Week 3 Strengthening Exercises Week 4 Balance and Isometric Exercises Week 5 Strengthening and Aerobic Exercises During after-care from cancer treatment, patients are encouraged to engage in homebased exercise programs to improve physical and mental recovery as well as psychosocial OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 15 stabilization (Baumann, 2013). Physically active patients experience psychosocial benefits in terms of a reduction in depression and anxiety (Baumann, 2013). There is evidence that shows that exercise is safe and beneficial for the quality of life and muscular and aerobic fitness for people with cancer during and after treatment (Segal et al., 2017). The Cooking Class revolved around three main concepts of health, energy, and capabilities. Two recipes were demonstrated during each Cooking Class session that occurred during three separate weeks. The recipes were taken from Cancer Support Communitys Recipe Gallery on their website (CSC, 2020). Table 2 outlines the recipes demonstrated during each session. Table 2 Session 1 Egg and Avocado Sandwich & No-Bake Energy Bites Session 2 Chicken Salad & Kiwi Green Smoothie Session 3 Turkey Meatballs w/ Butternut Squash Sauce & Mixed Berry and Yogurt Crepes There is evidence that a healthy diet that involves plant-based foods with a limited intake of high-calorie foods and red or processed meats, can help prevent cancer (Marmot et al., 2007). Balanced diets including lean proteins, fruits, vegetables, whole grains, and low-fat dairy are beneficial for managing cancer-related side effects, increasing daily energy levels, and helping to prevent recurrence or onset of other cancers and diseases (Marmot et al., 2007). In one study, researchers reported that cancer survivors have a positive outlook on eating healthy and make a change or attempt to change their diets following their cancer diagnosis (Beeken et al., 2016). Diet is an important modifiable factor in the lifestyle of cancer survivors and can promote longterm health (Beeken et al., 2016). OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 16 The foundation of the Home Organization and Downsizing Educational Series was to create a safe and functional home environment for cancer survivors at CSC. Within ones living space, there are several opportunities to promote efficiency and productivity during daily activities and tasks. Occupational therapists are equipped with the knowledge to assess homes for environmental hazards and provide home modifications that lead to independence and usefulness during daily activities (Cumming et al., 1999). Cancer patients need to simultaneously overcome physical barriers in ways that compensate for functional declines and decreases in environmental support (Lien, Steggell, and Iwarsson, 2015). Table 3 describes the weekly session for this program. Table 3 Session 1 Organization and decluttering of the bedroom, bathroom, closets/storage spaces, Session 2 Organization and efficiency of kitchen, living and family room, basements, and attics (if applicable) Session 3 Organization and decluttering of the garage and guest presentation on comprehensive storage space for pictures, movies, and other forms of media Measurement of Outcomes Each participant was contacted and the author administered the Distress Screening Tool (Distress Screener) before the beginning of the programs (Patient Planning Services, 2020). Buzaglo et al. (2020) found that the Cancer Support Source Distress Screening Tool was a reliable, and valid multi-dimensional tool that could screen individuals at risk for clinically significant levels of depression or anxiety. The Distress Screening tool allowed for more insight OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 17 into the limitations of the program participants and allowed the author to tailor the programs around improving upon these limitations. A total of 12 program participants completed the distress screener before the program's start date. Five of the twelve participants completed the distress screener after programs had begun. The Distress Screening Tool consisted of 16 questions regarding concerns about various emotions, situations, decisions, and stressors in their life during that particular day. The Distress Screening Tool used a Likert scale from 1-5 with 1 being Not at All concerned to 5 being Very Seriously concerned. The results were added up for a total distress score out of 80 points. A higher distress score represented a higher chance of depression and/or anxiety for the given participant. The second section consisted of demographic information and questions regarding the participants cancer diagnosis. The tool helped bring up conversations about barriers, capabilities, and other factors relating to the level of anticipated participation during each program. The Distress Screening Tool was also administered at the end of the program timeline to assess improvements or declines in distress levels and concerns at the time. A program evaluation survey was sent out at the end of the programs to collect responses of overall effectiveness and satisfaction of the offered programs. RESULTS Prior to programs starting, less than 30 participants were actively participating in overall programming at CSC. After the first week, 59 participants expressed interest in participating in the newly established programs. The number of participants who expressed interest, attended, or asked for follow-up information regarding program content increased each week. A total of 28 different participants attended one or all three of the offered programs during their 5-week duration. Five different participants attended at least one of the Building Strength and Endurance Program sessions. 14 different participants attended at least one of the Home Organization and OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 18 Downsizing Educational Series sessions. Nine different participants attended at least one of the Cooking Class sessions. Several other participants who were unable to make scheduled program times requested information from each session. Needs Assessment Program Evaluation A program evaluation survey was sent out via email to participants who attended and initially expressed interest in attending the occupation-based programs. The survey included seven questions regarding the attendance, usefulness, and overall effectiveness of the programs. A total of 11 out of 28 participants who attended at least one program, completed the program evaluation survey sent out at the cessation of the occupation-based programs. The 11 participants who completed the program evaluation survey reported the programs as OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 19 Moderately to Extremely effective and informative for use during daily activities and overall improvement in well-being. Participants mentioned the variation in program options and the emphasis on using the capabilities of participants with cancer to maximize program outcomes. For example, one participant said, All of the programs I attended were therapeutic and helpful. In response to the program evaluation survey, another participant stated You can really see that all of the programs were planned and constructed thinking about the cancer patient attendees. The Program Evaluation Survey is provided in appendix B. Distress Screener 10 of the 12 participants completed both the initial distress screener at the start of the programs and the final distress screener after the programs. Average distress scores dropped 2.1 points from the initial screening of 9.2 to the final screening of 7.1. Results are depicted in the graph below. Participants mentioned that the programs themselves were the reason for a decrease in concern given specific questions, therefore lowering their overall distress score. Due to the specificity of the occupation-based programs the author was only able to control certain factors from the distress screener such as exercise and physical activity, ability to complete daily tasks, support system, and safety measures. