Medicine, Department of
Obstetrics and Gynaecology, Department of
DSpace
UBCV
Allaire-Stacey, Genevieve Rose
Master of Science - MSc
University of British Columbia
More advanced and aggressive treatment for gynecological cancer leads to greater impacts on survivors’ quality of life, including sexual health, which is often overlooked. Indeed, cancer treatments have substantial effects on survivors’ sexual functioning and well-being, with most experiencing sexual difficulties as a result. These sexual difficulties can cause major distress and have significant impacts on the psychological well-being of survivors. There are few sexual health resources adapted to this population with unique needs. Therefore, the first 2 aims of this thesis are (1) to understand the lived realities of gynecological cancer survivors about sex after cancer, and (2) to adapt an existing online platform (eSense) delivering therapy to treat sexual difficulties to create eSense-Cancer, a new platform tailored to the needs and experiences of gynecological cancer survivors. Six patient partners were recruited to review the modules within eSense and provide written feedback regarding the changes required to better reflect their experience with sexual concerns and cancer. Once completed, we met over 3 sessions to further discuss their experiences and concerns regarding sexuality after cancer treatments as well as the necessary edits that would make eSense-Cancer more accessible and better reflective of the cancer experience. Our team, consisting of two research assistants and myself, then carried out a thematic analysis of the insights collected throughout the collaborative work to make concrete adaptations to the intervention along with registered psychologists, gynecological oncologists, a web developer, and a graphic illustrator. The third objective focused on creating a knowledge translation toolkit to disseminate the insights gleaned from the first phase of this thesis. The recommendations obtained during the patient engagement were identified as being applicable across a multitude of contexts and could serve to educate other healthcare providers who seek to create resources and interventions focused on sexual health after cancer for gynecological cancer survivors. Therefore, using the Knowledge to Action Framework, I created an informative toolkit which synthesized insights gained from our patient partners and produced a list of considerations. The longer-term goal of this work is to evaluate eSense-Cancer to determine its efficacy and appropriateness for this population.
USING PATIENT ENGAGEMENT AS A STRATEGY FOR ADAPTING AN ONLINE DIGITAL HEALTH TOOL FOR GYNECOLOGICAL CANCER SURVIVORS WITH SEXUAL DIFFICULTIES AND THE DISSEMINATION OF THE INSIGHTS GAINED FROM OUR COLLABORATION WITH PATIENT PARTNERS by Geneviève Rose Allaire-Stacey BA, McGill University, 2022 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Women+ and Children’s Health Sciences) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2025 © Geneviève Rose Allaire-Stacey, 2025 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: Using Patient Engagement as a Strategy for Adapting an Online Digital Health Tool for Gynecological Cancer Survivors with Sexual Difficulties and the Dissemination of The Insights Gained from our Collaboration with Patient Partners submitted by Geneviève Rose Allaire-Stacey in partial fulfilment of the requirements for the degree of Master of Science in Women+ and Children’s Health Sciences Examining Committee: Dr. Lori Brotto, Professor, Obstetrics and Gynecology, UBC Supervisor Dr. Katrina Bouchard, Assistant Professor, Obstetrics and Gynecology, UBC Supervisory Committee Member Dr. Lesa Dawson, MD, FRCSC Clinical Associate Professor, Obstetrics and Gynecology, UBC and Gynecologic Oncology, VGH Supervisory Committee Member Dr. Fuchsia Howard, School of Nursing, UBC Additional Examiner Additional Supervisory Committee Members: Dr. Geoffrey Cundiff, MD, Professor, Obstetrics and Gynecology, UBC Supervisory Committee Member iii Abstract More advanced and aggressive treatment for gynecological cancer leads to greater impacts on survivors’ quality of life, including sexual health, which is often overlooked. Indeed, cancer treatments have substantial effects on survivors’ sexual functioning and well-being, with most experiencing sexual difficulties as a result. These sexual difficulties can cause major distress and have significant impacts on the psychological well-being of survivors. There are few sexual health resources adapted to this population with unique needs. Therefore, the first 2 aims of this thesis are (1) to understand the lived realities of gynecological cancer survivors about sex after cancer, and (2) to adapt an existing online platform (eSense) delivering therapy to treat sexual difficulties to create eSense-Cancer, a new platform tailored to the needs and experiences of gynecological cancer survivors. Six patient partners were recruited to review the modules within eSense and provide written feedback regarding the changes required to better reflect their experience with sexual concerns and cancer. Once completed, we met over 3 sessions to further discuss their experiences and concerns regarding sexuality after cancer treatments as well as the necessary edits that would make eSense-Cancer more accessible and better reflective of the cancer experience. Our team, consisting of two research assistants and myself, then carried out a thematic analysis of the insights collected throughout the collaborative work to make concrete adaptations to the intervention along with registered psychologists, gynecological oncologists, a web developer, and a graphic illustrator. The third objective focused on creating a knowledge translation toolkit to disseminate the insights gleaned from the first phase of this thesis. The recommendations obtained during the patient engagement were identified as being applicable across a multitude of contexts and could iv serve to educate other healthcare providers who seek to create resources and interventions focused on sexual health after cancer for gynecological cancer survivors. Therefore, using the Knowledge to Action Framework, I created an informative toolkit which synthesized insights gained from our patient partners and produced a list of considerations. The longer-term goal of this work is to evaluate eSense-Cancer to determine its efficacy and appropriateness for this population. v Lay Summary Treatments for gynecological cancers are becoming more effective and more people live beyond the disease. For that reason, it is key to consider survivors’ quality of life, and specifically their sexual well-being because it is often ignored, even when most of them experience sexual difficulties because of their treatments. Also, the lack of available resources to treat these sexual concerns often limits patients’ access to care. My research adapted eSense (a website providing therapy to successfully treat sexual difficulties) to survivors’ unique experiences to create eSense-Cancer. I worked with six gynecological cancer patient partners for the review and the adaptation of eSense. Their experiences and recommendations were then used to inform the changes needed for the new program. What we learned from the patient partners was then used to create a guide for other healthcare providers who also want to create sexual health resources for survivors. vi Preface This thesis is largely original work by Geneviève Rose Allaire-Stacey, under the full supervision of Dr. Lori Brotto of the UBC Sexual Health Research Lab and with the collaboration of Dr. Kyle Stephenson of the Sexuality and Relationships Lab at Xavier University. The opportunity to adapt a branch of eSense as described in Chapter 2 was brought to me by Dr. Brotto to further the research on ovarian cancer survivors and bridge our interests for sexual health care in a cancer population. This opportunity to tailor the digital health intervention eSense, previously designed and tested for feasibility, usability and efficacy by Drs Brotto and Stephenson and their team, is the first phase of a multi-phase project to implement a dedicated digital health tool for gynecological cancer survivors. As part of the second chapter of this thesis, I was first responsible for creating eSense review material for six patient partners who would undergo an evaluation of the original program’s content. Once this work was completed, I was tasked to facilitate multiple group discussions with our partners to better understand the feedback provided in their examination of eSense and identify key recommendations for its adaptation. Two psychology undergraduate student volunteers trained in qualitative data analysis, Anilā Lacroix and Rukie Karov, joined me in the next part of this work. As a group, the three of us proceeded to code and analyse the entire qualitative material collected from our teamwork with patient partners to underscore the main aspects that required consideration in the creation of eSense-Cancer. Lastly, I proceeded with the full review and editing of the intervention alongside Drs. Brotto and Stephenson to implement the changes proposed by the patient partners and reflect the realities of gynecological cancer survivors who experience sexual difficulties as a result of their cancer and its treatment. What began with a collaboration of patient partners vii focusing on ovarian cancer survivors evolved into a larger, more inclusive adaptation representing the lived experience of gynecological cancer survivors of all types. Anilā, Rukie and I finally collaborated on the writing of the article presented in Chapter 2 which will be submitted to an academic journal in the upcoming months. Specifically, Anilā and Rukie participated in the writing of the background and methods and offered edits for the results and discussion sections which were written by me. The patient partner engagement with eSense was evaluated by the UBC Behavioural Research Ethics Board as quality improvement, and as such, a formal ethics board review was deemed unnecessary. Chapter 3 consists of my original work regarding the development of a toolkit for healthcare providers who seek to create their own resources or interventions regarding gynecological cancer survivors’ sexual health. Since no data collection was involved in the creation of this toolkit, ethics approval was deemed unnecessary. Beyond this thesis, I plan on disseminating the toolkit in collaboration with the Gynecological Cancer Initiative’s efforts to centralize survivorship resources for cancer care providers to access and implement in their survivorship care. Finally, generative artificial intelligence tools were not used to produce any significant aspect of this work. However, Grammarly, an AI-powered tool, was used at the very end of the writing process as editorial support to highlight and adjust surface-level grammar and vocabulary mistakes ahead of the submission of this thesis. viii Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ................................................................................................................................ v Preface ........................................................................................................................................... vi Table of Contents ....................................................................................................................... viii List of Tables ................................................................................................................................ xi List of Figures .............................................................................................................................. xii List of Abbreviations ................................................................................................................. xiii Acknowledgments ...................................................................................................................... xiv Dedication ................................................................................................................................... xvi Thesis Structure ............................................................................................................................ 1 Chapter 1: Background Regarding Gynecological Cancer Survivorship ............................... 2 1.1 Gynecological Cancer in Canada .......................................................................................... 2 1.2 Survivorship .......................................................................................................................... 4 1.2.1 Defining Cancer Survivors and the Period of Survivorship .......................................... 4 1.2.2 Gynecological Cancer Survivorship Concerns .............................................................. 7 1.3 Sexual Health Care After Cancer and its Treatment ............................................................. 8 1.3.1 Prevalence of Sexual Dysfunction After Cancer ......................................................... 12 1.3.2 Sexual Dysfunction in Ovarian Cancer ........................................................................ 13 1.3.3 Sexual Dysfunction in Uterine/Endometrial Cancer .................................................... 14 1.3.4 Sexual Dysfunction in Vaginal Cancer ........................................................................ 15 1.3.5 Sexual Dysfunction in Cervical Cancer ....................................................................... 15 1.3.6 Sexual Dysfunction in Vulvar Cancer ......................................................................... 17 ix 1.3.7 Psychological Outcomes of Sexual Dysfunction after Cancer .................................... 18 1.3.8 Relational Effects of Cancer and Sexual Problems ..................................................... 20 1.4 Treatments for Sexual Dysfunction .................................................................................... 23 1.4.1 Burden of Care and Barriers to Accessing Psychological Interventions ..................... 26 1.5 Digital Health Tools for Cancer Survivors ......................................................................... 27 1.5.1 eHealth Interventions to Treat Sexual Dysfunction ..................................................... 28 1.6 Patient Engagement in Research ......................................................................................... 31 1.7 Knowledge Translation for the Betterment of Survivorship Care ...................................... 34 Thesis Aims and Objectives ....................................................................................................... 37 Chapter 2: “Oh! You’re having sex?”: Understanding the Experience of Ovarian Cancer Survivors to Inform the Adaptation of eSense-Cancer, a Digital Health Platform Treating Sexual Difficulties After Cancer ................................................................................................ 38 2.1 Abstract ............................................................................................................................... 39 2.2 Introduction ......................................................................................................................... 41 2.3 Methods............................................................................................................................... 44 2.3.1 Patient Partners ............................................................................................................ 44 2.3.2 Procedure ..................................................................................................................... 45 2.3.3 Focus Group Sessions: Discussion Questions ............................................................. 47 2.3.4 Data Analysis ............................................................................................................... 50 2.4 Results ................................................................................................................................. 52 2.4.1 Research Question 1: What were gynecological cancer survivors’ experiences with cancer and sexuality? ............................................................................................................ 52 x 2.4.2 Research Question 2: In light of the findings from Part 1, how should an online digital sexual health intervention be modified to meet the needs of survivors? .............................. 67 2.5 Discussion ........................................................................................................................... 74 2.6 Strengths and limitations ..................................................................................................... 86 2.7 Conclusions ......................................................................................................................... 87 2.8 Implications for Psychosocial Providers and Future Considerations ................................. 88 Chapter 3: Developing a Toolkit to Facilitate the Creation of a Skills-Based Digital Platform for Sexual Health in Gynecological Cancer Survivors ............................................ 90 3.1 Translating Patient Partner Knowledge to the Greater Medical Community ..................... 90 3.2 Aim of Chapter 3 ................................................................................................................ 90 3.3 Knowledge Translation Framework ................................................................................... 91 3.4 Situating this Thesis within the Knowledge to Action Framework .................................... 92 3.5 Content of the KT Toolkit ................................................................................................... 99 Chapter 4: Conclusion .............................................................................................................. 121 4.1 Personal Reflections .......................................................................................................... 121 4.2 Strengths and Limitations ................................................................................................. 124 4.3 Conclusion ........................................................................................................................ 125 References .................................................................................................................................. 127 Appendix A: Sample of the Iterative Thematic Analysis Process ........................................ 158 Appendix B: Adaptation Categories ....................................................................................... 167 Appendix C: Adaptation Review and Recommendations ..................................................... 169 xi List of Tables Table 1 Discussion Questions for the Review of the CBT Arm ................................................... 47 Table 2 Discussion Questions for the Review of the MBT arm ................................................... 49 Table 3 Additional Illustrative Quotes from Patient Partners ....................................................... 65 Table 4 Excerpts from survivors on systemic barriers ................................................................ 102 Table 5 Excerpts from survivors about sex after cancer ............................................................. 110 Table 6 Excerpts from survivors on accessibility ....................................................................... 115 xii List of Figures Figure 1 Levels of patient and researcher engagement in health research ................................... 33 Figure 2 Research Question 1’s three key themes and the subtheme located at their intersection53 Figure 3 The two key themes and their intersecting subtheme addressing Research Question 2 68 Figure 4 Knowledge to Action framework ................................................................................... 92 xiii List of Abbreviations CBT Cognitive-behavioural therapy KTA Knowledge to Action KT Knowledge translation MBT Mindfulness-based therapy xiv Acknowledgments First and foremost, I would like to thank my supervisor, Dr. Lori Brotto, for giving me the opportunity to work on eSense-Cancer, a project that I hold dear in my heart, as well as for teaching me so many invaluable lessons over the course of this Master of Science. I would also like to give special thanks to my committee members, Drs. Lesa Dawson and Katrina Bouchard who have been present throughout my time in the Women+ and Children Health Science program and who have offered support, insight, encouragement and validation throughout. Thank you immensely. To my research assistants, Anilā Lacroix and Rukie Karov, thank you exceptionally for your aid in doing justice to the voices of the women on the eSense-Cancer advisory board. I truly could not have done this work without you. A sincere and truly special thank you to the six patient partners who dedicated many hours to this project. I can confidently say that the work that we have accomplished together in this partnership will continue to act as a compass and reminder to me as to the why of my calling in women’s healthcare. Your impact certainly has reached beyond eSense-Cancer. This research would also not have been possible without the Rivkin Foundation which has supported this project from its onset as well as provided funding for my work on eSense-Cancer. In addition, I would like to extend my gratitude to the Canadian Institutes of Health Research who saw the value in this work and supported my salary in part through the Canadian Graduate Scholarship – Master’s Award. I would like to give special thanks to all the members of the UBC Sexual Health Research Lab for their continued support over my time in the lab, as well as for the friends I have made along the way. xv Thank you to my mentor, Dr. Maria Cecilia Hwang, who has continued to provide insight and guidance as I navigate academia. An enormous thank you to my family and friends from near and far for your constant encouragement, support, and love during this season of my life. There are too many to name, but you have all helped me in ways that you cannot imagine. Milles merci à toi, maman, pour toutes les fois que tu as répondu à mes appels et que tu m’as appuyée dans les moments difficiles. To my cats, Chaï and Pomelo, thank you for having endured my thousands of emotional support cuddles. Your purrs have been extremely grounding and soothing in times of stress. Finally, my most special thank you goes to my partner, Jiachen Liang, who has been nothing short of supportive throughout this thesis work. Your constant love and care helped me get through this arduous endeavour and I’m so incredibly grateful for you. Thank you. xvi Dedication To my godmother Shelley, who is herself a cervical cancer survivor, and to all gynecological cancer survivors, past, present and future. 