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 20 DISCUSSION According to overall program evaluation and the common needs expressed by the population, occupation-based programs are essential in promoting the independence and wellbeing of members of this local cancer community. The programs increased participant attendance and engagement with other participants throughout their duration. Cancer Support Community should consider acquiring regular feedback and updates to their current and future programs to meet the varying needs and barriers of their participants. Offering occupation-based programs may increase the likelihood of participants gaining the necessary skills and strategies to improve their daily performance in activities and outlook on life. Participants were able to have consistent social participation and occupational engagement from the multiple weekly programs that were offered throughout the 5-week duration. The author had the opportunity to train and inform other CSC students and staff members on the preparation and effectiveness of certain programs. Since the author was directing other programs in addition to the established occupation-based programs, there was ample communication between other team members regarding program content and administration. Due to the lack of occupational therapy (OT) staff and knowledge of occupational science at CSC, a majority of participants gained more insight into the field of occupational therapy and applied this insight during the programs they attended. The participants applied this knowledge through utilizing the safety protocols and universal design strategies throughout their living spaces, practicing exercises and stretches to maximize motion and endurance during daily activities, and completed meal preparation with maximum efficiency that promoted increased energy throughout the day. Topics such as universal design, activities of daily living, meaningful engagement in occupations, independence, balance, and support were continuously brought up OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 21 and discussed throughout each program offered. Having programs that were chosen by participants who voluntarily attended each session made for increased motivation and meaningful participation. Limitations Although the occupation-based programs were beneficial for participants in terms of satisfaction, independence, and overall well-being, several barriers limit the future implementation and success of these programs. Cancer Support Community has several staff members who are clinical hospital coordinators, certified generalists in Oncology, and experienced in program development and operations but do not employ an Occupational Therapist within their team. Therefore, there is limited knowledge and experience in developing and leading occupation-based programs with no effective analysis of occupational performance or demands. Since the Central Indiana location is one of many Cancer Support Communities around the nation, the evaluation of programs only extends to the specific population at this location and limits the widespread use of occupation-based programming. Furthermore, since only three programs were selected out of the nine possible options, there may have been other programs that could have had even higher attendance or been more effective in meeting project goals. Implications for Practice The development of the various occupation-based programs appeared to be beneficial for cancer survivors. Participants were able to gain the necessary skills and creative thinking to combat constant distress and foster independence during daily activities. These occupation-based programs have a place in the treatment and rehabilitation of cancer survivors for their longlasting effects and functionality to varying lifestyles. Occupation-based programs prioritize the OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 22 importance of independence while allowing participants to engage in meaningful activities. The concept of this specific program development may promote the well-being and creativity of cancer survivors for years to come. Implications for Cancer Support Community Cancer Support Community has done a great job adapting program delivery to the changes in society from COVID-19. Programs have gone from in-person to virtual meetings and have changed the accessibility for participants a part of this community. The needs of cancer survivors are constantly changing and require creative and updated programming during each monthly schedule. Occupation-based programs, such as the ones in this doctoral capstone project, appeared to be effective for the population at the Cancer Support Community of Central Indiana. The continuation of these programs requires the administration from either an occupational therapy student or an occupational therapist to have the most opportunities for positive effects on the individuals enduring treatment or survivors who are looking to reintegrate themselves back into the community. Cancer Support Community of Central Indiana would benefit from hiring an occupational therapist on staff to administer interventions that would help promote growth and rehabilitation for this population. An occupational therapist on staff also means the effective administration and evaluation of the programs implemented throughout the doctoral capstone project. CONCLUSION Occupation-based programming appeared to be beneficial for the cancer survivors at Cancer Support Community of Central Indiana. These programs resulted in participants decreased distress levels on the Distress Screening tool, improved sense of independence during certain occupations, and resources for participants to find meaning and creativity in their lives. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 23 Occupation-based programs should be incorporated into the regular schedule at Cancer Support Community for continued variation in programs, assistance in occupational independence, and prioritization of meaningful occupations. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 24 References Andersen, B. L., DeRubeis, R. J., Berman, B. S., Gruman, J., Champion, V. L., Massie, M. J., Holland, J. C., Partridge, A. 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European Journal of Oncological Nursing. 17(6):767-74. https://doi.org/10.1016/j.ejon.2013.03.011 Jones, J.M., Olson, K., Catton, P., Fleshner, N.E., Kyzyzanowska, M.K. (2016). Cancer-related fatigue and associated disability in post-treatment cancer survivors. Journal of Cancer Survivorship; 10, 5161. https://doi.org/10.1007/s11764-015-0450-2 OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 27 Kim, K., & Yoon, H. (2021). Health-related quality of life among cancer survivors depending on the occupational status. International Journal of Environmental Research and Public Health, 18(7). https://doi.org/10.3390/ijerph18073803 Lien, L. L., Steggell, C. D., & Iwarsson, S. (2015). Adaptive strategies and person-environment fit among functionally limited older adults aging in place: A mixed-methods approach. International Journal of Environmental Research and Public Health, 12(9), 11954 11974. https://doi.org/10.3390/ijerph120911954 Marmot, M., Atinmo, T., Byers, T., Chen, J., Hirohata, T., Jackson, A., James, W., Kolonel, L., Kumanyika, S., Leitzmann, C., Mann, J., Powers, H., Reddy, K., Riboli, E., Rivera, J.A., Schatzkin, A., Seidell, J., Shuker, D., Uauy, R., Willett, W., Zeisel, S. (2007). Food, nutrition, physical activity, and the prevention of cancer: A global perspective. (WCRF/AICR Expert Report ). World Cancer Research Fund / American Institute for Cancer Research. Retrieved July 2, 2021, from https://discovery.ucl.ac.uk/id/eprint/4841/1/4841.pdf National Cancer Institute. (2020). Cancer Statistics. National Institutes of Health. Retrieved July 10, 2021, from https://www.cancer.gov/about-cancer/understanding/statistics Niipir, C., Paroanu, A., Alecu, L., Popa, A. M., Iaciu, C., Olaru, M., Adrian, T., Slavu, I., & Orlov-Slavu, C. (2021). Latest news in cancer-related fatigue. Paliatia: Journal of Palliative Care, 14(1), 59. Retrieved June 13, 2021, from http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=149327116&site=ehos t-live. Novakov, I., Popovi-Petrovi, S., Ilini-Zlatar, S., Tati, M., & evo, M. (2021). What OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 28 contributes the most to the breast cancer patients quality of life during therapy - clinical factors, functional and affective state, or social support? Vojnosanitetski Pregled: Military Medical & Pharmaceutical Journal of Serbia, 78(4), 445455. https://doi.org/10.2298/VSP190501024N Patient Planning Services, Inc. (2020). Distress screening assessment tool. Cancer Support Source. Retrieved May 15, 2021, from https://www.patientplanningservices.com/cancersupport-source Rinninella, E., Mele, M. C., Cintoni, M., Raoul, P., Ianiro, G., Salerno, L., Pozzo, C., et al. (2020). The facts about food after cancer diagnosis: A systematic review of prospective cohort studies. Nutrients, 12(8), 2345. https://doi.org/10.3390/nu12082345 Sada, Y. H., Poursina, O., Zhou, H., Workeneh, B. T., Maddali, S. V., & Najafi, B. (2021). Harnessing digital health to objectively assess cancer-related fatigue: The impact of fatigue on mobility performance. PLoS ONE, 16(2), 115. https://doi.org/10.1371/journal.pone.0246101 Sammut, L., Fraser, L. R., Ward, M. J., Singh, T., & Patel, N. N. (2016). Participation in sport and physical activity in head and neck cancer survivors: associations with quality of life. Clinical Otolaryngology, 41(3), 241248. https://doi.org/10.1111/coa.12506 Segal, R., Zwaal, C., Green, E., Tomasone, J. R., Loblaw, A., & Petrella, T. (2017). Exercise for people with cancer: A systematic review. Current Oncology, 24(4), 290315. MDPI AG. Retrieved from http://dx.doi.org/10.3747/co.24.3619 Spiegel, D., Bloom, J., & Yalom, I. (1981). Group support for patients with metastatic cancer. Archives of General Psychiatry, 38, 527-533. http://dx.doi.org/10.1001/archpsyc.1980.01780300039004 OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 29 Stanton, A.L., & Bower, J.E. (2015). Psychological adjustment in breast cancer survivors. Advances in Experimental Medicine and Biology; 862: 231-242. https://doi.org/10.1007/978-3-319-16366-6_15 Werdani, Y. D. W. (2018). Effect of cancer-related fatigue to the level of independence of cancer patients and caregiver stress level. Folia Medica Indonesiana, 54(2), 108112. https://doi.org/10.20473/fmi.v54i2.8859 OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 30 Appendix A. Needs Assessment/Program Interest Survey 1. Would you be interested in participating in any of the following programs? Check all that apply: a. Walking/Hiking Club b. Cooking Class c. Outdoor Games and Activities Group d. Building Strength and Endurance Program e. Peripheral Neuropathy Group f. Golf Training Program g. House Organization and Downsizing Educational Series h. Game Night i. Finding Meaning and Purpose Educational Series 2. How often would you like these programs to meet? a. Once a week b. Every other week c. One meeting 3. Would you be comfortable attending programs in person if they were offered? a. Yes b. No 4. Would you attend these programs if they were offered virtually? a. Yes b. No 5. We'd love to contact you when we start these programs. Please leave your name and email. OCCUPATION-BASED PROGRAMS FOR CANCER SURVIVORS 31 Appendix B. Program Evaluation Survey 1. Did you attend any of the programs led by Thomas? (Exercise, Cooking, or Home Organization) a. Yes b. No 2. Did you find the programs to be helpful, useful, or informative? a. Not at All b. Slightly c. Moderately d. Extremely 3. If you weren't able to attend any programs, did you view the summary/recap document sent after the end of each program? a. Yes b. No 4. Did you find the summary/recap documents to be helpful, useful or informative? a. Yes b. No 5. Did you learn more about the field of Occupational Therapy during any of the programs? a. Yes b. No 6. What was the best part/most beneficial aspect of the programs? a. Comment  ...

... 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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European Journal of Cancer Care, 26(4), https://doi.org/10.1111/ecc.12628 Kneis, S., Wehrle, A., Mller, J., Maurer, C., Ihorst, G., Gollhofer, A., & Bertz, H. (2019). Its never too late - balance and endurance training improves functional performance, quality of life, and alleviates neuropathic symptoms in cancer survivors suffering from chemotherapy-induced peripheral neuropathy: results of a randomized controlled trial. BMC Cancer, 19(1). doi: 10.1186/s12885-019-5522-7 Krok-Schoen, J., Naughton, M., Bernardo, B., Young, G.& Paskett, E. (2018). Fear of recurrence among older breast, ovarian, endometrial, and colorectal cancer survivors: Findings from the WHI LILAC study. Psycho-Oncology, 27(7), pp.1810-1815. Larkey, L. K., Roe, D. J., Weihs, K. L., Jahnke, R., Lopez, A. M., Rogers, C. E., GuillenRodriguez, J. (2014). Randomized controlled trial of qigong/tai chi easy on cancer-related fatigue in breast cancer survivors. 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British Journal of Occupational Therapy, 83(5), 297-315. doi:10.1177/0308022619891837 National Cancer Institute. (2019). NCI dictionary of cancer terms: Survivor. Retrieved from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor National Cancer Institute. (2018). Cancer statistics. Retrieved from https://www.cancer.gov/about-cancer/understanding/statistics Pergolotti, M., Cutchin, M. P., Weinberger, M., & Meyer, A. M. (2014). Occupational therapy use by older adults with cancer. The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association, 68(5), 597607. https://doi.org/10.5014/ajot.2014.011791 Pergolotti, M., Bailliard, A., McCarthy, L., Farley, E., Covington, K.R., & Doll, K.M. (2020). Women's experiences after ovarian cancer surgery: Distress, uncertainty, and the need for occupational therapy. The American Journal of Occupational Therapy, 74(3). https://doi.org/10.5014/ajot.2020.036897 Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 54 of 61 Petruseviciene, D., Surmaitiene, D. Baltaduoniene, D., & Lendraitiene, E., (2018). Effect of community-based occupational therapy on health-related quality of life and engagement in meaningful activities of women with breast cancer. Occupational Therapy International, 113. doi:10.1155/2018/6798697 Powell, C. (2003). The Delphi technique: Myths and realities. Journal of Advanced Nursing, 41(4), 376-382. doi:10.1046/j.1365-2648.2003.02537.x Salerno, E. A., Rowland, K., Kramer, A. F., & McAuley, E. (2019). Acute aerobic exercise effects on cognitive function in breast cancer survivors: A randomized crossover trial. BMC Cancer, 19(1). doi:10.1186/s12885-019-5589-1 Sekayi, D., & Kennedy, A. (2017). Qualitative Delphi method: A four round process with a worked example. The Qualitative Report, 22(10), 2755-2763. Retrieved from https://nsuworks.nova.edu/tqr/vol22/iss10/15 Shahidi, J., Taghizadeh-Kermani, A., Gohari, M.R., Ghavamnasiri, M.R., Khoshroo, F., Pourali, L., & Cohen, S.R. (2014). Changes in daily activities of cancer patients after diagnosis: How do Canadian and Iranian patients perceive the change? Iranian Journal of Cancer Prevention, 7(1), 28-34. Sleight, A. G., & Duker, L. I. S. (2016). Toward a broader role for occupational therapy in supportive oncology care. American Journal of Occupational Therapy, 70(4), 70043600301. https://doi.org/10.5014/ajot.2016.018101 Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 