1 Thesis Structure This thesis outlines the process of patient partner engagement in program development through the creation of guidelines for practice in the knowledge translation domain. Chapter 1 covers the background information relevant to the aforementioned objectives, and includes details regarding gynecological cancer in Canada, the concept of survivorship and the gaps in its care, information on sexual dysfunction and well-being after gynecological cancer, treatment modalities for sexual difficulties in this population, digital health in the context of cancer care, patient engagement in research, and knowledge translation. As this is a thesis through publication, Chapter 2 consists of the journal article emanating from our first objective regarding our patient partner collaboration for the adaptation of eSense-Cancer. Then, in Chapter 3, the details of the knowledge translation efforts to communicate our learnings from the previous community involvement are described before presenting the toolkit’s content in its entirety. Finally, Chapter 4 contains the conclusion of this thesis which encompasses my impressions and learnings acquired through this work and a short discussion of the implications of this work at large. 2 Chapter 1: Background Regarding Gynecological Cancer Survivorship 1.1 Gynecological Cancer in Canada Statistics projected that 247,100 Canadians would be diagnosed with cancer in 2024 (Brenner et al., 2024). Moreover, it is estimated that 2 in 5 Canadians will be diagnosed with cancer in their lifetime (Canadian Cancer Society / Société canadienne du cancer, n.d.; Government of Canada, 2024). Based on prior trends, the most recent evaluations regarding the incidence of gynecological cancers for 2024 show that approximately 14,000 women would be diagnosed with either ovarian, cervical, uterine/endometrial or other female genital system cancers which include vulvar and vaginal cancers (Canadian Cancer Society, 2024a, 2024b, 2024d, 2024c, 2024e). In 2023, this comprised more than 11.5% of all new projected cancer cases in women (Canadian Cancer Statistics Advisory Committee & Canadian Cancer Society, 2023). In contrast, it has been estimated that less than 5000 would die from such cancers in recent years, leaving more than 9000 women surviving from gynecological cancers (Canadian Cancer Society, 2024a, 2024b, 2024d, 2024c, 2024e). Of note, the statistics presented in this section report incidence and death counts in Canadian women. However, the lack of guidelines for cancer screening in trans and gender-diverse individuals as well as the disparities in healthcare and medical services access for this population, suggests that these statistics could be higher (Canadian Cancer Society, n.d.-a; Sterling & Garcia, 2020; Ziegler et al., 2024). Fortunately, the incidence of most gynecological cancers has decreased since 2011 (Canadian Cancer Society, 2023). This is not the case for cervical cancer, however, which has shown to be trending upward in recent years. Indeed, the Canadian Cancer Society’s 2023 report (2023) on Canadian cancer statistics indicates that cervical cancer rates have seen the most significant increase since 1984. While the incidence of such cancer has been rising since 2015, 3 this new report notably characterizes cervical cancer as the fastest-rising cancer in people with a female anatomy (Canadian Cancer Statistics Advisory Committee & Canadian Cancer Society, 2023). Regarding the mortality rate, it has decreased for all types of gynecological cancers except uterine cancer (Canadian Cancer Statistics Advisory Committee & Canadian Cancer Society, 2023). Nevertheless, it should be noted that despite the overall decline in incidence and mortality rates for many gynecological cancers in Canada, the absolute number of new cancer cases and deaths overall has been increasing yearly (Brenner et al., 2024). On the other hand, survival rates are rising, and this can be attributed to improvements in early detection, rendering treatments more effective in the early stages of the disease (Brenner et al., 2024; Ellison & Saint-Jacques, 2023). While the prognosis for each gynecological cancer depends on multiple factors such as the person’s health history, the type of cancer diagnosed, the cancer stage at diagnosis, additional characteristics of the cancer, the treatment approach, and the tumour’s response to treatment, the general consensus is that the earlier it is detected, the higher the likelihood of survival (Canadian Cancer Statistics Advisory Committee & Canadian Cancer Society, 2023). Furthermore, with exceedingly effective cancer treatments overall, the rate of survival for those diagnosed with cancer continues to increase (Brenner et al., 2024; Statistics Canada, 2024). Consequently, a greater number of people live with and beyond cancer each year in Canada. In fact, it has been reported that “Canada’s survival rate is one of the highest among comparable high-income countries with universal healthcare systems” (Canadian Cancer Statistics Advisory Committee & Canadian Cancer Society, 2023, p. 75; Coleman et al., 2011; Walters et al., 2013). To put this into perspective, the 5-year net survival rate published for cervical cancer is 74%, while it is 82% for uterine cancer, 45% for ovarian cancer and 59% for all other female genital organ cancers (Canadian Cancer Society, n.d.-b, n.d.-d, n.d.-c, n.d.-e). 4 Put simply, these numbers denote the percentage of people diagnosed that will survive past the 5-year mark. In all cases, when the cancer is detected in earlier stages, the 5-year net survival rate increases. Therefore, with Canadian survival rates on the rise as a result of earlier detection and better treatments, it becomes imperative to consider the quality of life for all the gynecological cancer survivors who live beyond the disease. 1.2 Survivorship 1.2.1 Defining Cancer Survivors and the Period of Survivorship People diagnosed with cancer may identify with various labels – patient, fighter, survivor… The latter often tends to be assumed after cancer recovery or remission. Indeed, the conventional cancer trajectory accepted in medicine and academia involves the point of first diagnosis, followed by treatment and survivorship or palliative care, with a possibility of recurrence at any point after original treatment efforts. Specifically, there exists much disagreement over the definition of a cancer “survivor”, or the period commonly known as “survivorship”. As a matter of fact, despite the widespread use of the term in medical settings, support groups, and circles of people with cancer, there is a lack of consensus over the exact meaning of survivorship. The first instance where “survivor” was used to describe the period after being “cured” of cancer traces back to 1985 when Dr. Fitzhugh Mullan, then a cancer patient himself, self-described as a survivor after experiencing the particular lasting challenges that transpire when living beyond cancer. Subsequently, advocacy groups embraced the term to establish a positive framework around the act of “fighting” and overcoming cancer (Mullan, 1985). Since then, it has been widely accepted and employed in all spheres of the cancer world from medicine to research and supportive care organizations (Khan, Rose, et al., 2012). Nevertheless, the fact remains that 5 while some cancer patients appreciate the positive value associated with this term, others do not adhere to it because of the challenges that may endure past treatment, the grandiose nature of the word, and the possibility of recurrence and death due to cancer (Kaiser, 2008; Khan, Harrison, et al., 2012). Aside from the lack of agreement about the appropriateness of the term “survivor” among cancer patients, the public health and scientific fields have established their own definitions varying based on arbitrary time points at which one is considered in the survivorship stage of the disease (Khan, Rose, et al., 2012). A systematic review was conducted yielding 13 published definitions of ‘cancer survivor’ and 8 more for ‘survivorship’ (Marzorati et al., 2017). For instance, some definitions of ‘cancer survivor’ were as simple as “someone who has had cancer” or “People who have had a diagnosis of cancer for more than 5 years” to more elaborate ones such as “One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease (Marzorati et al., 2017, p. 230). In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life” (Marzorati et al., 2017). Concerning the period of survivorship, some definitions were uncomplicated and open-ended such as “Cancer survivorship is the experience to live with, through and beyond cancer” (Marzorati et al., 2017, p. 231). Others outlined precise boundaries as exemplified by the following explanation: “Cancer survivorship could be viewed (1) as a time frame, so it could be developed on the basis of type and stage of the disease (i.e., after 2, 5, or 10 years); (2) as an outcome like no evidence of disease, complete remission, or cured; (3) as a stage or phase and, in this case, we must consider if primary treatment are ended or there are any recurrence; or finally (4) as a 6 process where people live through different stages of illness.” (Leigh, 2008; Marzorati et al., 2017, p. 231) With these varying interpretations about when survivorship starts and ends, a question remains: How do we define survivorship and who is a survivor? Khan, Rose and Evans (2012) have acknowledged this predicament in their article which posits that the definition used should be operational and context-specific, leaving it up to researchers to offer a transparent account of the meaning employed in their work. In this thesis, I have chosen to adopt language around survivorship that resembles Lokich’s (2019) interpretation, inspired by the National Comprehensive Cancer Network’s definition, due to its inclusivity of all people with cancer. Indeed, Lokich (2019, p. 165) states that “any woman diagnosed with cancer is considered a cancer survivor from the time of diagnosis through the rest of her life.” In addition, she adds that “cancer survivorship includes the period of initial treatment, cancer-free survival, chronic or intermittent disease, and end of life care” (Lokich, 2019, p. 165). Hence, for the purposes of this thesis, this is the basis for the definition which will be used, as it endorses the idea that from the moment one is diagnosed, they immediately become someone surviving – as a continuous action – cancer, despite any presence of disease, whether it be a recurrence or terminal stage cancer. However, I am of the belief that it is important to recognize that one remains a survivor beyond death. Indeed, the meaning of surviving as an ongoing act implies that one is no less a survivor after death, even if caused by cancer, because they still survived for the period they lived with and beyond the disease; they will always remain a survivor from the time they were diagnosed, onwards. Finally, on the basis of inclusivity, I prefer to avoid using gendered language as any person with a female reproductive system may experience gynecological cancer. Therefore, I offer this alternative 7 definition: a cancer survivor is any person diagnosed with gynecological cancer from the moment of diagnosis through the rest of their life and beyond. Finally, I endorse Lokich’s definition of survivorship as stated above as complete and inclusive in its meaning. 1.2.2 Gynecological Cancer Survivorship Concerns With more people living after cancer and its treatments, it becomes essential to understand the reality experienced by cancer survivors in the survivorship stage of the cancer trajectory. Indeed, quality of life, a central tenet of survivorship, has been extensively studied throughout the years to understand the unique challenges faced by survivors of gynecological cancers (Ferrell et al., 2005; Fischer et al., 2019). Further, treatments for cancers affecting the female reproductive system are often aggressive and may result in many distressing consequences which can linger beyond the active treatment stage (Fischer et al., 2019; Lokich, 2019; Wenzel et al., 2002). The literature on the impacts of treatment is vast and demonstrates that survivors must manage many biopsychosocial outcomes that negatively affect their quality of life. These are as varied as chronic pain, neuropathy, lymphedema, urinary and bowel difficulties, menopausal symptoms, fatigue, anxiety, depression, post-traumatic stress disorder symptoms like hyper-arousal, intrusive thoughts, and avoidance, fear of recurrence or follow-up diagnostic tests, sleep disturbances, brain fog, limited productivity, loss of work, financial stress, fertility concerns, sexual health problems and interpersonal problems (de Rooij et al., 2018; Hodgkinson et al., 2007; Lokich, 2019; Nekhlyudov et al., 2019; Trivers et al., 2013; Wenzel et al., 2002; Westin et al., 2016). Unfortunately, it has also been shown that distress associated with the impacts of cancer and its treatment does not consequentially diminish with time (Hodgkinson et al., 2007). With such a wide range of needs that require ongoing support, survivorship care 8 should be multidisciplinary and intended to manage and address the negative impacts they have on survivors’ overall quality of life and well-being (Aaronson et al., 2014; Hui et al., 2013). The pervasiveness of the negative impacts of cancer and its treatment on quality of life calls into question the importance of each concern and the perceived need for supportive care around such issues. Thus, a study by Westin and colleagues (2016) aimed at ranking the most common health issues experienced by survivors of gynecological cancer showed fatigue and sleep disturbances as well as sexual dysfunction as the most prevalent in this sample, regardless of cancer type. Meanwhile, others have found that sexual function, pelvic floor concerns and interpersonal difficulties are amongst the leading preoccupations in survivors of gynecological malignancies and necessitate further emphasis after treatment (Juraskova et al., 2003; Nekhlyudov et al., 2019; Wenzel et al., 2002). Despite the prominence of sexual concerns in this population, the literature shows that patients are most often not made aware of these sequelae by their healthcare providers (Aerts et al., 2012; Fischer et al., 2019; Stead et al., 2003, 2007). Indeed, survivors of gynecological malignancies have repeatedly stressed their demand for information about sexual health after cancer and have reiterated that additional details should be made available to survivors (Hodgkinson et al., 2007; Juraskova et al., 2003; McCallum et al., 2012; E. R. Park et al., 2009). However, communication about sexual difficulties arising from surgery, chemotherapy, and radiation is infrequent and sporadic according to survivors who seldom recall having discussed this topic with members of their healthcare team (Catt et al., 2005; A. Cox et al., 2006; E. R. Park et al., 2009; Stead et al., 2001, 2003). This highlights a significant gap in care which ought to be addressed by healthcare providers. 1.3 Sexual Health Care After Cancer and its Treatment 9 Despite numerous studies evaluating supportive care efforts, especially around sexual well-being, as well as the growing focus on guidelines and best practices with regard to ongoing care, survivors’ needs have yet to be met entirely (Campbell et al., 2019; Carney et al., 2024; Cowens‐Alvarado et al., 2013; de Rooij et al., 2018; Nekhlyudov et al., 2019). To further this point, healthcare services and follow-ups after the end of treatment and into the remission phase tend to decline with time, leaving survivors to manage these persistent sequelae of treatment on their own (Hodgkinson et al., 2007). One qualitative study involving both patients and healthcare providers alike advocates for the planning and delivery of an ongoing survivorship care plan, specifically targeting side effects and psychological impacts of cancer, as a result of the participants expressing the need for support throughout the cancer trajectory (de Rooij et al., 2018). Moreover, all but one patient in the same study communicated the need for additional information and resources addressing any lingering healthcare needs after the end of treatment (de Rooij et al., 2018). This is in line with previous literature on the subject, which indicates a need for additional information, reporting survivors’ frustration with the lack of support and knowledge given to them after cancer treatment (Hodgkinson et al., 2007; Sanson-Fisher et al., 2000; Trivers et al., 2013). In fact, it has been shown in a sample of ovarian cancer survivors that when they feel validated in their experience, believe in their ability to communicate with their healthcare provider, and are satisfied with the information provided by their healthcare team, their overall well-being and quality of life improved (Arraras et al., 2022; Brédart et al., 2015; Champion et al., 2007; Lockwood-Rayermann, 2006; Trivers et al., 2013). Accordingly, researchers have questioned how best to address supportive care needs in cancer survivors and approaches differ based on multiple factors such as type of cancer, treatment severity, and most pressing concerns (A. Cox et al., 2006; de Rooij et al., 2018; Sanson-Fisher et al., 2000). This 10 raises the question of the timing for the provision of survivorship-related information and resources by providers to patients (Boyajian et al., 2014). Indeed, some favour receiving information on a need basis or at precise moments of the cancer trajectory, while others prefer obtaining information throughout the cancer journey (Boyajian et al., 2014). Hence, the optimal approach to survivorship care and education around survivorship concerns should be patient-specific and tailored to their needs (Boyajian et al., 2014; de Rooij et al., 2018; Hodgkinson et al., 2007). While healthcare providers agree that supportive care regarding sexual health must be provided to patients, it is often the case that this service is limited, incomplete or outright inexistent (Carr, 2015; E. R. Park et al., 2009; Stead et al., 2003). In fact, despite the interest in providing such care to survivors, healthcare providers remain acutely aware of the deficiencies which perpetuate the issue surrounding the lack of proper survivorship care planning with patients. Indeed, in the study by de Rooj et al. (2018), they cited limited time for clinical interactions, lack of known resources to present to patients and worry that any serious discussion about the effects of cancer could frighten patients and increase their anxiety. This is in line with other studies which demonstrate that time pressures and lack of knowledge on the providers’ end often impede adequate communication (Trivers et al., 2013; Wiggins et al., 2007). Beyond physicians’ limited education regarding sexual health, and their unfamiliarity with the subsequent sexual difficulties due to cancer, as well as their insufficient understanding of available treatments, their sense of shame and embarrassment impede effective communication about sexual health after cancer (Beebe et al., 2021; Sekse et al., 2015; Stead et al., 2003). Indeed, despite the advancement and normalization of sexual health in healthcare, the topic remains stigmatized, and many healthcare providers still neglect any discussion on the matter 11 due to these personal sentiments and discomfort (E. Greimel et al., 2018; Julien et al., 2010; Kotronoulas et al., 2009). This holds true for survivors too; stigma and fear of embarrassment remain a barrier to accessing care for those who experience sexual morbidities as they may feel ashamed to raise the subject with their physician (Bodurka & Sun, 2006; McCallum et al., 2012; Schaller et al., 2020; Stead et al., 2001, 2003). Biases and preconceptions in healthcare providers are also a reality that survivors must endure (Carr, 2015; Kotronoulas et al., 2009; Paulsen et al., 2023). Certainly, there continue to be societal misunderstandings about sex in the context of illness, and physicians remain prone to judgements concerning the importance of sexuality in the lives of their patients, especially when they enter the palliative stage of the cancer trajectory (Carr, 2015). Furthermore, there are inconsistent perspectives regarding the responsibility of different healthcare providers in communicating supportive care information to survivors (de Rooij et al., 2018; Stead et al., 2003). To this effect, the study by de Rooij et al. (2018) also revealed that despite oncologists’ willingness to provide such care to their patients, they were inclined to delegate this work to support staff as a means of circumventing the greater clinical burden this would demand, given the already limited time allocated to each patient-physician interaction. Conversely, nurses have been shown to defer to patients’ treating physicians to address questions and concerns related to matters such as sexual difficulties after cancer, effectively deflecting the request for information from their patients (Julien et al., 2010). Hence, such barriers effectively put additional strain on cancer care in relation to sexual well-being after cancer. Finally, the lack of clear support for gynecological cancer survivors’ sexual health and wellness has significant impacts on their overall psychological well-being, especially when these consequences occur due to essential treatments (Andersen, 1993; Johnson et al., 2010; Matulonis 12 et al., 2008; Tracy et al., 2016). Indeed, paired with the distress associated with having sexual difficulties, the lack of resources and support leaves survivors under additional stress that could be mitigated through greater education and resource allocation (Stead et al., 2003). Therefore, while the literature asserts the need for greater supportive care surrounding the sexual consequences of cancer and its treatment, the fact remains that many barriers continue to prevent patients from obtaining evidence-based care. 1.3.1 Prevalence of Sexual Dysfunction After Cancer The prevalence of sexual dysfunction in gynecological cancer is estimated to be between 40% and 100% (Brotto et al., 2010; Wiggins et al., 2007); however, estimates of prevalence can often be attributed to the evaluation of diverse outcome measures or the analysis of heterogeneous samples that vary in cancer types, age at diagnosis, and treatment modalities, all of which have been shown to influence sexual functioning outcomes (Abbott-Anderson & Kwekkeboom, 2012). Sexual difficulties have also been shown to be underreported meaning that the true prevalence could be greater (Huffman et al., 2016; Serati et al., 2009; Valpey et al., 2019). For example, a systematic review of the prevalence of sexual dysfunction following cervical cancer demonstrated that 80% of survivors experienced some form of dysfunction, while another study which included cervical and ovarian cancer patients reported that 60% of the participants had difficulties in at least one of the eight sexual function domains assessed (Qian et al., 2023; Wettergren et al., 2022). An additional study examining sexual problems in endometrial cancer survivors reported that up to 90% of survivors face sexual difficulties as a result of their treatments (Lokich, 2019; Onujiogu et al., 2011). Finally, it has also been evaluated that 83% of gynecological cancer survivors who had undergone pelvic surgery met the criteria for sexual dysfunction and that they usually reported multiple sexual concerns (Aerts et 13 al., 2009). Indeed, sexual difficulties rarely occur in isolation as survivors tend to experience multiple sexual complications (Aerts et al., 2009). Sexual dysfunctions among gynecological cancer survivors are often well above the rate among the general population, which is approximately 43% of women (Abbott-Anderson & Kwekkeboom, 2012; Audette & Waterman, 2010; Boa & Grénman, 2018; Laumann et al., 1999; Wettergren et al., 2022). This is because surgical interventions such as oophorectomies, vulvectomies and hysterectomies, as well as radiation and chemotherapies, may cause physical, psychological and hormonal changes, including iatrogenic menopause in patients. Consequently, this can increase the possibility of sexual difficulties beyond what is experienced by women without cancer (Audette & Waterman, 2010; Fischer et al., 2019; Wettergren et al., 2022). In the next section, the characteristics of sexual concerns in five specific gynecological cancers are reviewed. 