55 of 61 Smidt, K., Mackenzie, L., Dhillon, H., Vardy, J., Lewis, J., Loh, S., & Loh, S. Y. (2016). The perceptions of Australian oncologists about cognitive changes in cancer s urvivors. Supportive Care in Cancer, 24(11), 46794687. https://doi.org/10.1007/s00520-016-3315-y Stricker, C. T., Jacobs, L. A., Risendal, B., Jones, A., Panzer, S., Ganz, P. A Syrjala, K. L. (2011). Survivorship care planning after the Institute of Medicine recommendations: How are we faring? Journal of Cancer Survivorship, 5(4), 358-370. doi: 10.1007/s11764011-0196-4 Suija, K., Kordemets, T., Annuk, K., & Kalda, R. (2015). The Role of General Practitioners in Cancer Care: A Mixed Method Design. Journal of Cancer Education, 31, 136-141. https://doi.org/10.1007/s13187-015-0834-z Syrjala, K. L., Stover, A. C., Yi, J. C., Artherholt, S. B., & Abrams, J. R. (2010). Measuring social activities and social function in long-term cancer survivors who received hematopoietic stem cell transplantation. Psychooncology, 19(5), 462-471. doi:10.1002/pon.1572 Thomas-Maclean, R. L., Hack, T., Kwan, W., Towers, A., Miedema, B., & Tilley, A. (2008). Arm morbidity and disability after breast cancer: New directions for care. The Oncology Nursing Forum, 35(1), 65-71. doi:10.1188/08.ONF.65-71 Thomas, R., Thomas, F. H., Quinlan, E., Tatemichi, S., Towers, A., Kwan, W., Tricia, M. (2015). Loss, adaptation and new directions: The impact of arm morbidity on leisure activities following breast cancer. Canadian Oncology Nursing Journal, 25(1), 49-53. doi:10.5737/236880762514953 Document Ref: XRFVX-UNFIU-DBXKN-D3NR6 Page 56 of 61 Thorsen, L., Gjerset, G. M., Loge, J. H., Kiserud, C.E., Skovlund, E., Fltten, T., & Foss, S. D., (2011). Cancer patients needs for rehabilitation services, ACTA Oncologica, 50(2), 212-222. https://doi.org/10.3109/0284186X.2010.531050 Wallis, A., Meredith, P., & Stanley, M. (2020). Cancer care and occupational therapy: A scoping review. Australian Occupational Therapy Journal, 67(2), 172 194. https://doi.org/10.1111/1440-1630.12633 Yim Loh, S., & Jonsson, H. (2016). Cancer survivorship care: A perspective from an occupational-participation approach. Journal of Cancer Science & Therapy, 8(7), 179-184. 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.  ...

... The Effect of Fish-Extracted Collagen on the Growth of Malignant Cells By Katherine May Honors Project Thesis Submitted in Partial Fulfillment Of the Requirements for a Baccalaureate Degree With Distinction In the Ron and Laura Strain Honors College of THE UNIVERSITY OF INDIANAPOLIS May 2020 Faculty Advisor: Dean A. Wiseman, Ph.D. Executive Director of Honors: James B. Williams, Ph.D. Katherine May 2020. Copyright in this work rests solely with the author. Please ensure that any reproduction or re-use is done in accordance with relevant national copyright protection. ii Abstract Collagen, the protein that makes up the majority of extracellular matrix structure, is essential in cell communication and proliferation. Research has found that collagen is also responsible for promoting many types of cancer growth because it both provides the infrastructure needed for the cells to expand, and it lessens the need for cell-cell interactions, therefore promoting cell motility. Clinically, collagen is used to treat severe burn victims as it assists in regenerating skinthis therapy typically involves bovine collagen or synthetic collagen. While these forms of collagen are readily available to clinicians, they are expensive, and it would be extremely useful to identify lower-cost alternatives. Recently, it has been discovered that tilapia, a fish popular for dietary consumption, and is now farmed all over the world, possesses high concentrations of collagen in its skin that can be easily extracted. Our hypothesis is that tilapia collagen could serve as a substitute to collagen derived from other sources in cell culture. By examining how malignant cells respond to tilapia collagen, we can determine if adding collagen to the media and/or as a coating on the surface of the tissue culture flasks in which these cells are grown on, creates a more authentic environment for the cells to grow in, better mimicking what cells would encounter in vivo. Firstly, we employ a cellproliferation assay, comparing the impact that tilapia-derived collagen has on cell proliferation rate, with the findings providing insight into both cell growth and wound healing. We also utilized colony-forming assays to determine whether cancer cells respond differently to cancer drugs in the presence of collagen. This would give insight into the feasibility of using tilapia collagen in further cancer research without significant changes to traditional cell culture. iii Table of Contents Abstract ........................................................................................................................................... ii Acknowledgements ........................................................................................................................ iv List of Tables .................................................................................................................................. v List of Figures ................................................................................................................................ vi Statement of Purpose .................................................................................................................... vii Introduction ..................................................................................................................................... 1 Creating a better in vitro cell culture model system.................................................................... 5 Tilapia-extracted collagen to create a better model system ........................................................ 6 Cancer Chemotherapy ................................................................................................................. 6 Farnesol as a Cancer Drug .......................................................................................................... 8 Methods and Procedures ................................................................................................................. 9 Colony-Forming Assay ............................................................................................................... 9 MTS Assay ................................................................................................................................ 10 Statistical Analysis .................................................................................................................... 11 Results ........................................................................................................................................... 12 Analysis/Conclusion ..................................................................................................................... 17 Reflection ...................................................................................................................................... 21 Bibliography ................................................................................................................................. 22 iv Acknowledgements I would like to thank the Strain Honors College for making my research possible. Without their support, I would not have been able to conduct the research or have the resources that I needed available. I would also like to thank Dr. Dean Wiseman for his guidance and support throughout the entire project. v List of Tables Table 1: Data from the Colony Forming Assay 12 Table 2: Data from MTS Assay 14 vi List of Figures Figure 1: Colony Forming Assay Graph and Plate Example 13 Figure 2: Graph of data collected from MTS Assay 15 Figure 3: Linear Slope Index of MTS Assay 16 vii Statement of Purpose The purpose of this study was to determine if tilapia-derived collagen has a promoting effect on the growth of breast cancer cells in vitro, with the goal of determining the feasibility of use as a substitute to more expensive cell culture reagents. In addition, this new potential cell culture reagent needed assessment to determine if and how tilapia collagen affects the behavior of this malignant cell culture model system. To those ends, in this study we first tested and compared the growth of these cells in different concentrations of collagen and ran a colonyforming assay. We also tested to see if the presence of collagen influences cell growth and/or drug resistance within MCF7 breast cancer cells via MTS colorimetric cell proliferation assay. 1 Introduction The basis of this project was to observe how added tilapia collagen in cell cultures promotes cell proliferation and growth in malignant cancer cells. Previous research has shown that type 1 collagen, found in high concentrations in cytoplasm, promotes cell regrowth and proliferation (3). Initially used for burn victims, doctors would apply collagen-rich bandages, from bovine, equine, or porcine sources, or skin grafts to promote skin regrowth (1). In countries with less access to these resources, intact tilapia skin was used as an alternative because it is rich in collagen, inexpensive, and abundant in those countries (1). The initial idea to use tilapia skin occurred in 2017 in Brazil, when it was discovered that tilapia skin could, indeed, be used as bandages for burn victims (1). The lack of accessibility to both human skin and the typical animal skin that is used to treat burns led to this discovery. Typically, doctors would use bandages and creams to dress wounds, but this method was difficult and inefficient as the bandages would dry out and had to be changed every day. An idea to use tilapia skin was centered around the fact that it can hold moisture better than gauze can, and has a high collagen content that is thought to promote keratinocyte and skin fibroblast cell regrowth. Collagen bandages offer more therapeutic benefits than typical wound dressings because they not only prevent infection, but also promote regrowth and provide more substantial protection of the wound from the environment than traditional bandages and dressings (2). Collagen creates a barrier that is impermeable to bacteria, keeping out further complications like bacterial infection. One study involving clinical assessment of open wounds such as ulcers, postoperative wounds, and infection sites, suggests that using collagen bandages in replacement of typical wound dressings such as silver sulfadiazine or nadifloxacin, reduces loss of fluids and 2 could potentially help the patient avoid skin grafting (2). While the study showed that both groups with or without collagen had good healing results, the group treated with collagen had earlier cell motility, and overall a less painful recovery. This reinforces the idea that collagen is beneficial in wound treatment and healing, and supports the idea that further research into collagen and its properties on cell growth of all kinds is merited. When researchers tested tilapia skin to determine collagen content, they were shocked at the amount of both collagen 1 and collagen 3 they found present in tilapia skin. The presence of this collagen is significant because these types of collagen have been previously shown to promote healing through cell regeneration (3). Other researchers have explored the idea of using tilapia in medicine (4,5,6). Not only can tilapia skin be used as a bandage, but collagen contained within tilapia skin has shown to have many other applications, including uses in the food industry, cosmetics, and as pharmaceutical drug coatings (6). The original extraction process was developed to extract gelatina denatured form of collagenfrom salmon (4). A more efficient method was developed for tilapia collagen extraction (7), which creates a product that is closer to the product we ultimately decided to use in our experiments. Due to constraints in our ability to extract tilapia directly and efficiently, we elected to purchase 100% tilapia extracted collagen for use in our experiments. One interesting advantage tilapia collagen has over bovine collagen is that the latter poses an issue to certain vegetarians and Hindus, given that consumption of cows and items derived from cows is against their beliefs. By replacing this bovine collagen with tilapia collagen, a large variety of products are now available for these groups of people that would otherwise not be. Thus, this new source of collagen will impact both the medical field as well as the food industry in a manner that is generally acceptable to a majority of people around the world. Once tilapia 3 collagen was established to be biologically safe (7), these prospective ideas became more plausible. Coupled with the ability to extract collagen (4,5) the potential uses of this protein source are many. When testing gelatin created from fish collagen, researchers found that collagen from fish sources can enhance cell adhesion, cell growth, and wound healing in HaCaT cells (a keratinocyte cell line from adult human skin) that had been exposed to H2O2-induced cellular damage (5). Cell adhesion is necessary in all cells, but especially the most aggressively malignant cell cultures because it serves as a growth signal to cells, promoting proliferation, migration, and differentiation. Extremely malignant cell types, on the other hand, either secrete their own growth-promoting cell signals (autocrine stimulation), or the signal receptor pathways have mutated to the point that they no longer need external signaling in order to grow and proliferate. By increasing the ability of relatively normal, non-malignant HaCaT cells to do this, it created a more realistic model system in terms of similarity to actual skin tissue that could give researchers a more specific insight into how these cells think and function in terms of wound healing. Collagen is a normally insoluble fibrous protein found in the extracellular matrix (ECM) of cells and makes up 25% of the total protein mass found in vertebrates (4). It promotes cell growth because it provides structural support and helps maintain tissue homeostasis by creating the scaffolding that allows the cell to have the appropriate space to carry out necessary functions (3). Previous research has also found that collagen contains a high amount of arginine-glycineaspartic acid amino acids, which research has shown also promotes cell adhesion and proliferation (6). There are currently 27 identified types of collagen, but most research focuses on type 1 because it is the most abundant in the human body. 4 The ability of collagen to promote cell growth is transferrable to cancer cells. Studies utilizing a model system for lung metastasis show that tumor growth was negatively affected when collagen 1 was depleted from the cellular environment (8). Moreover, as cancer cells spread, collagen fibers encountered by the cells would strengthen and remodel to better fit the metabolic needs of the cancer cells. So, from the idea that depleting collagen levels would decrease cell growth, comes the idea that increasing collagen levels would promote cell growth (3). It was once believed that collagen acted as a barrier, prohibiting cancer from spreading as rapidly, but as it turns out, collagen can also promote cancer cell growth by changing the microenvironment (3). Collagen protein fibers typically comprise up to 90% of the extracellular matrix (ECM), which is where cancer tumor cells initially invade as they progress through the bodyin fact, the definition of malignancy is the point when cancer cells move beyond the tissue of origin into other tissues, and the ECM (9). This is important because the ECM is the location where signaling that is involved in