1.3.2 Sexual Dysfunction in Ovarian Cancer In ovarian cancer, malignancies frequently occur in older women and tend to be diagnosed in later stages (Boa & Grénman, 2018; Lokich, 2019). Treatments include aggressive surgery and tumour debulking including hysterectomy (sometimes radical), bilateral salpingo-oophorectomy, omentectomy, and/or lymphadenectomy, followed by chemotherapy, which lead to significant health challenges and sexual functioning difficulties (Boa & Grénman, 2018; Krychman et al., 2006). Chemotherapy treatments can occur before or after surgery depending on the treatment plan and for young premenopausal patients which comprise 13.3% of diagnosed cases in people under 45 years old, in the event of both ovaries being removed, premature (iatrogenic) menopause ensues (National Cancer Institute, n.d.; Boa & Grénman, 2018). Therefore, these treatments may significantly impact ovarian cancer survivors’ sexual 14 functioning, including increased vaginal dryness as a result of ovarian removal, as well as heightened pain or discomfort with penetration, and lower sexual interest and desire (Boa & Grénman, 2018; Trivers et al., 2013). Surgery can also produce arousal difficulties from potential damage to the pelvic sensory nerves and the dyspareunia experienced by survivors resulting from a shortened vagina following a total hysterectomy (Audette & Waterman, 2010). Ovarian cancer survivors may also experience anorgasmia, and this may be explained by the lack of lubrication, nerve damage and pain, causing these difficulties with orgasm (Audette & Waterman, 2010; Mayer et al., 2019). For the purposes of a comprehensive review of the various gynecological cancers’ treatment types and sexual outcomes, I now summarize the reality of each cancer type below. 1.3.3 Sexual Dysfunction in Uterine/Endometrial Cancer Endometrial cancer tends to be diagnosed in postmenopausal women, aged 60 years old on average (American Cancer Society, 2025; Boa & Grénman, 2018). Surgery remains the first line of treatment for endometrial cancer and patients primarily receive a total hysterectomy with a bilateral salpingo-oophorectomy (Boa & Grénman, 2018; The American Cancer Society, 2022). In some cases, surgical staging with selective pelvic and para-aortic lymph node dissection may also be performed (American Cancer Society, 2019; Boa & Grénman, 2018). Additionally, radiation may sometimes be used as an adjuvant treatment to decrease the chances of potential recurrences (American Cancer Society, 2019). There is little research that specifically evaluates the sexual difficulties associated with endometrial cancer (Aerts et al., 2015). While endometrial cancer survivors may not experience much change in their sexual functioning after their operation as opposed to pre-surgery, the rate of sexual dysfunction in this specific population compared to healthy controls has been shown to be significantly higher 15 (Aerts et al., 2015). The sexual concerns experienced postoperatively by these survivors include pain with penetration, low sexual desire and arousal, and anorgasmia, however, these have been shown to improve over time (Aerts et al., 2015; Carter et al., 2012). Chemotherapy may be required in advanced stages of the disease; thus, it is conceivable that adverse effects of this treatment (e.g., fatigue, anxiety, body image issues, etc.) may occur in this population and ultimately impact sexual interest and desire (Aerts et al., 2015; Audette & Waterman, 2010). 1.3.4 Sexual Dysfunction in Vaginal Cancer Vaginal cancer is a rare form of gynecological cancer and little research has been done regarding sexual dysfunction after its treatment (Lindau et al., 2007; Oveisi et al., 2023). One qualitative study of vaginal cancer survivors showcased their stories in the analysis because this perspective has been largely missing in research (Oveisi et al., 2023). Treatment for vaginal cancer includes targeted vaginal radiation called brachytherapy, which leads to decreased blood supply and elasticity of the vagina, potentially causing narrowing, stenosis and fragility of the tissues (Oveisi et al., 2023). Furthermore, half of the participants with vaginal cancer reported no longer having sex as a result of treatment and the overwhelming genital pain it produced. Surgical procedures to remove tumours in the vagina may also cause nerve damage, scarring, vaginal dryness, loss of elasticity in the vaginal canal, and fibrosis, all of which can lead to pain with intercourse (Cakar et al., 2013; Kpoghomou et al., 2021; Lindau et al., 2007). Unfortunately, much remains to be evaluated in this population of gynecological cancer survivors, especially pertaining to sexual health. 1.3.5 Sexual Dysfunction in Cervical Cancer Cervical cancer, the most prevalent gynecological cancer, and many cervical malignancies tend to be diagnosed in early stages and in younger individuals (Boa & Grénman, 16 2018; Lokich, 2019). Treatments for cervical cancer predominantly involve surgery and radiation, but chemotherapy may also be administered for more advanced cases (Boa & Grénman, 2018). Surgical interventions may include cervical conization, radical trachelectomy, or simple or radical hysterectomy, with potentially a pelvic lymphadenectomy (Boa & Grénman, 2018). The effects of surgery may resemble those experienced by ovarian cancer survivors and may be experienced momentarily or chronically (Boa & Grénman, 2018). In a longitudinal study of cervical cancer survivors, it was concluded that problems with orgasm, discomfort with penetrative sex due to a shortened vagina, severe sexual pain, low sexual satisfaction and interest, and lack of lubrication were experienced by survivors in the first two years following surgery (Fleming et al., 2016; Jensen et al., 2004). This resulted in decreased sexual frequency in this sample. It was also determined that survivors experienced an enduring lack of sexual interest and persistent problems with vaginal lubrication well after other symptoms resolved. Moreover, numbness in the genital region and lymphedema contributed to altered sexual functioning (Boa & Grénman, 2018). For young patients, acute premature surgical menopause related to oophorectomy at the time of surgery or pelvic radiation further exacerbates sexual dysfunction. It is interesting to note that similar to endometrial cancer survivors, a study looking at the impacts on sexual function in people with cervical cancer demonstrated that despite a significant decline after surgery, levels of functioning seemed to improve between 6 months to a year post-operation (Pieterse et al., 2013). However, survivors’ sexual functioning scores never reached those of healthy controls in the follow-up period (Pieterse et al., 2013). Nonetheless, the effects of these sexual difficulties did have prolonged effects on survivors’ emotional well-being throughout the 4-year study (Pieterse et al., 2013). 17 Besides surgical interventions, radiation and chemotherapy may also impact cervical cancer survivors, and these may have significant impacts on sexual health. Radiation can cause vaginal stenosis, and/or atrophy and the limited flexibility and decreased lubrication resulting from this process may cause dyspareunia and bleeding with intercourse (Audette & Waterman, 2010). People who undergo radiation therapy can also develop fistulas or abscesses in the genital region, bleeding, as well as bladder and bowel issues (Audette & Waterman, 2010). Conversely, chemotherapy can significantly impact estrogen production by chemically damaging the ovaries which can result in menopausal symptoms such as difficulty with lubrication, loss of sexual interest, desire and arousal, anxiety, depression and body changes leading to body image concerns (Audette & Waterman, 2010). There is also evidence that survivors who are treated with primary and adjuvant radiation therapy in addition to surgical interventions are more likely to experience sexual dysfunction than those undergoing surgery alone or surgery paired with chemotherapy (E. R. Greimel et al., 2009). Radiation appears to significantly influence sexual functioning in cervical cancer survivors (Frumovitz et al., 2005; E. R. Greimel et al., 2009). 1.3.6 Sexual Dysfunction in Vulvar Cancer Of the gynecological cancers, vulvar cancer accounts for the smallest number of cases (Lokich, 2019). Unlike other gynecological malignancies, vulvar cancer is external and is treated with wide local excision, a partial or radical vulvectomy, and possibly a unilateral or bilateral inguinal lymph node dissection, in addition to radiation and chemotherapy (Boa & Grénman, 2018; The American Cancer Society, 2018). Unfortunately, little research has been conducted to understand the sexual consequences of vulvar cancer treatments, as most research has focused on other types of gynecological cancer (Aerts et al., 2012; Malandrone et al., 2021). However, the research that has been done has revealed that the effects of vulvar cancer on sexual functioning 18 include bleeding, entry and deep dyspareunia, pain in the abdomen during sexual activity, nerve and blood vessel damage, and anorgasmia, all of which lower survivors’ quality of life substantially (Aaronson et al., 2014; Aerts et al., 2012; Boa & Grénman, 2018). Moreover, vulvar cancer raises issues with regard to body image as vulvar surgeries, which involve removing skin and fat tissue of the labia, clitoris and perineum, can considerably alter the physical appearance of the vulva (Aerts et al., 2012; Andersen, 1993; Audette & Waterman, 2010; Malandrone et al., 2021). Sexual desire, arousal, and satisfaction also decrease after treatment (Aerts et al., 2012; Andersen & Hacker, 1983; Weijmar Schultz et al., 1986). Finally, most studies conducted with vulvar cancer survivors were retrospective, but their conclusions coincided: sexual functioning was significantly decreased after treatment whether it be surgery, radiation or chemotherapy (Aerts et al., 2012; Green et al., 2000; Janda et al., 2004; Moth et al., 1983). 1.3.7 Psychological Outcomes of Sexual Dysfunction after Cancer The literature on the psychological effects of sexual difficulties in gynecological cancer survivors is vast. Psychological repercussions of a gynecological cancer diagnosis paired with the sexual dysfunction arising from treatment interact with one another to cause further distress in survivors. Indeed, the experience of physical sexual difficulties (e.g. pain or loss of arousal) frequently gives rise to psychological distress in survivors, while negative psychological outcomes of cancer also exacerbate sexual difficulties (Boa & Grénman, 2018). In fact, psychological symptoms, such as anxiety and depression, have been shown to be correlated with sexual functioning (Bodurka & Sun, 2006; Carmack Taylor et al., 2004). Specifically, depression was negatively correlated with sexual satisfaction and functioning whereas it was positively correlated with discomfort (Carmack Taylor et al., 2004). Lower sexual frequency was also 19 associated with higher levels of depression (Carmack Taylor et al., 2004). The same results were shown with anxiety. Furthermore, psychosocial factors including body image, partner issues such as fatigue and lack of sexual interest, as well as physical problems hindering sexual activity, exacerbated these results (Carmack Taylor et al., 2004). Therefore, addressing the sexual concerns of survivors can not only improve their quality of life, but it can also greatly improve their mental health as well (Bodurka & Sun, 2006). Moreover, it is possible that the suddenness of diagnosis and treatment leaves survivors overwhelmed and without much time to process the changes occurring as a result of cancer. This can contribute to trauma and feelings of grief, anxiety, and depression in survivors, thus affecting their interest in sex (Abbott-Anderson & Kwekkeboom, 2012; Fischer et al., 2019). Anxiety and fear related to intercourse after cancer treatments were also prominent concerns featured in the literature (Abbott-Anderson & Kwekkeboom, 2012; Bodurka & Sun, 2006; Roussin et al., 2023). Worries about their sexual performance and insecurities related to resuming sexual activity after cancer tend to afflict those who are in remission as they navigate a return to normalcy (Juraskova et al., 2003; S. Y. Park et al., 2007). Most notably though, the fear of pain during intercourse or fear of a recurrence due to sex were strong deterrents for survivors who were inclined to avoid sex because of these significant concerns (Bodurka & Sun, 2006; Buković et al., 2008; Stead et al., 2007; Stewart et al., 2001). Additionally, survivors reported that their sense of self as a woman was negatively affected by their cancer (Abbott-Anderson & Kwekkeboom, 2012; Bourgeois-Law & Lotocki, 1999; Juraskova et al., 2003; Rasmusson & Thomé, 2008). This could be due to their view of fertility as it relates to femininity, womanhood and sexuality whereas losing their ability to have children because of surgery rendered them less womanly (Abbott-Anderson & Kwekkeboom, 20 2012; Cleary & Hegarty, 2011; Fischer et al., 2019; Juraskova et al., 2003; Sacerdoti et al., 2010). Further, one’s self-concept and associated negative feelings toward their body have been associated with impaired sexuality (Abbott-Anderson et al., 2020; Abbott-Anderson & Kwekkeboom, 2012; Bourgeois-Law & Lotocki, 1999; Fischer et al., 2019; Sacerdoti et al., 2010). One recent study demonstrated that the decrease in sexual desire due to cancer treatments severely affected survivors’ sense of self-worth and femininity (Levkovich et al., 2023). Taken together, it becomes evident how psychological variables are associated with sexual interest and satisfaction in survivors who contemplate reassuming their sexual lives and selves. 1.3.8 Relational Effects of Cancer and Sexual Problems Unsurprisingly, sexual difficulties after cancer also impinge upon survivors’ intimate relationships (Abbott-Anderson & Kwekkeboom, 2012; Sacerdoti et al., 2010). It has been noted that in the throes of cancer treatments, partners may come to be extremely attentive to their partner’s needs and sensitive to the effects of cancer on their well-being which have been shown to further strengthen relationships, or they can retreat and pull away from the relationship, causing conflicts (Abbott-Anderson et al., 2020; Buković et al., 2008; Cleary & Hegarty, 2011; Levkovich et al., 2023; Stead et al., 2007). Indeed, while the divorce or separation rate in couples in which one partner is affected by cancer remains similar to those in the general population, more than half of these couples who experience the dissolution of their relationship state cancer as a contributing factor (Nalbant et al., 2018). Moreover, it has also been shown that the sex of the partner with cancer is a significant predictor of divorce or separation. In fact, heterosexual relationships in which the woman is diagnosed with cancer have a six times greater chance of dissolution compared to those in which the man carries the diagnosis (Glantz et al., 2009). One of the more distressing effects in the relationship is the sense of burden a survivor feels when 21 their partner expresses a wish for sexual activity after treatment ends (De Groot et al., 2007). Indeed, whether this is the case or not, survivors may perceive this increased interest in sexual activity as an unmet need on their partner’s part, which their concerns with sex may leave them unable to satisfy, leading to feelings of pressure and guilt (Cleary & Hegarty, 2011; Flynn et al., 2011; Juraskova et al., 2003). Conversely, sometimes, the lack of sexual activity is a result of survivors’ partners’ own fears of hurting their loved ones during sex (Juraskova et al., 2003). Indeed, there is evidence that partners of survivors may wait for the survivor partner to initiate sexual activity with them because of this worry that they may cause additional undue pain (Juraskova et al., 2003). Unfortunately, this sexual distance by partners can result in survivors feeling unwanted and undesirable, causing further anxiety that they are no longer worthy of sex (Abbott-Anderson & Kwekkeboom, 2012; Juraskova et al., 2003; Whicker et al., 2017). With all the changes occurring to survivors’ sexuality after cancer, many worried about their partner’s perception and tolerance towards altered sexual relations post-cancer (Juraskova et al., 2003). In a qualitative study by Sacerdoti and Lagana (2010), the authors conceptualize the return to a “sexual equilibrium” within relationships as taking months to years, and it is during this period when survivors work to reestablish a sense of their sexual selves where frictions are likely to occur within relationships (Cleary & Hegarty, 2011; Stead et al., 2007; Whicker et al., 2017). The sexual difficulties resulting from cancer thus pose a threat to survivors’ relationships and many worry about its breakdown and potential end (Abbott-Anderson & Kwekkeboom, 2012). To circumvent these distressing consequences, studies have repeatedly established that support and effective communication between partners is not only desired by survivors but 22 required for the well-being of their relationships (Abbott-Anderson & Kwekkeboom, 2012; Cleary et al., 2011; Pernelle et al., 2021). These frank discussions with partners were shown to be important to develop a mutual understanding of the sexual changes that might occur following cancer treatments, in addition to the desired type of touch or physical act that survivors appreciated, their fears regarding intercourse, and their feelings about their appearance and changed bodies (Flynn et al., 2011). Likewise, in a qualitative study by Abbott-Anderson and colleagues (2020), survivors felt that open communication could help redefine what was now sexually pleasurable for them as well as any acts that should be avoided. However, despite the need for clear communication around feelings and expectations between partners, gynecological cancer survivors have expressed that this remains a challenge as they learn to navigate their sexuality after cancer treatments (Bourgeois-Law & Lotocki, 1999; Cleary et al., 2011). Often, this was due to survivors not knowing how to articulate their feelings with their partner, or because partners were not receptive to such dialogue (Abbott-Anderson et al., 2020). Nonetheless, many have found that reimagining sex and intimacy within the relationship through honest discussions between partners can bring much relief as survivors navigate sexuality after cancer (Flynn et al., 2011; Roussin et al., 2023). Indeed, survivors articulated the need for intimacy to be understood as more than physical sexual acts, and include simply kissing, holding each other, and general signs of affection (Butler et al., 1998; Cleary & Hegarty, 2011). In fact, in a study looking at cervical and endometrial cancer survivors, intimacy led to greater satisfaction with regard to their sexual relationships than aspects of physical intercourse itself (Juraskova et al., 2003). Ultimately, improving communication and emotional intimacy can increase relationship satisfaction and sexual quality of life for gynecological cancer survivors 23 who may experience the negative consequences of sexual difficulties within their relationships (Roussin et al., 2023). 