proliferation, migration, invasion and other important functions of the cells takes place (10). Because the ECM is so rich in collagen, when cancer cells invade, the contents of the ECM promote the spread of cancer by essentially building pathways for the cancer to follow and promoting cell adhesion as well. In addition, collagen is involved in sustaining a phenomenon termed epithelial-mesenchymal transition (EMT) which is the controlling of different proteins to promote or obstruct cell-cell contacts (10). When collagen is present in normal amounts and cancer encounters the ECM, EMT promotes the downregulation of epithelial proteins and an upregulation of mesenchymal proteins. This in effect causes the loss of cell-cell contact and therefore leads to more cellular motility, and ability to invade additional 5 tissues. Essentially, collagen helps increase the ability of the cancer cells to move around and therefore spread (10). Creating a better in vitro cell culture model system Two-dimensional (2D) models of cells are traditional for research; some research has indicated that a three-dimensional cell culture model, an artificially created environment in which cells are permitted to grow or interact with their surroundings in all three dimensions, more closely mimics conditions inside the body. By growing the cells in a three-dimensional pattern, cells can more readily transfer nutrients, communicate, and allow ECM interactions that cannot normally take place in 2D models (14). However, using 3D models in research has its own set of disadvantages: they are expensive to create and hard to observe. To keep expenses low, researchers often fall back on the less accurate 2D models for cell culture, at the risk of cells not being able to communicate and proliferate as readily, and not effectively mimicking in vivo physiological conditions. Collagen is a very fibrous substance that acts as scaffolding for the cells that it encounters. This extra support allows the cells to grow on different microscopic planes within the plate, rather than flat on the surface. Adding collagenand in this case tilapia-extracted collagento promote the growth of cells in culture could potentially serve as an effective compromise, boosting the proliferation rate and making a lower-cost, 2D model cell culture system more analogous to conditions found in actual cancerous tumors. To understand how cancer works, Weinberg contends that we must first understand a minimum of six biological processes he terms hallmarks of cancer(9). These hallmarks appear to be biological commonalities across all cancer cells, or barriers that cells must overcome in 6 order to develop into full-blown metastatic cancer and help us understand and develop therapeutic and preventive clinical strategies against them. These hallmarks include: sustaining proliferative signaling; evading growth suppressing signals; activating invasion and metastasis; enabling DNA replicative immortality (normal cells seem to reach a limit in terms of number of cell divisions, termed the Hayflick Limit); inducing growth of new blood vessels (termed angiogenesis); and resisting cell death (15). Most traditional chemotherapeutic agents to date are used to exploit how cancer activates invasion and metastasis and sustains proliferation signals. It is important however, to keep in mind the other four hallmarks for therapy, as they might provide an explanation for why the cancer cells act in specific ways. Tilapia-extracted collagen to create a better model system The discovery of collagen-rich tilapia skin has led to many advancements in ideas and products throughout the world. What started as a basic idea to satisfy a lack of resources, has exploded into hundreds of journals and research articles outlining other ways this collagen can be useful to us. By extending this idea further into the realm of cancer research, if successful, could be advantageous. Creating a better model system at a cheaper cost that more closely replicates the physiological conditions of cancer cells in the body, will open the door for future research to be done and create endless research and clinical possibilities, particularly at smaller universities where financial constraints are significant. Cancer Chemotherapy Chemotherapy is one of the most common methods used to treat, and hopefully cure, cancer in a patient. It works by using chemical compounds to target specific metabolic vulnerabilities in cancer cells. This would include DNA replication and metabolic targets that 7 impact different phases of the cell division cycle and kills the cells. Alternatively, some chemotherapeutic agents are used with the goal of shutting off certain types of intracellular signals that induce cells to grow and divide, or to block certain normal processes in cells and tissues which have been hijacked by cancer cellssuch as triggering new growth of blood vessels. Because cancer cells are dividing at a rapid rate and are highly active metabolically, cancer cells tend to be more vulnerable than normal cellsthis difference is implied in what is known as a therapeutic index (11), where chemotherapeutic drugs can successfully affect cancerous cells at doses below that which causes toxicity and other significant adverse side effects in patients (12). Chemotherapy drugs include DNA alkylating agents, antimetabolites, anti-tumor antibiotics, topoisomerase inhibitors, and receptor inhibitors (12). The negative side of using these drugs in therapy is that they can frequently affect healthy cells, especially cell populations which are rapidly dividing, such as bone marrow (which makes red and white blood cells), hair, and the digestive tract. And so, patients typically see some fairly severe side effects. On the other hand, using chemotherapy drugs or other anti-cancer drugs are useful in cancer research, because the effects observed in cancer cells under research conditions can be helpful to predict outcomes in the patient. Perhaps just as importantly, even less than highly effective drugs used in the research lab can provide important information about the biology of cancer cells, as well as provide insight into potential specific targets for which a more effective compound might be developed (13). To that end, it is vitally important that when creating a new model system for growing cellsbe them cancer cells or other types of cells intended for therapeutic use, to note how cells react in various environments and how closely this relates to the in vivo conditions within 8 actual patients. Creating biologically authentic environments in vitro, including a collagen-rich environment that we are interested in, can tell a researcher a lot about what could happen to cells in vivo if we either change the environment inside a patient, or subject the patient to chemotherapy. If the environment created does not accurately replicate the in vivo biological system, then the data that is collected will likely not be as predictive as it could be. Farnesol as a Cancer Drug The anti-cancer drug that we used in this study was farnesol. This orphan drug (as categorized by the FDA), that has remained mostly undeveloped commercially due to lack of profitability, is found mostly in nature within the essential oils of plants. Farnesol is a relatively new anti-cancer drug, and therefore its mechanism of attack is not understood completely. It has many uses, including anti-inflammatory effects and alleviating allergic asthma and edema, though the most important property of farnesol for our study is its anti-cancer effects. Farnesol has an antiproliferative effect on cells due to its ability to induce apoptosis, and/or upregulate regulatory proteins which delay or halt the cell cycle altogether (17). We used various concentrations of this drug in order to observe the potential of some cells living after applying the drug. In one study, scientists observed the effect of farnesol and other anti-cancer drugs on pancreatic cancer cells to determine when the drug plays a role on the cell cycle. They determined that farnesol, and the other drugs, have a G0/G1 phase cell cycle arrest on cells that correlated with an increase in cyclin kinase inhibitor proteins (18). This is important to note because if the drug effects the cells in the early phases of proliferation, like the G0 or G1 phase, it could have a stronger effect on cells and kill more of the living cells. These phases are crucial because during this time, the cells are preparing for DNA replication and are vulnerable. 