1.4 Treatments for Sexual Dysfunction The literature offers a variety of recommendations for the improvement of survivors’ sexual function. Medical treatments and physical therapies are available to address the physical symptoms related to sexual difficulties. However, these often do not address the psychological and social/relational features that hinder survivors’ sexuality. Regarding these latter aspects of sexual dysfunction following cancer treatments, some suggest that proper information from clinicians on the potential sexual consequences of treatment may increase psychological and sexual adjustments and distress in survivors, while others advocate for communication and sensate focus training with one’s partner as a means of restoring sexual function (Boa & Grénman, 2018; Bodurka & Sun, 2006; Buković et al., 2008; Carmack Taylor et al., 2004; Juraskova et al., 2003). The following sections review the current literature on evidence-based treatments for improving sexual health in gynecological cancer survivors. The following section will be divided into physical, hormonal, and psychological therapies. Pelvic floor physiotherapy. One mode of treatment for sexual concerns involves physical therapy. Indeed, pelvic floor physiotherapy helps with the management of physical changes in the vaginal canal after surgical interventions and radiation therapy (Cyr et al., 2022). These cancer treatments can scar the internal walls of the vagina and tissues may become rigid causing pain with penetration (Boa & Grénman, 2018). Indeed, a secondary increase in pelvic muscle tone, otherwise called a hypertonic pelvic floor, can occur in survivors whose pelvic muscles remain tense and are unable to relax. This can lead to conditions such as vaginismus where the muscles may involuntarily spasm and tighten which causes pain with penetration (Katz, 2009). 24 Moreover, vaginal stenosis (defined as the narrowing or shortening of the vaginal canal due to scar tissue formation) is a common occurrence in gynecological cancer patients who receive surgery and radiation (Audette & Waterman, 2010). Therefore, stretching the tissue inside of the vagina on a regular basis with the use of vaginal accommodators and vibrators can help maintain vaginal elasticity and capacity as well as help breakdown the scar tissue (Boa & Grénman, 2018; Bodurka & Sun, 2006; Carr, 2015). It has been shown that vaginal accommodators may help reduce radiation-induced vaginal stenosis when used consistently as early as 2 weeks after the end of radiation therapy treatments (Miles & Johnson, 2014). This works by preventing adhesion of vaginal tissue as it heals (Coady & Kennedy, 2016). Unfortunately, it is recommended that these exercises be maintained for at least a year, with recommendations to continue indefinitely, but this has proven to be difficult for gynecological cancer survivors (Bakker et al., 2015; Coady & Kennedy, 2016). Indeed, persevering with insertion exercises proves to be challenging due to the lack of regular follow-up care when in remission and the psychological and emotional repercussions associated with a practice that may induce pain at first (Bakker et al., 2015; Boa & Grénman, 2018; Carr, 2015; Coady & Kennedy, 2016; Cullen et al., 2012). Therefore, it has been suggested that follow-up with a pelvic floor physiotherapist be standard in survivorship care as it can significantly improve dyspareunia and general sexual function in survivors (Boa & Grénman, 2018; Carr, 2015; Coady & Kennedy, 2016). Hormone therapy. Many cancer survivors will have undergone surgery or chemotherapy which may result in hormonal dysregulation, especially with temporary or permanent damage to the ovaries that occurs due to treatment (Audette & Waterman, 2010; Coady & Kennedy, 2016). This is what is called an iatrogenic menopause. Reduced estrogen and androgens, which are fundamental for sexual functioning in people with a female reproductive system, can contribute 25 to reduced sexual interest and arousal (Audette & Waterman, 2010). Lack of lubrication and vaginal atrophy which may subsequently cause pain with penetration, can also occur with hormonal changes after cancer treatment (Audette & Waterman, 2010; Coady & Kennedy, 2016). Hence, hormone replacement therapy can help alleviate some of the effects of premature menopause, by countering the common menopausal symptoms. In addition, a variety of low-dose topical hormones can also be prescribed to help alleviate any irritation, drying, and damage to the vulvovaginal tissues that lead to dyspareunia (Boa & Grénman, 2018; Bodurka & Sun, 2006; Carr, 2015; Coady & Kennedy, 2016). Nevertheless, it is important to note that hormone use is contraindicated in some tumour types, so not all survivors may receive the benefit of treatments. Fortunately, hormone use is safe and recommended for most premature menopause survivors (North American Menopause Society, 2022). Vaginal lubricants, which are non-hormonal and used externally on the vulva, are widely recommended to make sexual touching more comfortable (of note, topical lubricants do not address vaginal pain) (Boa & Grénman, 2018; Carr, 2015; Coady & Kennedy, 2016). Psychological treatments. Even though treatments exist for physical symptoms of sexual dysfunction, many concerns with sexuality are psychogenic and therefore require evidence-based psychological treatments (Bodurka & Sun, 2006; Carr, 2015). In fact, providing gynecological cancer survivors with a psychoeducational intervention as brief as half a day of sexual health education, which included rehabilitation exercises and some cognitive-behavioural therapy, significantly improved survivors’ sexual functioning and distress associated with their sexual issues (Boa & Grénman, 2018). Perhaps the most compelling evidence to treat sexual difficulties and the subsequent psychological sequelae in gynecological cancer survivors originates from various studies by Brotto and colleagues, who have offered significant contributions to the forms 26 that therapy can take to treat this population. In one such study, a psychoeducational intervention offered elements of cognitive-behavioural therapy as well as mindfulness training and demonstrated improvements in sexual desire, arousal, satisfaction, distress, depression, and overall well-being in the participants (Brotto et al., 2008). In another study evaluating the effects of mindfulness-based therapy, Brotto et al. (2012) confirmed their earlier findings, showing that the treatment led to significant improvements in sexual response and decreased distress in the gynecological cancer survivors who participated compared to the waitlist controls. Finally, a literature review of several studies evaluating psychological interventions developed specifically for cancer patients with sexual problems through randomized control trials and non-controlled trials demonstrated that many approaches yielded varying, yet promising results nonetheless (Brotto et al., 2010). Thus, it becomes evident that a multidisciplinary approach is ideal in treating sexual difficulties in gynecological cancer survivors (Tracy et al., 2016). However, a focus on psychological treatments may be warranted given the elevated psychosocial burden associated with sexual dysfunction and the evidence for reduced distress which arises out of such an approach. 1.4.1 Burden of Care and Barriers to Accessing Psychological Interventions As reviewed earlier, the lack of readily available resources and treatments by cancer care providers to their patients places the burden of care for sexual health concerns on survivors. Hence, survivors must look for ways to manage their sexual difficulties and finding support through integrated sexual health clinics within cancer centres can be challenging due to their limited availability (Brotto et al., 2010; Tracy et al., 2016). In the case of psychological support, survivors must therefore search outside the cancer ecosystem for counselling and therapy options. Having such services available in person only also poses significant barriers for 27 survivors. Studies have outlined the financial and geographical burden of in-person therapy, with experts in sex therapy often costly and located in urban areas (Meana, 2008; Tracy et al., 2016). Additionally, there is a lack of experts in the field, which amplifies barriers to appropriate treatment. Along with these identified gaps in access to care, survivors of gynecological cancers have additional barriers with respect to physical and cognitive abilities that ought to be contemplated. Indeed, chemotherapy may leave survivors with extreme fatigue and brain fog in the long term, amongst other debilitating side effects, which render in-person therapy difficult (Lokich, 2019; Peterson, 2017; Tracy et al., 2016). As such, there is a need for novel methods of delivering evidence-based treatments that overcome these barriers. Digital health interventions may offer a potential solution. 1.5 Digital Health Tools for Cancer Survivors Digital health tools and telehealth medicine are methods of delivering healthcare virtually to patients. These services can be delivered through tailored applications or websites available on any platform: a smartphone, a tablet or a computer (Mohr et al., 2013). Digital health interventions have traditionally been created to provide one-on-one virtual care with a clinician, however, there have been an increasing number of self-paced programs developed to provide asynchronous care to patients (Borghouts et al., 2021). In the context of cancer, electronic health technologies have been implemented over two decades to provide essential supportive care to survivors, their families, and their caregivers (Darley et al., 2021; Doyle-Lindrud, 2020). Moreover, the COVID-19 pandemic undeniably contributed to the increased use of telemedicine and digital health interventions to treat patients in the last few years, and preliminary evidence suggests that such modern healthcare methods will remain in practice (Guitton, 2021; E. A. Mahar et al., 2022; Mann et al., 2020; Philippe et al., 2022). Further to this point, research has 28 shown that patients’ openness to telehealth has increased as a result of the pandemic and the necessary changes to healthcare delivery that ensued (Crouch et al., 2023). Given the significant barriers that gynecological cancer survivors face in accessing sexual health care, there is a potential role for digital health to fill this gap. The asynchronous nature of self-paced programs allows gynecological cancer survivors the flexibility of choosing when and where to undertake therapy, especially since they are often balancing the demands of ongoing medical appointments and other obligations (de Rooij et al., 2018; Doyle-Lindrud, 2020; Ellis et al., 2022). Despite the end of treatment, survivors may be required to attend follow-up and surveillance appointments periodically, and unlike traditional synchronous online therapy appointments with psychologists, a self-paced tool provides survivors with the ability to choose the optimal time for them to participate (A. C. Cox, 2016). Moreover, this provides them with the opportunity to adapt and adjust their participation while also considering their physical health needs and limitations which may fluctuate from day-to-day and over time (A. C. Cox, 2016; Sav et al., 2015). As previously noted, another consequence often cited for low access to sexual health care relates to stigma, shame, and embarrassment (Boa & Grénman, 2018; Lokich, 2019; Schaller et al., 2020). Hence, an individual program where face-to-face interactions are not required may reduce emotional barriers to accessing treatment. A recent study reviewed the barriers and facilitators associated with user engagement with digital mental health interventions and established that anonymity was an important facilitator in many cases as users often found self-guided tools less stigmatizing when they addressed ‘embarrassing’ topics (Borghouts et al., 2021). This evidence demonstrates the promising potential for the future implementation of digital sexual health tools for survivors. 1.5.1 eHealth Interventions to Treat Sexual Dysfunction 29 Developing research is currently underway to evaluate the feasibility and efficacy of digital interventions to treat sexual dysfunction in the general population and in gynecological cancer survivors. Specifically, a review of recent evidence concerning online and mobile psychotherapeutic treatments for female sexual dysfunction concluded that most studies that have been done on the matter have shown them to be effective in improving the sexual outcomes and functioning of participants post-treatment (Mahar et al., 2022). This not only supports the thesis that digital health tools can successfully treat sexual difficulties (and in some cases, as effectively as in-person therapy) but also that they may be used to lower the barrier to access care (Mahar et al., 2022). One recent digital health tool delivering evidence-based psychological treatments online is eSense, co-developed by researchers at the University of British Columbia and Xavier University. Across three studies, eSense has been found to be feasible and usable (Brotto et al., 2022; Stephenson et al., 2021; Zippan et al., 2020). One arm delivers cognitive-behavioural therapy and was first evaluated for its feasibility, its usability, and its preliminary efficacy which was then followed by a parallel process for the second arm providing mindfulness-based therapy. In both instances, the results were positive: participants were not only satisfied with the intervention, but it proved to be acceptable and potentially highly efficacious in treating sexual function and distress (Brotto et al., 2022; Stephenson et al., 2021). Following this preliminary evaluation of both arms of eSense, it underwent a randomized controlled trial which produced further positive outcomes: sexual desire and satisfaction were both significantly improved, while sexual distress was found to be significantly reduced, with no differences between the arms and positive effects maintained at 6-month follow-up (E. Mahar et al., 2025). Another study specifically looking at an online intervention for genital and pelvic pain and penetration issues during sex successfully improved participants’ sexual intercourse 30 frequency and genital and penetrative pain (Zarski et al., 2021). In addition, it was found that cognitions around the pain were significantly reduced. These results are especially promising, considering the prevalence of dyspareunia in gynecological cancer survivors. In line with the previous studies, preliminary evidence for the success of online tools in treating sexual distress and difficulties in survivors has also been outlined in the literature. Notably, a self-paced online psychoeducational program to treat sexual distress and functioning in survivors was adapted by Brotto and colleagues (Brotto et al., 2017) from an earlier intervention made to be delivered in person, and the results showed that gynecological cancer survivors experienced a significant decrease in sexual distress, while their sexual functioning and their mood improved, all of which was maintained at 6-month follow-up. The qualitative inquiry which followed this intervention yielded valuable information regarding the strong points and the particular gaps within the program which would have been valued by the participants. Certainly, the intervention provided survivors with the opportunity to reflect on their sexuality and relationships, especially after learning new information regarding sexual health after cancer. Further, they appreciated how the modules allowed them to reflect on intimacy within their relationship as they worked through the exercises, and reviewed earlier material as needed. Interestingly, their feedback for improvements included providing facilitated interactions to discuss the material rather than through a forum, allowing greater flexibility as to how to approach the material, and including information regarding other needs and psychological experiences they may have as survivors (Brotto et al., 2017). A randomized controlled trial of a 12-week virtual support group for survivors of gynecological cancer experiencing sexual distress (called Gyne Gals) showed more modest improvements in clinical outcomes (Classen et al., 2025). In fact, results for sexual distress, body image, relationship satisfaction, and social support 31 showed no significant difference with waitlist control participants while only small improvements were observed with sexual functioning which were not sustained at follow-up (Classen et al., 2025). Still, despite the small effects in this research, the trends were promising; sexual distress was lower at follow-up for the treatment group which indicates potential for improvement through similar approaches (Classen et al., 2025). Taken together, the data point towards the need for developing an online psychological intervention to treat survivors of gynecological cancers who experience sexual difficulties and distress. Given the limited research in this domain, this provided the rationale for the study outlined in the second chapter of this thesis, which aimed to adapt an existing and effective digital sexual health tool, eSense, to the needs of gynecological cancer survivors. In the next sections, I describe critical aspects of the research approach and methodology. 1.6 Patient Engagement in Research Patient partner engagement in research was derived from the involvement of various stakeholders in health research (Bird et al., 2020). This practice was historically employed to target and improve important areas of healthcare by implicating the various interested parties such as patients, clinicians, and caregivers (Government of Canada, 2014). In time, this patient-centred approach became a well-established field and gained momentum in research concerning patient outcomes, health systems and gaps in the delivery of care (Bird et al., 2020). Precisely, this collaborative endeavour has been defined by the Patient Engagement in Research Project team (2018) as the “planned, supported, and valued involvement of patients and their surrogates (e.g., parents of sick children) during the research process,” adding that “it involves an interactive team and positive research environment that not only facilitates patients’ effective contributions to help to produce important outcomes, but also ensures they benefit from the 32 experience” (Hamilton et al., 2018, p. 5). Indeed, a central tenet of the involvement of patients in research posits that the experience itself must be valuable, inclusive and beneficial for the partners themselves who contribute considerable knowledge given their unique position and perspective vis-à-vis the research objectives (Hamilton et al., 2018). Moreover, situating the level of patient engagement on the spectrum established in the literature (see Figure 1) is recommended (Smith-MacDonald et al., 2019). Ideally, to constitute genuine reciprocal participation, patients and researchers would locate their work at a minimum level of consultation according to the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research Framework (2017). Barring this, the literature cautions researchers of common transgressions which may transpire when conducting such research. In fact, an article written by patient partners to the research and academic community highlights some of these common mistakes that can occur but should be avoided in this type of collaborative work (Richards et al., 2023). These include (1) tokenism as opposed to meaningful collaboration, (2) negative bias towards lived experience as a form of expertise, (3) improper support and inclusion of patients as partners and (4) ignorance towards patient partners’ vulnerability (Richards et al., 2023). Hence, it becomes evident that patient involvement requires sensitivity to meaningfully reach positive outcomes for all parties involved. 33 Figure 1 Levels of patient and researcher engagement in health research from © Manafò, E., Petermann, L., Vandall-Walker, V., & Mason-Lai, P. (2018). Patient and public engagement in priority setting: A systematic rapid review of the literature. PLOS ONE, 13(3), page 5. By permission of the publisher. CC BY 4.0 Furthermore, an interesting feature underscored with regard to patient engagement in research is their perspective on their inclusion in such work. Certainly, it has been stated that patients appreciate being part of the process to positively impact healthcare research and are thankful for the opportunity to use their experience and enhance their peers’ eventual care (Pomey et al., 2015). Additionally, patient partners have also expressed an interest in participating in such roles as it offers them the chance to continuously learn about their health situation and the scientific evidence around it, as well as assess the care that is currently being delivered (Pomey et al., 2015). Examining the situation in the cancer and sexual well-being fields yields compelling attestation for patient engagement in research as survivors have previously been vocal about having their experience represented in the research. Indeed, in semi- 34 structured interviews with survivors concerning their thoughts on integrated sexual health care clinics within cancer centres, they desired more involvement of survivors as partners in the development of sexual health care and resources(Gorman et al., 2022). Consequently, it is no surprise to see cancer survivors as patient partners increasingly emerge in supportive care research and development. 1.7 Knowledge Translation for the Betterment of Survivorship Care Knowledge translation has broadly been described as the approach to move academic research evidence into clinical practice (Graham et al., 2018). The Canadian Institutes of Health Research describes it more precisely as the “dynamic and iterative process that includes synthesis, dissemination, exchange and ethically-sound application of knowledge to improve the health of Canadians, provide more effective health services and products and strengthen the healthcare system” (Government of Canada, 2005). This specific field evolved as a means to counteract the unfortunate reality wherein academic knowledge makes its way into practice slowly or sometimes not at all (Graham et al., 2006). Indeed, despite the multiplicity of evidence and recommendations for best practices that transpire through research efforts and inform implications for clinical care, it can take up to 17 years to be put into effect (Lane-Fall et al., 2019; Morris et al., 2011). Hence, knowledge translation, alternatively labelled ‘implementation science,’ has made headway to propel findings into standard practice “to improve the quality and effectiveness of health services and care” (Graham et al., 2006; Lane-Fall et al., 2019). There has been an increase in the use of knowledge translation tools or research-derived actionable tools (RDAT), such as toolkits, guidebooks, clinical protocols, and decision-making aids as objects to communicate findings and elicit action in a simple and straightforward manner (Hampshaw et al., 2018; Sharp et al., 2022). There is much to be uncovered regarding the 35 creation and dissemination of RDAT as this is an emerging field, but the literature suggests employing a systematic approach to such efforts in the hopes of effectively influencing its application (Barac et al., 2014; Sharp et al., 2022). Consequently, a comparative case study evaluated aspects of toolkit dissemination and concluded that establishing well-defined needs of the end-users may lead to greater implementation and that explicitly defining the factors around its application in practice will likely contribute to higher reach (Sharp et al., 2022). Fortunately, when used adequately and developed appropriately, the limited evidence available demonstrates that toolkits can have moderate to strong effects in producing change (Yamada et al., 2015). Regarding the development of toolkits, focus group discussions and interviews with healthcare professionals and community members emphasized the need for brief, practical, convenient and strategic material in a variety of formats (Davis et al., 2017; Jeyakumar et al., 2024). Moreover, the literature indicates incorporating versatile elements within toolkits such as checklists and worksheets to effect actual change in mindset and practice (Jeyakumar et al., 2024). Most indispensably, however, toolkits should explicitly state the evidence underlying their enclosed recommendations, consider the context in which they intend to be disseminated, and have their effectiveness evaluated to establish further evidence of their suitability in such contexts (Barac et al., 2014). The evidence for increased survivorship care is abundant (Aaronson et al., 2014; McCallum et al., 2012; Nekhlyudov et al., 2019). What is even more unambiguous is survivors’ need for increased knowledge among healthcare providers about their reality navigating the world post-cancer. Repeatedly, survivors’ experiences with sexual health concerns after cancer have been substantiated in quantitative and qualitative studies alike, and their demands for improved care have been established (Juraskova et al., 2003; Trivers et al., 2013). Given the 36 extensive delays between research outcomes and clinical care application, the use of knowledge translation in a pedagogical format suitable for clinicians may be warranted in order to precipitate actionable change and enhance the care offered to the growing gynecological cancer survivor population. 37 Thesis Aims and Objectives Given evidence for high rates of sexual concerns after gynecological cancer, and the lack of accessible and evidence-based treatments to address these concerns, there are three main objectives to this thesis research: 1) To deepen our understanding of sexual health concerns and their impact on gynecological cancer survivors in relation to the subject matter raised in eSense. 2) To use the information obtained in objective 1 to adapt an asynchronous online platform (eSense-Cancer) delivering cognitive-behavioural therapy and mindfulness-based therapy to treat sexual dysfunction in gynecological cancer survivors with the help of patient partners’ input and engagement. 3) To create a knowledge translation toolkit informing healthcare providers who want to create their own survivorship care material on how to tailor these resources to a gynecological cancer survivor population, as well as outlining the best practices to implement such tools in practice. 38 Chapter 2: “Oh! You’re having sex?”: Understanding the Experience of Ovarian Cancer Survivors to Inform the Adaptation of eSense-Cancer, a Digital Health Platform Treating Sexual Difficulties After Cancer Note: As Chapter 2 represents a “manuscript as thesis”, it has been formatted to the journal requirements for the Journal of Psychosocial Oncology. Manuscript details: Allaire-Stacey, G. R., Lacroix, A., Karov, R., Stephenson, K. R., Brotto, L. A. (Manuscript in preparation). “Oh! You’re Having Sex?”: Understanding the Experience of Ovarian Cancer Survivors to Inform the Adaptation of eSense-Cancer, a Digital Health Platform Treating Sexual Difficulties After Cancer. Journal of Psychosocial Oncology. 39 2.1 Abstract Background: While gynecological cancer incidence is rising, so is the period termed “survivorship” as treatments become more effective. One aspect of quality of life that is impacted by treatments for gynecological cancer is sexual function, including pain during intercourse, low desire and arousal, and psychological distress associated with sexual difficulties, and this is especially true for ovarian cancer survivors. Moreover, the lack of available resources to help treat survivors’ sexual difficulties, paired with physical, geographical, and financial barriers, often limit patients’ access to care. Aim: We aimed to understand the reality of sex after ovarian cancer in order to adapt eSense, an online platform offering cognitive-behavioural therapy (CBT) and mindfulness-based therapy (MBT) for sexual dysfunction, to survivors’ unique sexual difficulties. Methods: We collaborated with an advisory board comprised of patients with a history of ovarian cancer and lived experience of sexual dysfunction to inform the creation of eSense-Cancer. A total of 6 patient partners worked through the modules of eSense and provided their feedback regarding potential revisions through confidential surveys. We subsequently held focus group discussions to expand on survey responses and provide more nuance. Finally, we conducted a thematic analysis with the resulting data to inform changes to eSense to better reflect cancer survivors’ lived experiences with sexual difficulties. Results: Three themes – (1) understanding the biopsychosocial effects of cancer on the person, (2) the transitory stages of cancer, and (3) how sociocultural expectations and structures impact survivors – were generated to illustrate the lived experience of our patient partners and a subtheme – sex and intimacy after cancer – was formed at the intersection of all three themes to explain this unique experience. We then informed our understanding of the specific 40 recommendations our patient partners offered based on the themes above and generated an additional two themes – (4) acknowledging and integrating the cancer experience within eSense-Cancer and (5) addressing the accessibility needs of survivors using eSense-Cancer – to establish the priorities for the adaptation of eSense-Cancer. Finally, another intersecting subtheme was developed resulting from the overlap of these last two themes: fostering empowerment for cancer survivors who use eSense-Cancer. Implications: The experience of sexual difficulties amongst ovarian cancer survivors tends to be severe and widespread due to the aggressive nature of the disease and the number of treatments required. To varying degrees, survivors of other gynecological cancer types may experience similar outcomes and may also benefit from a digital sexual health tool. Therefore, once a revised program adapted for all gynecological cancer is complete, further research will assess the feasibility and usability of eSense-Cancer, which may provide maximally relevant and efficacious sex therapy for this unique population. 41 2.2 Introduction Advances in cancer treatments are increasingly extending the life expectancies of gynecological cancer survivors. However, these treatments often result in distressing post-treatment symptoms that adversely affect patients' quality of life (Boding et al., 2023; de Rooij et al., 2018). This is especially the case for ovarian cancer survivors who are often diagnosed at a more advanced stage of the disease due to the lack of identifiable symptoms early in the disease (Prat, 2014). Consequently, more aggressive surgical and medical treatments are necessary to treat these malignancies, and patients may be left with significant physical and quality of life related consequences (Chang et al., 2023). A critical aspect of patients’ quality of life impacted by gynecological cancer treatments is sexual dysfunction, which has been reported in up to 90% of the population with gynecological cancers (Chapman et al., 2019; Lokich, 2019). In fact, ovarian cancer survivors have been shown to experience significantly higher rates of sexual dysfunction and depression, lower rates of relationship satisfaction, and poor quality of life when compared to cancer-free individuals in population-based samples (Stewart et al., 2001). Interestingly, these impacts on sexual health and well-being are not specific to any particular type of ovarian cancer, but rather prevalent throughout subtypes, perhaps due to similar treatment methods (Stewart et al., 2001). Specifically, surgical interventions such as oophorectomy, vulvectomy and hysterectomy, often concurrent with radiation and chemotherapy, can cause physical, psychological, and abrupt hormonal changes, and can induce iatrogenic premature menopause. These physical and hormonal changes increase the likelihood of sexual difficulties, including vaginal atrophy and/or dryness, dyspareunia, body image issues, and lack of arousal and desire (Fischer et al., 2019; Roussin et al., 2023). Resulting sexual dysfunction often includes pain during intercourse, 42 chronic low desire and arousal, and sex-related distress arising from these various symptoms (Fischer et al., 2019; Roussin et al., 2023). Moreover, persistent stressors arise from and after the acute treatments, further limiting healthy sexual functioning and increasing psychological distress (Fischer et al., 2019; Roussin et al., 2023). Despite the high prevalence of diminished sexual function and subsequent reduced quality of life in gynecological cancer survivors, healthcare has not adequately addressed these concerns. Patients report barriers to accessing sexual health support due to stigma, social embarrassment or the uncertainty about how to address sexual health along with other concurrent challenges of cancer (Fischer et al., 2019). Additionally, patients who have communicated their sexual health concerns with their healthcare teams often encounter reluctance in the conversation, a lack of knowledge and sometimes surprise that women want to improve their sexual health post-acute intervention (Dai et al., 2020; Duimering et al., 2020; Roussin et al., 2023). Because the etiology of these sexual health concerns involves a combination of biological, psychological and social contributors (Zippan et al., 2020), there is evidence that psychological interventions, including cognitive behavioural therapy (CBT) and mindfulness-based therapy (MBT), can be quite effective for addressing psychosocial domains of sexual health (Nappi et al., 2016; Zippan et al., 2020). CBT includes modifying negative thought patterns, gradual exposure to anxiety-provoking situations, increasing engagement in pleasurable activities, enhancing communication skills, practicing sensate focus, exploring and destigmatizing sexual fantasies, and utilizing guided masturbation and pleasure-inducing techniques including incorporating vibrators and other sexual aids (Mestre-Bach et al., 2022; Zippan et al., 2020). MBT involves the practice of non-judgemental awareness of current sensations in the body and mind through a series of repeated mindfulness practices, often 43 delivered via audio guide (Mestre-Bach et al., 2022; Nappi et al., 2016; Stephenson & Kerth, 2017). Unfortunately, despite the fact that up to 90% of the population with gynecological cancers report sexual dysfunction (Chapman et al., 2019; Lokich, 2019), only a third receive some form of healthcare support (Stephenson & Kerth, 2017; Zippan et al., 2020) which remains insufficient to address the person’s experience of managing life with cancer and sexual dysfunction. As previously mentioned, survivors face additional barriers to appropriate interventions, including the stigma of discussing sexuality and the anxiety that arises from self-advocating in one-on-one conversations with healthcare professionals (Chapman et al., 2019; de Rooij et al., 2018; Fischer et al., 2019; Stead et al., 2001). Healthcare providers may also be concerned about crossing professional boundaries when discussing sexuality if sexual health is not their specialty (Stead et al., 2001). A lack of awareness about, or availability of, sex therapy professionals who are also adept in the biopsychosocial challenges of gynecological cancer is further exacerbated by the burden of financial and geographic demands to attend such specialists (Chapman et al., 2019; Fischer et al., 2019; Schweizer, 2020; Stead et al., 2001). To address these gaps in delivering effective and evidence-based treatment for sexual concerns to cancer survivors, research has explored the potential benefits of economical, private, and easily accessible digital tools to deliver these psychological interventions (Brotto et al., 2022; Stephenson et al., 2021). With the COVID-19 pandemic contributing to the increased use of digital health interventions as a means to circumvent quarantine orders, preliminary evidence demonstrates that modern healthcare methods such as telemedicine and digital interventions will remain in use (Guitton, 2021; E. A. Mahar et al., 2022; Mann et al., 2020; Philippe et al., 2022). 44 This recent evidence thus demonstrates the promising potential for the future effective implementation of digital health tools. As an example of a successful digital sexual health tool, eSense is an online platform that delivers two arms of treatment: mindfulness-based therapy (MBT) and cognitive-behavioural therapy (CBT) for sexual dysfunction in women. This 8-module program includes interactive videos, instructional videos and audio files, patient cases, and downloadable homework exercises, allowing the participants to set the pace of their progress through the modules. Multiple studies in women with sexual interest and arousal disorder (SIAD) have demonstrated that eSense facilitates significant improvements in sexual desire, arousal, satisfaction, distress, depression, and overall well-being in the participants (Brotto et al., 2022; Stephenson et al., 2021). Most recently, in its randomized trial, eSense was found to significantly improve sexual desire, reduce distress, and improve sexual satisfaction in non-cancer survivors with sexual dysfunction (Mahar et al. 2025). Therefore, we sought to investigate the sexual health and other psychosocial benefits that eSense could offer to people living with sexual dysfunction following ovarian cancer in light of this evidence regarding its efficacy. As a first stage of evaluating eSense to ensure it meets the needs of ovarian cancer survivors, we established two objectives. First, we sought to (1) undertake a qualitative investigation to explore the sexual health experiences and needs of ovarian cancer survivors in relation to eSense and the subjects explored within the modules. Then, we aimed (2) to identify how eSense should be adapted to meet the needs and experiences of survivors based on the themes that emerged from our first objective. 2.3 Methods 2.3.1 Patient Partners 45 We established our advisory board using convenience sampling from Ovarian Cancer Canada, an online support group for those living with and after cancer. Eligibility criteria were ≥ 19 years of age, gynecological cancer survivor, fluent in English, and comfortable using computers and digital platforms with access to the Internet. Following a presentation at Ovarian Cancer Canada’s monthly gathering, significant interest was shown from the survivors in attendance. Thus, we enlisted a total of six patient partners who reported sexual difficulties stemming from their cancer treatment to form our advisory board. 2.3.2 Procedure We collaborated with a patient advisory board to interact with the eSense platform and subsequently inform the creation of eSense-Cancer. To safeguard the identities of these six ovarian cancer partners, we did not collect additional information regarding their diagnosis (e.g., grade and stage), age, or location. To maintain anonymity, the patient partners have been assigned fictional names for referencing purposes. Following recruitment and intake, six patient partners were originally enrolled. However, due to unforeseeable circumstances, one patient partner withdrew after their review of 1 module and their attendance at initial meetings (introductory meeting and CBT focus group 1). They were still compensated for their efforts in the early stages of the review and their input was included in our subsequent analysis. To ensure an equal number of patient partners reviewed both the CBT and MBT arms, and to obtain a comparison of both arms with regard to their adaptation, patient partner Gillian volunteered to revise the entirety of both eSense arms. Hence, she was provided access to all modules and was compensated appropriately for her additional feedback and efforts. Each therapeutic approach was divided into 9 sections, an introduction section followed by 8 modules to be reviewed. 46 Within each section, there were guided tabs that highlighted the topics, activities, and lessons used to highlight and treat sexual problems. The patient partners were instructed to go through all the modules within their assigned CBT or MBT arms, immersing themselves in the content and format. The online data capture program Qualtrics was used to administer questionnaires after each module to capture the impressions, insights, and feedback that patient partners had on that specific section. A sample of the Qualtrics survey questions for CBT was the following: In the tab “expectation for your participation”, would you add any details concerning one’s experience as an ovarian cancer fighter/survivor? For MBT, a sample question was: Do you think any review points related to sexual difficulties after cancer should be included in the section “Review of module 1 concepts”? Next, the lead researcher went through all responses within the Qualtrics surveys, compiling them into a master document. This master document was used to formulate open-ended questions for the subsequent focus groups (see Table 1). The focus group interviews were conducted using Zoom, a widely used video conferencing tool, to facilitate rich in-depth discussions after patient partners completed the review of all their assigned modules within the eSense program. There was a total of three focus groups: two for the CBT arm and one for the MBT arm. While the program content for the CBT and MBT arms are the same, the aggregated responses from the CBT survey generated more responses which necessitated an additional focus group session, to cover all the generated material, while the MBT group required only one session. All three focus-group sessions were facilitated by the lead author with guidance from co-author Dr. Brotto who has extensive experience with this type of approach. Each session lasted two hours. Before the interviews, and at the discretion of the patient partners, they were encouraged to use an alias and turn off their cameras to maintain their anonymity. With the consent of the patient partners, all focus group 47 sessions were recorded and transcribed into text, using Zoom’s audio transcription function, which automatically generates a rough transcript of the audio-video recordings. To enhance the accuracy of the transcripts, an external researcher was brought on to review, edit, and synchronize the automatically generated text. The researcher adjusted the transcripts to ensure they were verbatim and captured all verbal nuances. These transcribed documents were converted to Microsoft Word documents to be used for the thematic analysis. The themes generated through this analysis were then used to adapt specific areas of eSense to create eSense-Cancer. Following the recommendation of the Research Ethics Board (REB), the advisory group’s input is providing expert advice rather than participating in experimental procedures. Therefore, the ethical review and formal consent processes that are usually mandatory for protecting research participants do not apply to this study. Lastly, patient partners were compensated $40 per hour for their work and spent a total of 25 to 30 hours going through eSense, providing their feedback, and participating in the focus group sessions. Funding for this project was from a Planning and Dissemination Grant from the Canadian Institutes of Health Research awarded to the senior author. 2.3.3 Focus Group Sessions: Discussion Questions Table 1 Discussion Questions for the Review of the CBT Arm Cognitive-Behavioural Therapy (CBT) 1. What other benefits could eSense-Cancer provide to patients beyond helping with sexual difficulties? Stress or sleep were mentioned; what improvements could be made in other facets of its application? 2. How can we shift from using negative medical terminology to a more positive framework in our discussions, and what alternative words could we use to better support psychological well-being in the context of the eSense-Cancer program? 3. What specific tools or explanations would be helpful to demonstrate how ovarian cancer is integrated into the eSense-Cancer program, particularly in its focus on ovarian/gynecological cancer? 48 Cognitive-Behavioural Therapy (CBT) 4. How can we address the concerns about font contrast in the modules, especially considering the potential vision side effects from chemotherapy experienced by cancer survivors? 5. Should the eSense program adapt its expected timeline to accommodate the unpredictable demands and side effects of cancer treatments, and how should this flexibility be communicated to participants? 6. What are some inclusive and gender-neutral terms we can use in eSense-Cancer to refer to individuals with gynecological cancer, considering that not everyone identifies as a woman but may still have female sexual organs? 7. What alternative terms to “survivor” could be used to acknowledge participant experience and resilience? 8. What specific details or demographics could be incorporated to illustrate how cancer may impact one’s sex life? 9. What psychological or physical aspects related to scarring have impacted your sex life or the sex lives of those you know? 10. Should we include a younger case, and someone diagnosed later in life in eSense-Cancer, considering the different familial contexts they may have? 11. Should we include information in the eSense-Cancer intervention about how cancer treatments like chemotherapy and surgery can contribute to sexual difficulties such as vaginal dryness and decreased libido? 