9 Methods and Procedures Colony-Forming Assay This procedure is based on a protocol developed by Shoemaker, et al (19). For this set of experiments, we used Premium Marine Collagen Peptides by Zammex to pre-treat tissue culture plants onto which we would apply a low density (~1-5 cells/cm2). The only ingredient in the collagen was from tilapia non-GMO Type I and III collagen. This simplified the procedure for extracting the collagen from tilapia ourselves and allowed us to work solely with the cells. We used this collagen to create different concentrations of collagen mixed with water. The three concentrations we decided to use were 0.5 mg/ml, 1.0 mg/ml, and 2.0 mg/ml. We created these concentrations by measuring out a designated amount of collagen, adding it to a 50mL flask and then adding the appropriate amount of water. To make sure the collagen was evenly distributed and dissolved, we left them on a laboratory rocker over night as a constant speed and temperature. Next, we applied 1mL of the 0.5 mg/ml mixture to a sterile culture dish. We repeated this step twice for each concentration for a total of 6 plates. Next, we left them in the sterile hood over night for the water to evaporate, leaving only the collagen. We also plated two culture dishes with just 1mL of distilled water as a control. After the dishes were dried, approximately 500,000 MCF-7 cells were plated in a volume of 3 ml of standard Dulbeccos Modified Eagle Medium (DMEM). Cultures were incubated in humidified 37C incubator with an atmosphere of 5% CO2 in air, and control plates were monitored for growth using an inverted microscope. At the time of maximum colony formation, (7 to 21 days in culture), final colony counts were obtained with a Bausch and Lomb Omnicon (FAS II) image analysis system. We performed our counting procedure on day 9 of the cells 10 being incubated, based on a plateau of growth observed. Objects presenting a circular profile minimum approximate diameter of 60 um were scored as colonies by the system. For quality control purposes, control plates were also counted on the day of plating (Day 0) or the following day (Day 1). The colony forming assay tests the ability of cells to grow into colonies. It essentially gives us information about the viability of a cell and its potential for continued growth and reproduction. We chose this assay to see if there were more viable cells and better cell replication present on plates with or without collagen present. MTS Assay The next assay that we performed was the MTS Assay. We started by creating our collagen mixtures again of 0.5 mg/ml, 1.0 mg/ml, and 2.0 mg/ml, and allow them to mix at room temperature overnight. Then we plated a 96-well plate with 24 wells of control, which just consisted of purified water, and 24 wells of each concentration of collagen. We allowed these to dry in aseptic conditions overnight, and then plated our cells the next day. After 24 hours, we exchanged the media in each well and added fresh DMEM to the cells. After allowing an additional 24 hours of growth, we then added DMEM with our cancer drug (farnesol) in various concentrations (0, 20, 40, and 80 M) to the cells. We chose to use farnesol because of our accessibility to it and its known effect on cancer cells. After exposing the cancer drug to the cells for 24 hours, we examined cell viability using an MTS assay to determine how many cells were still living. Following the manufacturers recommended protocol, briefly, we added 20 M/well of the MTS reagent and incubated the plates for 3 hours at 37C. After the incubation period, we measured the absorbance of the collagen treated verses untreated cells using a plate reader at OD= 490 nm. 11 We chose to perform an MTS assay to see if collagen promoted drug resistance and/ or increased growth following the cancer drug treatment. Adding farnesol is analogous to a wounding event, therefore observing the number of living cells following the treatment can tell us a lot about how the presence of collagen influenced the results. Statistical Analysis Samples were tabulated and subjected to analysis for statistical significance using a twotailed unpaired Students t-Test (21). Samples with a p-value less than, or equal to 0.05 were considered statistically significant. Those that were considered statistically significant were marked with an asterisk on the graph. 12 Results The colony forming assay produced results shown in Figure 1, and Table 1 below. Each blue dot on the plates shown at the top of Figure 1 is a viable colony and the values listed in the table below come from averaging all the data across trays with the same plated collagen concentration. Any colonies smaller than approximately 0.25 mm were omitted. We deidentified and labeled the trays alphabetically so that there was no biased when counting the viable cells. We then later determined the concentration associated with each tray to record the data. Table 1: Raw data from the Colony Forming Assay . 13 Figure 1. Effect of tilapia collagen on MCF-7 cell proliferation and migration. Approximately 5 x 105 MCF-7 breast cancer cells were plated on 35mm tissue culture plates pretreated with 0-2mg/ml tilapia collagen solution in ddH2O. After 9 days of incubation, colonies were counted, samples were deidentified with letters, as shown at the top of the figure, and counted. Each plate contained a different concentration of collagen. The graph represents the average number of colonies on each plate (n=8) Standard deviation. * p0.05 vs. untreated. 14 The next analysis that we performed was the MTS assay. After calculating the viability of the cells following the addition of the cancer drug, we came up with the following graph to exhibit the data. Table 2. Raw data from MTS assay 15 16 17 Analysis/Conclusion The results we collected from the colony-forming assay indicate that there is a progrowth and migration effect from addition of tilapia collagen for MCF7 cells, but also that too much collagen prohibits cell growth. There is a statistical significance between the untreated plate and the plate treated with 0.5 mg/ml of collagen. This indicates that having the collagen present likely created more favorable conditions for cells to grow and adhere to the plate. When we increase the collagen concentration to 1.0 mg/ml, there is another slight increase in the number of cells present, but it is not statistically significant relative to 0.5 mg/ml. On the other hand, when we increased the concentration to 2.0 mg/ml, there appears to be an inhibiting effect, given that there were fewer cell colonies present than the untreated plate. It is possible that the cells were overcrowded by the amount of collagen on the plate and therefore couldnt spread and grow as rapidly and efficiently as the cells on the other plates. Another possibility is that excess collagen blocked other signals that the cells need to grow. The data from the MTS assay presents a similar finding. When analyzing samples that did not receive any farnesol, the results support what we noticed with the colony-forming assay; Cells grew more abundantly in 1 mg/ml collagen plates, and the 2 mg/ml collagen caused an inhibiting effect. As we look at cells grown in the 1 mg/ml plates, they did statistically significantly better at surviving/growing than the