12. Should we provide an option for participants to explain why they do not believe cancer is relevant to the cause of their sexual problems, allowing for more comprehensive feedback in the survey? 13. Should we distinguish between sexual difficulties caused by menopause and those caused by chemotherapy, radiation, and other cancer treatments? 14. During our discussion on vocabulary, we identified “complaint,” “behaving,” and “faking it” as problematic terms. Were there any other words or expressions you noticed throughout the modules that could also benefit from modification? Additionally, would you like to address any concerns specifically related to the three terms mentioned? 15. Would you like to brainstorm alternative words or phrases that convey similar meanings without causing distress? 16. How did you come to accept your body post-cancer, and what insights can you share about that transition for individuals with ovarian cancer? 17. Could you discuss the anxieties that have surfaced because of cancer and its treatments? Are these anxieties more intrapersonal, directed towards yourself, or interpersonal, involving relationships with others? 18. How can we incorporate the fear of partners gaining sexual pleasure through other means into eSense? Do you have any suggestions or insights on addressing this concern within the program? 19. Are cancer fears equivalent to the anxieties we’ve discussed, or are they distinct? Do cancer fears primarily relate to the disease itself, or do they encompass broader concerns surrounding cancer and its impact? 49 Cognitive-Behavioural Therapy (CBT) 20. Could you please elaborate on the potential reasons behind feelings of sadness while looking at one’s genitals after cancer treatment? Is it primarily related to physical changes resulting from surgery, or are there psychological factors at play as well? 21. Apart from sadness, are there any other emotions commonly experienced by individuals affected by cancer that should be acknowledged in eSense-Cancer? 22. Would you like to see eSense-Cancer reaffirm how strong someone is throughout, in a holistic way? 23. How do fears and anxieties related to cancer treatment translate into physical difficulties with sex? Specifically, are there psychological variables that impact physical abilities, such as fear or anxiety affecting one’s physical capacity for intimacy? 24. How can we accurately depict the experiences of individuals without partners in the eSense-Cancer intervention, including their potential exploration of solo sexual activity, and considering whether this may entail less pressure or guilt compared to partnered intimacy? 25. Could we assess whether partners of individuals taking eSense-Cancer cooperated in the program, and if not, explore the reasons why? 26. Could you remind me of some side effects specific to chemotherapy and radiation that can affect sexual functioning? Additionally, could you provide examples of how these treatments may impact sexual functioning, both during treatment and as long-term effects afterward, to ensure they are appropriately addressed throughout eSense-Cancer? 27. Would you prefer to see discussions about how the body can change after cancer treatment added into eSense-Cancer, or would you rather have increased communication about these changes with specialists like oncologists? 28. Do you regularly see other specialists who monitor your health post-treatment, such as general practitioners, who could benefit from this information? 29. Could we offer information about a multidisciplinary team of professionals who can provide support for various aspects of post-cancer care at the end of eSense-Cancer, if assistance is still needed? 30. In summary, what are your overall impressions of eSense-Cancer and the Cognitive Behavioural Therapy (CBT) arm? Table 2 Discussion Questions for the Review of the MBT arm Mindfulness-Based Therapy 1. What kind of language should be used within eSense-Cancer to properly acknowledge the experience of ovarian/gynecological cancer and its effects on your life and sense of self? 2. Many of you commented that adapting eSense to eSense-Cancer requires less judgemental, patient-oriented language. What is patient-oriented language? 3. Do you think the terms and titles within the modules could be made even more user-friendly? 4. To structure the videos and reading materials to offer maximum accessibility, should there be an option for both in every section? 50 Mindfulness-Based Therapy 5. Given that you have stated that any kind of cancer diagnosis, including terminal, may cause sexual dysfunction, we would like to understand your lived experience with sexual activity throughout the diagnosis and treatment. How did/does the cancer diagnosis affect your sexual relationship(s)? 6. What kind of adaptations can eSense-Cancer include to support someone working through the therapy on their own? 7. Considering the variety of individual’s needs as one moves through the timeline of diagnosis, treatment, and recovery, is there an optimal point on that timeline when eSense-Cancer would be most helpful for healing success? 8. Given that everyone has a different experience going through the modules, depending on their symptomology and life situation, do you think we should adapt the modules to be completed within a variable timeframe? For example, if the least amount of time to complete the modules properly is 8 weeks, is offering 8-12 weeks sufficient to support an ovarian/gynecological cancer population? 9. Many of you have identified the emotions, anxieties and fears that come with cancer and the challenges they pose to working through eSense. You have listed guilt, dread, shock, exhaustion, futility, anger, blame, disbelief, and apprehension that came up more explicitly on the MBT arm than the CBT arm. You have also identified that you feel like your body has let you down and can no longer trust it. How can we incorporate all this awareness into the MBT arm of eSense-Cancer, and throughout each module? 10. Given the experience of symptomatic pain that can heavily impact the MBT eSense intervention, and vice versa, what adaptations can we make to the MBT arm to acknowledge the pain without exacerbating the psychosomatic pain? 11. Should we keep only the CBT arm and exclude the MBT arm if it is too distracting from the focus of sexual dysfunction? 2.3.4 Data Analysis We opted to conduct a reflexive thematic analysis of our qualitative data following Braun and Clarke’s (2006) methodology for the flexibility it offered in examining our research questions. The NVivo software was used throughout the data analysis process by the team of coders. The source of qualitative data was the transcripts from the focus groups in addition to the free responses from the online surveys. Through a collaborative process, the documents were divided to be reviewed by the three researchers, all of whom have experience and training in qualitative research. The lead researcher coded the CBT, MBT, and survey responses; the second researcher coded the MBT and survey responses; and the third researcher coded the CBT sessions. In line with Braun and Clarke (2006), an inductive approach was employed for code 51 identification, allowing themes to be generated directly from the data without preconceived categories or engagement with external literature. This method facilitated a comprehensive exploration of patient partners’ insights and recommendations, ensuring that the analysis remained closely grounded in the data alone. Themes were identified at the semantic level, focusing on the explicit meaning of the text rather than interpreting underlying or latent meanings and an experiential analysis was used to evaluate patient partners’ insights. Finally, our analysis was grounded in the critical realist paradigm as it aimed to understand the ways in which the lived realities of gynecological cancer survivors are situated within the broader social context and overarching social structures (Lawani, 2021). Indeed, we adhered to this paradigm to profoundly understand gynecological cancer survivors’ experiences with sex after cancer as they navigate their new reality. This also informed our understanding of the necessary adaptations for eSense-Cancer. First, each researcher began by thoroughly reading through their assigned data sets to become familiar with the content, immersing themselves in the data through multiple readings. Next, we independently generated initial codes, identifying significant features and labelling them directly from the data without being influenced by existing theories or frameworks. After this initial coding phase, all three researchers came together to compare our initial codes, discussing similarities and differences to reach a consensus on new codes. These new codes, along with their definitions, were then compiled into a codebook. Following agreement, each researcher returned to the data with the newly established codebook and re-coded their respective transcripts. Once re-coding was complete, the researchers collectively triangulated the coded data to identify broader categories—clusters of related codes that captured significant aspects of the data. Through further discussion and analysis, distinct themes emerged from these categories, 52 providing a deeper understanding of the underlying patterns and meanings (see Appendix A). The identified themes were then reviewed and refined to ensure they accurately represented the data. Finally, the themes were defined and named, offering a clear and concise representation of the findings, and used to inform the format and content of eSense-Cancer. Throughout the analysis, we adhered to Braun and Clarke’s guidelines to maintain rigour and credibility (Braun & Clarke, 2006). 2.4 Results 2.4.1 Research Question 1: What were gynecological cancer survivors’ experiences with cancer and sexuality? In order to grasp our patient partners’ recommendations for the adaptation of a digital sexual health intervention, it was imperative to first understand and acknowledge the complex processes that comprise ovarian cancer survivors’ phenomenological experiences as cancer survivors, especially within the context of the subjects raised in eSense. Thus, it is on this basis that we present the resulting themes in two parts, starting with a map of ovarian cancer survivors’ experience with cancer and sexuality and following with their recommendations for the adaptation of eSense-Cancer. We found three overarching themes: (1) the biopsychosocial effects of cancer on the person, (2) the stages of cancer, and (3) sociocultural expectations and structures. These themes overlapped with one another and generated a subtheme, where sexuality after cancer can be better understood. Indeed, trying to understand the experience of cancer survivors with sexuality and any resulting sexual dysfunctions following treatment was challenging because although survivors’ sexual health is deeply impacted by cancer, so is every other aspect of their lives. Hence, it became apparent that sexuality was weaved through the discussion with the patient 53 partners due to the nature of our inquiry, but the main themes that emerged from their lived experience as survivors went beyond any specific sexual concern. Therefore, it was beneficial to create a visualization of our themes to explain how sex and cancer were experienced by survivors (see Figure 2). Additional illustrative quotes are presented in Table 3. Figure 2 Research Question 1’s three key themes and the subtheme located at their intersection Theme 1: Understanding the biopsychosocial effects of cancer on the person The first theme that emerged from the data captures the direct effects of cancer diagnosis and treatments on survivors. Indeed, cancer affects multiple dimensions of people’s lives and leaves them to manage many physical, psychological/cognitive, and social/interpersonal ramifications brought on by the disease and its treatment, all of which were discussed at length by the patient partners: 54 Most women following surgery and [other] treatment modalities will experience a ‘lifetime’ of physical conditions. They may be relatively easy to deal with although most women I know never experience only mild chronic conditions. Most of us deal with severe and often limiting physical conditions ranging from bowel issues, insomnia, depression, cardiac problems from chemotherapy treatment to feeding tubes, ileostomies, etc. (Therese) The topic of pain and neuropathy following surgeries, chemotherapy appointments and radiation sessions was raised repeatedly by the survivors in the group. Despite the varying degrees of pain felt from one person to another, the consensus remained: the physical pain experienced after cancer is all-encompassing and is extremely disruptive to one’s daily activities. For our patient partner Gillian, she “can’t tolerate the sheets [hardly] touching [her]” as a result of the pain which means that “[she doesn’t] sleep well.” This pain experience can also be chronic, wherein no treatments or medication can resolve this issue, which translates to many psychological sequelae: You feel like an outcast because– you know, […] you lose hope. That's a very difficult thing; it makes factors a little bit worse. […] The fact that no one, no one can find medicine that helps me, makes me feel so isolated. It’s driving me crazy. And that’s a horrible feeling mentally. That’s causing more damage psychologically than other things. (Gillian) In keeping with this account, the side effects of treatment also lead to various psychological, emotional, and cognitive consequences for our patient partners. Most notably, chemotherapy-induced brain fog or “chemo brain” as coined by the group. Gillian expressed having difficulty focusing or expressing herself, leading her to feel “frustrated all the time” since she “[could not] function at the level [she] did before [cancer].” 55 Furthermore, the notion of psychological pain was put forward repeatedly by the patient partners who reiterated that cancer shifts your whole world upside down. The constant worry and stress described by the patient partners resulted in fear-driven thoughts like “Will I live another year?” (Therese) or “When is [cancer] going to be back?” (Edith), keeping them awake at night and leaving them exhausted during the day. This anxiety associated with cancer began the moment that one is diagnosed and tended to stay with them well after treatments ended. This was reflected in our patient partners’ stories: It’s very difficult to think about anything other than the diagnosis. What I mean is that while I still walk the dog, shop for groceries, cook meals, look after my house, etc., cancer rarely leaves my mind. And it’s exhausting. It’s also exhausting to try and find something else to think about because I can’t. Distractions are good but they are only distractions and before I know it, cancer is back at the front of my brain. (Therese) Besides the physical and mental impact cancer has on the person, our partners discussed the effects it has on their social lives and interpersonal relationships. As one participant noted on the impact of brain fog, and the resulting difficulties with communication: “From a partnership standpoint, people get frustrated […] they want the old [Gillian] back.” (Gillian) Some of our patient partners also discussed the impacts of these side effects and the diagnosis itself on romantic relationships. Although this was not the case for all patient partners (such as those with extremely supportive partners), others discussed the inability to sustain a fulfilling partnership due to the breakdown of intimate relationships because of their specific care needs. They described this as leading to conflicts and resentment between partners who ultimately both had physical, emotional and sexual needs that could not be met. Lastly, feelings 56 of abandonment between partners may also arise in such circumstances and the loss of the intimate aspect of the relationship in favour of a more platonic cohabitating one is possible. This experience, in addition to the notion of having to navigate partnered to solo sexual experiences after cancer as a result of such breakdowns was raised: My husband was not emotionally supportive, and I felt abandoned after being diagnosed. We fought often, and now we barely speak to one another. There are many long-standing feelings of anger, hurt, and abandonment on my part. The anger and resentment I feel [have] caused a complete shift in our relationship; we no longer are intimate. I still consider myself interested in sexual activity and use other means [like] vibrators to somewhat satisfy my needs, but it’s not the same as being with a partner. (Edith) Theme 2: The transitory stages of cancer The second main theme that arose related to the stages of cancer and the transition that occurs from life pre-cancer to post-cancer diagnosis. Our patient partners frequently mentioned the complete shifts in their priorities at various time points in the cancer journey, including with regard to sexual health: The period between the original diagnosis and treatment and potential recurrence is often very short. All that to say, many women would likely not prioritize their sexuality and sensuality over the fears of death, recurrence, leaving behind their family and friends, etc. (Therese) At diagnosis, when everything is new and confusing, one may experience changes such as a sudden large number of medical appointments, including quickly approaching surgery dates which can be frightening, anxiety about the future and the outcomes of treatment, and grief over 57 their old life. Then, during recurring treatments such as chemotherapy and radiation, one is often too focused on the direct adverse effects to think about anything else but their immediate well-being amidst symptoms (such as nausea, extreme fatigue, changes in bowel movement due to digestion issues, etc.), leaving any thoughts regarding other aspects of their lives on pause for the time being. Finally, when one is declared cancer-free and in remission some acute consequences of treatments may fade, but others remain present indefinitely, including anxiety and fears regarding recurrences. Unfortunately, a particularly difficult challenge for survivors at this point of the journey relates to navigating life and the aftereffects of cancer all on their own, as reflected by one partner: The period of post-treatment survival can be some of the most difficult times for cancer patients, because now all the ‘real action’ is done with, and the patient is more or less on her own in terms of guiding her care needs. This can be a depressing time of feeling damaged: ‘This is what I am now, I’ll never be the same or as good or as whole as I once was.’ (Dianne) Our patient partners highlighted the fact that this journey is “not a straight line” (Therese). Setbacks, such as recurrences and scares, are bound to happen along the way, which can bring back many of the challenges experienced earlier in the process. Nonetheless, a key component highlighted by the patient partners was the post-traumatic growth that many survivors eventually experience despite the challenging cancer journey. Put simply, after living with and beyond the disease, survivors can – in time – transition towards a certain acceptance of the situation they find themselves in. This often involves reframing their outlook, establishing realistic expectations of life beyond cancer and finding a renewed sense of pride in themselves for all they have been through. 58 Time is an important healer, and the longer the period between diagnosis/treatment and survival, the more I can place trust in my body. I live with cancer but I’m able to compartmentalize cancer most of the time. That’s not to say I don’t think about cancer every day, but it no longer consumes me full-time. (Therese) One additional aspect of transitions due to cancer that was echoed by all patient partners involved the clear shift in priorities which occurs in survivors from the moment they learn of their diagnosis. This rearrangement of priorities constituted a significant portion of the changes that were experienced by survivors who felt that the immediacy of the diagnosis and the thoughts regarding whether or not they would survive took priority over any other mundane concerns that were present before. We often change so much after dealing with cancer, and sometimes our old thought patterns are completely shifted when faced with [a] life-threatening illness. (Edith) Theme 3: How sociocultural expectations and structures impact survivors The third theme that emerged concerns the societal and cultural norms, expectations, and structures which uphold systemic processes in place and frame one’s experience of cancer. One such example relates to the pathologization of every facet of survivors’ experience from the moment of diagnosis onward by those managing their care. One patient partner’s opinion exemplified this: 59 I find the […] word problem to be offensive. Almost shaming. I have a problem, let’s turn it into an opportunity. So often as survivors, we hear unintentionally negative language from the medical community. You have bad veins. Your port failed. You are resistant to therapy, etc. (Linda) Furthermore, our patient partners also discussed the additional shame occasioned by societal messages due to the location of their cancer: Gynecological cancer survivors in our culture feel a lot of unconscious shame simply because our cancer involves sexual organs, and we need to be particularly mindful of this unintentional shaming. (Linda) Our patient partners also shared their frustration regarding the scarcity of conversations about sexual repercussions after treatment with their healthcare team. One participant shared a poignant anecdote on this topic: About a year ago, after a rather exciting afternoon, I started to have vaginal bleeding. […] I contacted the nurse practitioner on the oncologist healthcare team and […] she was very reassuring [but] the comment that stuck with me was: “Oh! You’re having sex?” […] And I– it just blew me away because I thought honestly, you work with women all day long. Has this never ever come up in any of your clinical meetings with your team? I was shocked. […] I don’t think that the medical community does a good job of discussing [sexual health]. (Therese) Lastly, a common pressure to care for their loved ones based on heteronormative expectations of women as caretakers of the home, despite the challenges caused by cancer was 60 voiced by our patient partners. This inflicted additional guilt and worry tied to women’s sense of obligation towards others as they navigated the cancer journey as described by one partner: And as women, there’s an element of guilt. Are we continuing to take care of our families? Friends? Partners? Are we satisfying them sexually when we’re at our lowest ebb? How do we address this guilt? Thinking of someone else and satisfying someone else (other than ourselves) is difficult at best and impossible at times. (Therese) Thematic Intersection 1: Sex and intimacy after cancer It is the intersection of these three themes – understanding of the side effects of cancer treatment, the transitions happening through the cancer journey, and the sociocultural norms and expectations placed on survivors – where the impacts of cancer on sexual health reside. For example, our patient partners discussed interest in sex as fluctuating based on the transitory stages in which they found themselves. Indeed, the shift in priorities and perspective that occurs at various time points in the journey has significant impacts on the importance that survivors assign to sex in their day-to-day lives, and this is further complicated by the physical and psychological effects of treatment as one may not feel well enough to even contemplate sex: Sexuality played a minor role at different periods of my cancer journey. When I was feeling well, had had a reasonably good (i.e., reassuring) check-up, was declared “stable,” etc. my entire outlook changed. However, while waiting for results (and the expectation was that these results were poor), sexuality was the furthest thing from my mind. (Therese) 61 Physical symptoms like genital pain and overall body aches certainly hindered any willingness to engage in sex, but what came through in the patient partners’ stories were also the psychological barriers which impeded any sexual interest: Sexual function deteriorated following diagnosis, surgery, and radiation due to lack of energy and interest, fear, pain of intercourse (dryness), [and] embarrassment over changes to body and body image. (Therese) Specifically, cancer thoughts and fears, dread, distrust in one’s body (i.e., feeling as if the body or the vagina can no longer do what it’s supposed to do such as orgasm, lubricate itself, feel pleasure, etc.), self-judgement, and self-esteem issues (i.e., embarrassment and insecurities) are amongst the key obstacles experienced by our patient partners, leading to avoidance of sex. Our patient partners explained: Dealing with a cancer diagnosis leaves many of us “distrustful” of our bodies. Our bodies have let us down. Enjoyment, relaxation, and happiness have been replaced with fear, apprehension, anger… (Therese) Since having a hysterectomy, […] my body produces very little lubrication. Partners have been understanding but when it’s taking me so long to orgasm, I begin feeling insecure, embarrassed and like a failure; not only to myself but to my partner. I feel the need to “fake” which in turn embarrasses me even more and makes me dread the next time sex is to take place. (Lily) In the case of fears related to making cancer worse, or causing it to come back through sexual intercourse, patient partners shared a belief that irritation or inflammation caused by sex 62 could lead to a recurrence, deterring them from engaging in sexual activity with a partner. Furthermore, some discussed the possibility of sexually transmitted infections worsening cancer or outright transmitting cancer to a partner. As illustrated by one participant: The anxiety now is certainly “When is it going to be back?” And what behaviours do I do that might contribute to that coming back sooner? So, […] I often worry. Does intimacy? Does sexual contact? Does that cause inflammation? Could that maybe precipitate a recurrence faster? (Edith) Patient partners also shared feelings of shame and embarrassment directed towards their body image after cancer which also negatively impacted their sexual desire: When you throw something like cancer into that, and then now my body’s changed, and I have this giant scar down my midsection, and I’ve gained so much weight, and I don’t have hair anymore. And then when my hair starts growing back, I’m still looking in the mirror and I’m not seeing who I am, so I have no desire to have sex when my partner’s looking at me. Why are you staring at me? Like I know that I don’t look good right now. Stop staring at me. Don’t look at me. (Lily) The avoidance experienced by the patient partners resulted in additional feelings of guilt regarding their sense of failure of their body and unmet perceived duty as partners: Then you’re just continuously shutting down sex, right? And then there comes the guilt, because then I’m guilty that I can’t do that, that I can’t please my partner, that I can’t please myself… Something that I should be able to do. […] What if I’m not able to, you know, reach an orgasm at that time? You know, so… I do still feel the guilt, though, like, why isn’t my body doing what it’s supposed to be 63 doing? Technically, I have everything that it should be able to do, and I have been able to, prior to what’s going on now, right? (Lily) Our patient partners also presented a more optimistic outlook and expressed that in time, and with a new outlook on life, many experienced a newfound peace and acceptance, leading to greater satisfaction with themselves and their sex life: As time progressed and I trusted my health situation a bit more, I was able to “detach” my cancer experience from my sexual experiences. But this took time, trust and a period of stability (health-wise). (Linda) As part of this growth, the patient partners stressed a need to reframe what constitutes sex and suggested a shift towards intimacy. They described their sexual function as being completely changed after cancer and feeling like it required years to adjust to it. Hence, some felt that it may be beneficial to rethink what is considered intimate in the relationship, and focus on intimacy – such as different kinds of gentle touches, cuddles and affection – as an alternative to sex while they manage the complexities of cancer: Sex can include many of the experiences typically thought of as foreplay and […] they don't have to lead to vaginal intercourse. For example, last night my husband left my ankle in the palm of his hand while we were reading in bed. No “sex” occurred, but this act was intimate enough for us at the time. This point may need to be highlighted, particularly for women going through ovarian or gynecological cancers, for whom vaginal intercourse would become a source of stress, anxiety, pain, and self-doubt at a time when she is already on high alert for all those things. (Dianne) 64 Our patient partners also emphasized the need for communication between partners to clarify and redefine what kind of touch feels good and what love and affection can look like after cancer, as illustrated by one patient partner’s reflections: How can I best communicate to my partner that rather than a sexual experience I want to be held, comforted, and heard? What is my partner’s expectation for sex? How can I tell my partner that I want to be “close” to him/her without having intercourse? (Lily) She then followed up with a personal anecdote on the matter of intimacy and touch and the power that it can have in maintaining connections amid hardship: It took years before I found a therapist who said, just touch each other. Just cuddle. Just– you know you're 35. You think that sex is all about orgasm; you know you talk about performance. But let’s get back to: “This is really freaking scary.” When you’re both feeling traumatized, just touch each other, and remember what that feels like, and that is super powerful. (Lily) 65 Table 3 Additional Illustrative Quotes from Patient Partners Themes and their Intersections (Subthemes) Illustrative Quotes Theme 1: Understanding the biopsychosocial effects of cancer on the person The short-term side effects of the radiation are severe (extreme loss of weight, uncontrollable diarrhea, no protection for [the] vagina offered during radiation). Long-term side effects include bowel obstruction, changes in bowel habits (diarrhea and/or constipation), food issues (inability to digest certain foods/nuts, seeds, etc.) and vaginal dryness (lack of lubrication, etc.). These are simply the physical side effects. There are also emotional and psychological issues. (Therese) As one lies in bed counting the seconds, minutes, [and] hours awake and worrying about how tired one will be the next day, the brain seems to go into overdrive. Counting sheep doesn’t help. (Therese) I’m a member of a support group […] and back when we used to meet in person […] one of our evening topics was ‘Why did we get cancer?’ And it was remarkable; when we went around the room, everybody – all women – described either a trauma or you know– it was like divorce, financial difficulty, infertility, looking after parents, the loss of the spouse… Everybody, without exception, blamed their– or felt that they could blame their physical diagnosis on a trauma […] It’s not hard to blame. You know, play the bit. Blame game. (Therese) It seems to be a very common occurrence; that in a partnered relationship, whether married or just dating, that either the person is incredibly supportive, and always there, always attentive, and they become your caretaker. Or the opposite: the person can’t handle it, they become distant [and] incredibly unsupportive, and it leads to a lot of relationship breakdowns. It seems to be [that] there’s less middle ground. It’s either the partner is fabulous, or the partner is just a complete whatever. I find that very common with women. (Edith) The relationship [between] my husband and me just took a complete nosedive when I got sick because he just couldn’t be there, in any respect. So, he has thrown himself into work. And so really, now we’re kind of like 2 ships passing in the wind. We don’t have a [intimate] relationship anymore. (Edith) Theme 2: The transitory stages of cancer It’s so different with every person, in whatever stage they’re at in there, you know. Are they 10 years out, or are they 6 months in, you know? (Lily) One’s life becomes a calendar of appointments, follow-ups, scans, bloodwork, etc. (Therese) Refusing to take on cancer treatment due to fear of risks, therefore fails to see any of the benefits. The fear of recurrence overwhelms (Gillian) It’s OK to grieve your old self. I haven’t done that. So, I’m just starting to grieve that person I used to be. I really miss the old [Gillian]. I want to go back and be her. (Gillian) It’s taken me years to get to the point where I’m completely comfortable that this is the way it is now, and I no longer grieve the way that it was. (Linda) Certainly, at the initial onset of a diagnosis, especially one as serious and life-altering as ovarian cancer, we are only concerned with the immediacy of the diagnosis, and “what to expect.” Moreso because we worry about the outcome and how this will affect our families and our friends. (Therese) 66 Themes and their Intersections (Subthemes) Illustrative Quotes Negative feelings do fade but it takes a long time and for many, those feelings are very close to the surface. (Therese) I really felt good once I finished treatment. I thought I was going to be the advocate now, and that I was, although I still worried. I– I really worried a lot less. Then that all went out the window when I had a recurrence. (Edith) It’s better now that I’ve accepted the fact that I’m on borrowed time. I’ve accepted the fact that I am very lucky that I am still here. I probably should have died 5 years ago. I can accept that. I can say it almost candidly now. (Lily) To find a place of “neutrality.” That's not to say “accepting” the diagnosis, but rather trying to find some “rest” from the constant worry and distress, etc. (Therese) Many women express pride in their “battered” bodies. In other words, their bodies have been “at war” and survived the battles to show for it. (Therese) A cancer diagnosis changes everything, including our priorities. Sexuality may not be on the radar screen once diagnosed. Staying alive becomes the priority. (Therese) Theme 3: How sociocultural expectations and structures impact survivors My oncologist and her nurses have never discussed sexuality with me throughout my journey. Why is that? Do they think that once a woman has cancer, she never has sex again…? (Therese) You know you can wait 4 to 5 hours to get in to see your oncologist, who is already running hours late. You’re lucky to get 10 min, and you really want that focused on your treatment plan, you know your test, your scans, your medications, or whatnot, to even delve into the subject of like sexual dysfunction or intimacy problems like they don’t have the time, nor the resource, most of them, to even get into that with you. (Edith) We tend to judge ourselves rather harshly and women seem to naturally express guilt at not being able to complete “certain tasks, housework, social commitments, etc.” Whether it’s lack of time, family pressures, etc. Adding a cancer diagnosis to the equation is extra difficult. Combined with a sense of guilt that our bodies have failed us, [there is also] guilt that we aren’t necessarily able or well enough to look after our families, ourselves. (Therese) Intersection (subtheme) 1: Sex and intimacy after cancer From my perspective, the sex experience was “rote,” the farthest thing from my mind and I was simply satisfying my partner’s needs. […] For women who are new to their diagnosis, I would think sexuality would be low on their priority list. (Linda) It’s taken me years to get to the point where I’m completely comfortable that this is the way it is now, and I no longer grieve the way that it was. Theme 5: Addressing the accessibility needs of survivors using eSense-Cancer If eSense is to be tailored for women experiencing sexual dysfunction due to a cancer diagnosis, suggest including [a] discussion of cancer-related fatigue [and] energy conservation. (Therese) 67 Themes and their Intersections (Subthemes) Illustrative Quotes Based on my personal experience, I would have had difficulty writing as my hands were very painful throughout my chemo. I would recommend documenting a way to allow users to listen to the page content aloud. (Gillian) I think embedded videos always give– they break up some of the dryness of just like lots of text. They’re a little more exciting, and I do think a lot of us struggle with that brain fog. And I think when you do get these big, long pages you start skimming, and you’re not really absorbing. And you might miss some really crucial information, because your brain’s just like, okay, let me get to the end. So, videos kind of stop that, and make you, or even having like if you have a big, long page of text, have a little button at the bottom where you know, prefer to listen to this? Click here. And there’s a little audio file that maybe reads that. Maybe that’s an alternate way to help get it across. (Edith) Chemo is, it’s a very common side effect of chemo or cataracts. And cataracts reduce the amount of light that gets into your eye, which means that you need a crisper contrast, so black on white, black on yellow. Yellow text on black is, it’s hard. It’s harder to read light text on dark backgrounds. So yeah, there needs to be that crispness in order, and I haven’t tested it, but is there the capacity within the program to enlarge the font? That is quite helpful too. Yeah, the vision impact from chemo is significant and very common. (Linda) Intersection (subtheme) 2: Fostering empowerment for cancer survivors who use eSense-Cancer I think it’s like [Linda] said perfectly; it’s about maybe just massaging some of those words, pulling up that thesaurus and saying, “What’s a better word that we could use instead of problem or dysfunction?” Maybe there’s a kinder, gentler word to use where the message is still the same, but it’s not as hurtful. […] Certain people don’t like certain words, but again, you are never going to make everyone happy because what is pleasing and empowering to one person may be offensive to someone else, um and you don’t want [the] language to be just boring and gray throughout the whole thing. […] Constantly you know– well “those with.” So, I think as long as you give that little blurb, an intro, and that people understand what your motivation is, I think it’s OK. (Edith) If it’s just geared to women going through cancer specifically [gynecologic] cancer, I would really love to see just a little more examples of the women. Let’s give them all a different [gynecologic] cancer! (Edith) 2.4.2 Research Question 2: In light of the findings from Part 1, how should an online digital sexual health intervention be modified to meet the needs of survivors? The key themes from Research Question 1 were then used to address Research Question 2, to inform the adaptation of eSense. Overall, two key themes emerged in Research Question 2: (1) acknowledging and integrating the cancer experience within eSense-Cancer and (2) addressing the accessibility needs of survivors. Similarly to Part 1 of this analysis, the 68 intersection of both themes underlines the need to foster the empowerment of cancer survivors through this adaptation of the intervention. It is of note that these themes expand beyond the adaptation of the digital health tool itself to inform future interventions designed to support gynecological cancer survivors as they cope with sexual health changes (see Figure 3). Figure 3 The two key themes and their intersecting subtheme addressing Research Question 2 Theme 4: Acknowledging and integrating the cancer experience within eSense-Cancer A resounding theme pertaining to the adaptation of eSense-Cancer concerns the accurate representation of the realities of cancer survivors throughout the modules. Patient partners requested acknowledgements or reminders of experiences they may face in their day-to-day lives: I think there should be some mention [of] acceptance and love of our “new” bodies after cancer treatment. Touch our scars, look at our changed bodies, and learn to love them. There could be a reminder here about ‘re-discovering our beautiful post-cancer bodies.’ (Edith) 69 Patient partners frequently requested additional information regarding cancer in general or sexual difficulties after cancer. They would point out particular sections within eSense and then remark on the cancer-specific information that should be added. For example: Overall, there is a lack of addressing cancer throughout. While there is one example of a woman dealing with a cancer, there is little mention of cancer elsewhere. If eSense is being developed for use in women dealing with gynecological cancers there needs to be a huge [emphasis added by the patient partner] increase in addressing [cancer] and discussion on the most common things that we deal with such as removal of all reproductive parts, [which] includes being put in instant menopause, vaginal scarring, dryness and loss of lubrication; painful intercourse; general anxiety and depression relating to cancer “always being on our minds”; fear of sex causing injury or inflammation that could lead to cancer recurrence… (Edith) However, our patient partners periodically called for more tailored examples and expressed that the ones featured in eSense were not illustrative of their cancer experience: Again, I would just like to see more examples and information related to women dealing with cancer. If eSense is geared toward cancer patients, then most examples should include cancer-related situations. To me, the information provided seems much more geared towards women with all other types of struggles (abuse, abandonment, confidence etc.) but rarely anything to do with cancer. (Edith) The patient partners also provided advice on new content unrelated to sex or cancer that they viewed as still being vital for survivors to have. They were particularly effective in highlighting other areas of improvement regarding the content to support future survivors as they progress through the intervention. This included adding resources for users to turn to should they 70 require them, or general wording to help users persevere through the emotional material, as illustrated by this patient partner: There are a lot of really great online resources out there for working with difficult bodily sensations and emotions. I wonder if you would want to link some optional sources here so that the user can find an approach and voice that works well for them. (Dianne) Theme 5: Addressing the accessibility needs of survivors using eSense-Cancer A second key theme pertained to the modifications required to address the accessibility needs of cancer survivors as they worked through eSense. Specifically, accessibility in this context refers to ways in which eSense-Cancer can address the functional needs of survivors. These necessary adjustments were informed by survivors’ distinct physical and cognitive limitations. Most of these were explicit formatting or content suggestions. Patient partners suggested recognizing side effects which could impact the accessibility of eSense-Cancer and recommended including prompts to remind users to listen to their bodies and any physical constraints experienced as they completed the activities in the program. For example: For individuals that have high levels of pain, should a notation be added that references doing these exercises around a person’s medication regimen? In my personal experience, I would have to take my pain medication and be in a state where I could focus on anything but pain. (Gillian) Another proposed change included adding multimedia forms of communication (i.e., also using video and/or audio formats to convey the material on the program) to augment the written 71 text. The patient partners wanted fewer clicks required to expand the many drop-downs or navigate from tab to tab to access the written content, as well as to lessen the cognitive load involved in reading the dense material. For example: As I have gone through all the modules, I find there are many drop-downs, some of which could be missed. I would recommend removing some of the drop-downs to make it more user-friendly for the person to read and not have to click back and forth. (Gillian) Some also commented