untreated cells following the farnesol treatment. Furthermore, when we compare the number of cells present following the 10 M farnesol treatment for cells grown in 0.5 mg/ml and 1 mg/ml we also observe a large increase in the cells plated with 1 mg/ml collagen. This clearly supports our hypothesis that collagen influences the growth following a wounding event such as our anti-cancer treatment. The cells grown in the 18 optimal concentration of collagen exhibited better wound healing and growth factors than other plates. On the other hand, in spite of the improved growth characteristics of collagen, and some statistically different responses to the anti-cancer drug farnesol (Figure 2.), when we subjected the dose-response curves to a linear slope analysis (Figure 3.), we find that the average curve slope versus drug dose does change, but not to the point where we would consider the difference in slope to be of significant concern in future experiments. Any time that dependent variables are changed in an experiment, there is always the risk than an untoward effect will occur. This is especially of concern regarding in vitro drug efficacy studies prior to entering an in vivo or clinical model system. Such effect may be pharmacokinetic, such as theoretically our treatment may act as an absorbent, preventing some of the drug from encountering the cell. A more insidious potential effect is that the tilapia collagen affects the internal biochemistry of the cell, resulting in the synthesis or expression of molecules which confer resistance. By conducting this slope-index analysis, we conclude that adding tilapia collagen may better mimic the growth characteristics of malignant disease while at the same time not significantly impacting the cellular response to a drug that the cancer cells are known from previous studies to be sensitive to. The key finding from our experiments is that there is a balance, perhaps even dosedependent phenomenon in the amount of collagen present between pro-growth and anti-growth effect in MCF7 cells. When there is too much collagen present, it causes a decrease in the proliferation of the cells. As we transition to look at how the cells respond to the cancer drug in different environments, we see clearly that each plate is affected by the cancer drug. However, 19 when 1 mg/ml of collagen was present, there were more viable cells following the cancer drug treatment. These findings give us insight into creating a better, more clinically-relevant model system for studying cancer cells in vitro, which is tremendously more efficient and less expensive than in vivo, much less clinical alternatives. Moreover, if our early, in vitro models are more in alignment with the other systems, then any significant findings in vitro will be more likely to be successful in vivo and in clinical trials, avoiding unnecessary false positive situations. If an institution uses collagen on their plates, the cells will be more robust and easier to study. We find from this study that 1.0 mg/ml is the ideal concentration of collagen to be effective from the three concentrations we observed. Another interesting thing to note is that when there is a lot of collagen present, the cells seem to do poorly, as noted in the colony forming assay. However, when we look at the MTS Assay, and how the cells in the 2.0 mg/ml plate reacted to the cancer drug in reference to the untreated plate reacting to the cancer drug, the plate with collagen had more surviving cells. This proves that the presence of any amount of collagen influences the cells growth. In relation to wound healing, this experiment proves more definitively that collagen has a huge impact on the growth of cells. While we were not able to perform a wound-healing assay, we can still draw from our data that cells perform better when collagen is present. Specifically, in reference to the MTS assay, we saw that there were more viable cells following the farnesol treatment when there was any amount of collagen present with the cells. Ultimately, the collagen either promoted drug resistance or the collagen helped with regrowth of surviving cells after the treatment. This is advantageous to doctors that specialize in burns because it reiterates the 20 important fact that collagen promotes cell proliferation and a patient can potentially see a faster recovery if collagen is directly involved in their healing process. In total, I would say that collagen is very influential in the growth of cells as mentioned in the introduction of this article. Many scientists have concluded that it can promote growth of keratinocytes to benefit wound healing and we have shown that it also influences cancer cells in a similar way. This study showed that there is an optimal concentration of collagen that promotes the most cell growth which will be beneficial moving forward. Knowing that 1.0 mg/ml had the best response among the cells allows for further tests to be done while allowing that variable to be held constant. Moving forward, I think it is important to test how other cancer drugs effect the growth of cells when collagen is present. While we can draw conclusions about what we think might happen to cancer cells within a person, we do not know for certain the various ways in which collagen effects a person. It could be important for future researchers to look at the effects of a collagen-rich diet versus heavy usage of collagen-rich products in relation to a persons cells. Growing cells on a collagen coated plate cannot be directly compared to the complex ways in which the human body uses collagen, but gaining a well-rounded understanding of how cancer cells think and act in different environments is helpful when treating patients that have cancer. While this study might not have a direct link to what cancer cells experience in vivo, it does tell us a lot about the environment cancer cells prefer and how they respond to changing environments. Moving forward, I think it would be helpful to also test different types of cancer cells to see how they react in the various environments. Gathering as much information as possible on the growth dynamics of cancer cells could help in determining the best course of action used to treat them in the future. 21 Reflection Overall, we were able to collect good data on the cells that we grew. We had a lot of difficulties in the beginning with our cells dying when we pulled them out of the liquid nitrogen tank. We also had a lot of issues with mold forming within our cells from the incubator. While we managed to overcome these difficulties, it did force us to change the scope of the project slightly. Unfortunately, we did not get to perform a wound-healing assay which wouldve helped us see if the collagen promoted the cells growing back together following a wounding event. We also were not able to get skin cells to use in the study. The project took a turn towards cancer cells because that is all we were able to grow, but we managed to gather some great data about how resilient the cells are and how collagen effects their growth. Working on this project was a great experience for me as a student because it promoted critical thinking and gave me an opportunity to apply my classwork. I really enjoyed developing the research plan and then watching it come to fruition. Having to adapt to the various issues that we encountered taught me a lot about the struggles of research and gave me a deeper appreciation for this process. 22 Bibliography 1. Sussman N. Why this Brazilian city uses tilapia fish skin to treat burn victims. PBS. 2017 Mar 3 [accessed 2019 Apr 14]. 2. Singh O, Gupta S, Soni M, Moses S, Shukla S, Mathur R. Collagen dressing versus conventional dressings in burn and chronic wounds: A retrospective study. Journal of Cutaneous and Aesthetic Surgery. 2011;4(1):12. doi:10.4103/0974-2077.79180 3. 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