on vision changes resulting from their cancer treatment, and as such, made specific suggestions to font size and colours including: There are some accessibility issues with font colours here. Green on green and blue on green makes the text hard to read, and just about impossible for people using “e-reading” and accessible word-reading software on their computers. Please consider changing font colours. (Edith) Patient partners also commented on improving the clarity of the text and emphasized some sections that could be simplified or rewriting the text to make the meaning more explicit. Indeed, through their comments regarding certain sections of the program, it was apparent that some of the material disseminated was difficult to understand, and the patient partners requested that the complex text be simplified into more accessible language. One of the patient partners commented: Can we lessen it? Can we you know, take some of the denseness, […] the academic and the scientific jargon out? And I’m not talking about dumbing it down. I’m just [thinking] can we… In fact, can we make it a little sexier? Can we kind of jazz it up a little bit? (Therese) 72 Thematic Intersection 2: Fostering empowerment for cancer survivors who use eSense-Cancer The intersection of Themes 4 and 5 constructed a new subtheme: empowering survivors who complete eSense-Cancer. Indeed, the empowerment of survivors emerged as a key component that ought to be achieved in eSense-Cancer, and for this goal to be accomplished, the recognition of the cancer experience and survivors’ accessibility needs must be realised throughout the intervention. This was denoted through our patient partners’ request to clarify the intentions and the goals of eSense-Cancer as well as the message it conveys. In fact, one patient partner stated: I think that we just continually need our participants to move forward. And you know, this is about you before it’s about anybody else. It’s kind of like, you know, that scenario in the airplane where you put the mask over yourself, this– this is about you, and this is about your sexual health. And everybody in your life will benefit – whether you have a sexual relationship with them or not – because if you are more comfortable with who you are sexually, you’re just a better person. Let’s just name it. […] You know you need to be empowered to be who you are and where you are in your life and so let’s not give people permission to fail at this, or to give up […], let’s empower them to move on. (Linda) The topic of empowerment also often arose in conversations regarding the vocabulary used throughout the modules. Our patient partners discussed how language plays a critical role in framing the experience survivors have with the program. Further, they suggested that the use of inclusive and shameless language is warranted to foster a sense of empowerment in eSense-Cancer users: 73 I think you actually have an opportunity to empower people, here, you know? Yes, let’s try and identify the stinging words, [and] see which ones like ‘dysfunction,’ we still need to use. So, let’s give people a new framework, but also to say you know, at any point throughout the module, [if] you feel uncomfortable with what we’ve said, if there’s something here that makes you upset, take a note because that’s really important. (Linda) The patient partners remarked that an improvement to the language would be more inclusive of the cancer experience, but it could also serve to help improve the overall feasibility of the program by using language that is adapted to survivors’ reality. When discussing the array of “sting words” (as coined by our patient partners), it was clear that no one term could satisfy all patient partners as opinions differed within the group. However, they proposed clearly addressing this concern by acknowledging it at the onset of the program: We can’t make this accessible to everybody at every instant, because we’re all bringing our own unique selves to it. Right? I think that if we can identify what stings to us right now, then we can hopefully address some of it. Either by reframing it, giving some tools, and so on. (Linda) Patient partners also advocated for all gynecological cancer survivors to be represented in eSense-Cancer, despite only survivors of ovarian cancer participating in this collaborative work. Indeed, they felt that if a resource was to be created for people living with the repercussions of gynecological cancer such as ovarian cancer, then survivors of all types of gynecological cancers should benefit from it. In fact, similar consequences do arise across gynecological cancer types 74 as identified by the patient partners who mentioned hearing comparable stories from other gynecological cancer survivors in various support groups: I find it's a very common [experience], not just with myself, but with other women on support boards and […] it seems to be a very common occurrence. (Edith) Hence, this meant including case examples that represented vulvar, cervical, uterine/endometrial, and vaginal cancers as well as ovarian cancer as described by this partner: I personally feel like it would be a good idea to include all [gynecological cancers]. Sexual health is so important and during/after cancer many feel lost and alone. While ovarian cancer is what we [the group] have, I think including others would help immensely. (Lily) 2.5 Discussion Acknowledging the complex processes that comprise gynecological cancer survivors’ experiences served to inform the analysis of the patient partners’ feedback regarding the adaptation of eSense-Cancer. Overall, in Research Question 1, we found that the overlapping impacts of the biopsychosocial side effects of cancer, time, and societal expectations all served to influence sexuality after gynecological cancer. Indeed, our patient partners discussed a multitude of physical and psychological impacts that cancer treatment had on themselves and their social lives with family, friends and partners. While research has thoroughly covered the side effects of cancer and the common resulting sexual difficulties like lack of lubrication, difficulty reaching orgasm, low desire, and pain with vaginal intercourse, as well as the psychological distress 75 associated with this deterioration in sexual well-being, our patient partners shared insights into the specific mechanisms that give rise and maintain these concerns (Aaronson et al., 2014; Mayer et al., 2019; Roussin et al., 2023; Stewart et al., 2001; Traa et al., 2014; Trivers et al., 2013). Physically, survivors are left with numerous conditions which range from mild to severe, impacting daily activities. These side effects can be attributed to treatment type, including surgery, chemotherapy, and radiation, each of which brings different effects on the body and potential chronic physical limitations. While physical symptoms like genital pain, fatigue, and overall body aches and pain certainly hindered any willingness to engage in sex, what came through in the patient partners’ stories was the emphasis on the psychological barriers which impeded any sexual desire. In fact, anxiety-related thoughts were principal actors in low desire and arousal. Moreover, the various psychological sequelae of cancer beyond anxiety, like anger, frustration, grief, exhaustion, and abandonment can be all-encompassing for survivors. To that effect, sex can become an afterthought as survivors learn to navigate and live with these side effects throughout the cancer journey. During treatment specifically, survivors are solely focused on managing the harsh symptoms of chemotherapy, radiation and surgery and the complete shift in priorities that may occur at any given change in survivors’ health situation contributes to the fluctuations in their interest in sex. The psychological challenges caused by cancer also require a period of adjustment which may take priority over sexuality. Hence, beyond the fact that gynecological cancer survivors experience low desire or lack of interest in sexual activity, the patient partners highlighted the transitions that occur at varying stages of the cancer journey and the shifts in perspective that shape their priorities and eclipse sexual well-being at times. In fact, this rearrangement of priorities constituted a significant portion of the changes that 76 were experienced by survivors who felt that the immediacy of the diagnosis and the thoughts regarding whether or not they would survive took priority over any other concern related to sexuality. Nonetheless, several patient partners also shared how, after a certain period of stability health-wise, survivors are often eager to return to living life and enjoying sexuality “as it was before cancer,” however this is seldom the case. Indeed, the cancer community often refers to this post-cancer reality as survivors’ “new normal.” Yet, we propose the term “next normal,” since this is only but a new stage of life and one that isn’t necessarily immutable. This stems from the evidence showcased by our patient partners who described eventually coming to a place of acceptance for their situation and renewed appreciation for the gift of life. Namely, this resilience which had previously been reported on in the literature is a display of post-traumatic growth which “refers to a change in people that goes beyond an ability to resist and not be damaged by highly stressful circumstances”; it involves a movement beyond pre-trauma levels of adaptation (Tedeschi & Calhoun, 2004, p. 4; Wenzel et al., 2002). Post-traumatic growth, then, has a “quality of transformation” as described by Tedeschi and Calhoun (2004), and our patient partners certainly presented how cancer changes one’s entire life, with many opportunities for setbacks, but also personal development. Accordingly, despite the grief felt by survivors from the various post-cancer changes to their well-being and overall sexual satisfaction, with time, our partners expressed how some may find a place of acceptance, bringing a certain rest from the anxiety that cancer causes, and allowing them to reorient their attention towards activities like sex. Other experiences which significantly impact survivors’ experience with sex concern the relationship difficulties which may arise following diagnosis and treatment. Our patient partners 77 raised the fact that commonly, survivors’ partners may withdraw from the intimate relationship due to a sense of overwhelm regarding their loved one’s health situation and needs. This can cause breakdowns in relationships and many survivors may experience distance in the relationship leading to the cessation of any sexual relationship. This may cause further frustrations and difficulties with effective communication may translate to arguments and hostility between partners. Therefore, this causes many survivors to navigate a solo sexual relationship (i.e., sex by themselves; masturbation) after cancer, even within a relationship. Cancer also engenders many repercussions to survivors’ perceived sense of self and social responsibilities, which in turn affects their relationships and sexual well-being. A central theme regarding these impacts concerned the sociocultural messages, expectations, and pressures which serve to shape survivors’ beliefs regarding their role in the family and as partners. Indeed, in line with prior findings, our patient partners voiced feeling a sense of obligation to continue caring for their family members despite the challenges imposed by cancer (Bober et al., 2019). With regard to engaging in sex with a partner, our patient partners, like other survivors, stated feeling the need to satisfy their partners sexually, despite not feeling inclined to partake in sexual activity (Juraskova et al., 2003; Oveisi et al., 2023). These beliefs are fundamentally influenced by normative views wherein partners must engage in sex for a relationship to thrive, which puts guilt-ridden survivors like our patient partners under pressure to perform despite all the consequences of cancer, which may range in severity depending on the stage they find themselves in. Moreover, the social responsibilities felt by our patient partners towards their children, partners, parents, and friends remain a large source of stress and anxiety at a time when they should be prioritizing their well-being and their health, causing them to disengage from any thoughts of sex. 78 Societal standards of beauty and femininity also influence survivors’ sense of self and disposition to sex (Juraskova et al., 2003; Oveisi et al., 2023; Reis et al., 2010). Indeed, our patient partners emphasized a sense of distrust towards their bodies and a sense of failure as women after cancer due to their altered sexual functioning, further hindering their overall interest in engaging in sexual activity. Practically, they discussed how their body no longer worked “the way it was supposed to” and left them longing for the way sex was before cancer (i.e., pleasurable instead of painful, natural lubrication instead of dryness, easily achievable orgasms, etc.). Like much of the previous literature, their concerns also pertained to their body image following cancer treatments which left them feeling ashamed and embarrassed (Abbott-Anderson et al., 2020; Reis et al., 2010; Roussin et al., 2023). In fact, many patient partners used strong and evocative vocabulary conveying the judgmental thoughts they possessed regarding their bodies arising because of the standards put on themselves to be seen as desirable and adequate partners. Indeed, our patient partners reported that these thoughts were often tied to fears and beliefs that their partner may be repulsed by their changed body after cancer treatment or that they may disappoint them because they can no longer satisfy them as it was before cancer. This highlights the intersection of societal beauty standards, expectations within relationships and the physical traces of surgery, radiation and chemo, like scarring and weight fluctuations, that all worked together to engender further psychological distress and withdrawal from intimacy with partners. The cancer world is not immune to negative societal messages which are engrained in survivors and healthcare providers alike, especially with regard to gynecological cancer (Kotronoulas et al., 2009; Paulsen et al., 2023). One such example raised by our patient partners relates to how sociocultural stigmatization regarding women’s sexual organs – even outside of the context of sexuality – fosters feelings of shame and embarrassment in survivors. 79 Consequently, this poses a barrier to information-seeking behaviour as outlined in the literature (Bodurka & Sun, 2006; McCallum et al., 2012; Roussin et al., 2021). However, societal reticence about sexual matters also impedes access to readily available knowledge about sex after cancer, leading to misinformation among survivors. This lack of education on the subject ultimately also contributes to concerns about sex. Indeed, the patient partners shared some common beliefs held by survivors wherein sex could cause a cancer recurrence or inflammation, leading to cancer worsening, or even that cancer could be “transmitted” through intercourse. These misconceptions directly arise from a lack of factual information and proper sexual education about sex and cancer and demonstrate the need for better and tailored resources. According to the patient partners, these thoughts were especially prevalent in the throes of remission when survivors are left to their own devices to navigate sexuality, without reliable sources to demystify these false beliefs. The consensus amongst patient partners was that they felt the doctors and nurses around them deprived them of the space to discuss such matters, nor did they provide the adequate tools or resources to understand the reality of sex after cancer. In line with the literature, they stated the lack of time in clinical interactions for effective communication (Kotronoulas et al., 2009; Stead et al., 2003). Indeed, systemically, the lack of time allocated for patient-provider interactions further hinders dialogue and proper, holistic care. Oncologists often limit their interactions to the most vital information, leaving any discussion of the effects of cancer on other areas of life and well-being untouched (Trivers et al., 2013; Wiggins et al., 2007). However, this can also be explained in part by a general discomfort towards topics regarding sexual matters informed by the stigmatization of sexuality (Kotronoulas et al., 2009; Paulsen et al., 2023). 80 Altogether, the sociocultural norms and systems in place perpetuate shame and misinformation in survivors through negative messages, intolerance, and censorship of any matter related to female sexuality. Moreover, the acquired trait of selflessness and abnegation resulting from the socialization and expectations of women as caretakers leaves survivors with a perceived sense of duty to care for their entourage even when their bodies cannot function due to treatments and their side effects, leaving many with additional guilt and worries, and decreased interest in sex. On a positive note, our patient partners did identify a key method in which sex after cancer can be approached to help alleviate some pressures as outlined above. Indeed, they endorsed reimagining intimacy after cancer – a common concept which has been thoroughly documented in previous research (Butler et al., 1998; Cleary et al., 2011; Flynn et al., 2011; Roussin et al., 2023). In short, with the understanding that sexual activity following cancer treatments is informed by many aspects related to the effects of cancer, as well as the systemic structures and norms which uphold negative beliefs regarding oneself and sex, reframing what constitutes sex, and moving away from normative expectations and sexual scripts may foster a more positive outlook on the matter. Our patient partners offered suggestions regarding intimacy such as cuddling, gentle touch, and emotional openness as a proxy for connection when it can be difficult to take part in sexual intercourse. Nonetheless, in order to redefine intimacy in a relationship, our partners stressed the need for greater communication between partners. Topics relating to psychological pain, and fears related to sexual activity, as well as pressures and expectations, must be discussed between partners such that a next normal may be established and anxieties may be relieved. 81 Taken together, one can understand how the multidimensional side effects of cancer and its treatment interact with one another, further exacerbating the challenges experienced by survivors with regard to sex after cancer. Certainly, the experience of gynecological cancer survivors with respect to sexuality and sexual difficulties is much more complex than what had been reported in previous studies regarding the impacts of treatment on sexual health and one must recognize the interplay of three main themes: the biopsychosocial effects of cancer on the person, the transitory stages of cancer and how sociocultural expectations and structures impact survivors. Only once we comprehend such realities can we start appreciating the complexities of navigating sexual well-being in a context as distressing as cancer. Regarding Research Question 2, we found that much was learned about the exact sections in need of tailored content since the patient partners shared their commentary through surveys organized in sequential order of the platform’s modules. We were then able to hold group discussions to further our understanding of their written feedback and recommendations, exploring more thoroughly the relationship between survivors’ challenges and the opportunities for the adaptation of eSense-Cancer. It should be emphasized that all aspects of the cancer experience resulting from our analysis of Research Question 1 necessitated acknowledgement so far as the patient partners were concerned. However, it is beneficial to delve into certain subjects more prominently to highlight specific gaps that needed be addressed in eSense-Cancer. The multidimensional effects of cancer and its treatment and their impacts on sexual well-being encountered by our patient partners were raised as the basis for their content suggestions. For example, learning about the anxiety engendered by cancer and the specific thought patterns that plague survivors could directly inform concrete eSense-Cancer examples and case studies as requested by many patient partners. Other patient partners demanded that 82 more background information regarding sex and cancer be provided. While these calls for educational material go without saying in a program deemed to help alleviate distress around common experiences, the alarming root of such request stems from the lack of information provided to survivors as they are left to navigate life beyond cancer (de Rooij et al., 2018; Trivers et al., 2013). Besides being raised by our patient partners, this lack of education is widespread, especially when it comes to sexual health after cancer (de Rooij et al., 2018; Sekse et al., 2015; Stead et al., 2001, 2007; Trivers et al., 2013). According to our patient partners, another concern which ought to be acknowledged in the program concerns the shifting priorities that occur due to cancer. In fact, not only does this shift explain survivors’ disinterest in sex, but it may have bearings on survivor’s capacity to undertake a program such as eSense-Cancer. Hence, the patient partners recommended acknowledging this experience in the digital health tool, both to normalize this common experience, but also to reduce guilt should a user need to step back from the program as they manage a recurrence or new cancer scare. A similar consideration in relation to the program’s flexibility was cited by Gorman et al. (2022) in their study regarding the necessary components for an intervention aimed at coping with reproductive and sexual concerns after cancer. Moreover, our patient partners repeatedly advocated for tailored examples of effective communication between partners about complex feelings experienced by survivors as a means to foster intimacy and closeness in the relationship. Indeed, they indicated that tools focused on learning how to best communicate with partners who may be withdrawn could help delineate boundaries for safe and pleasurable sexual intimacy. These requests were comparable to what Gorman and colleagues (2022) concluded about including skills to raise partners’ awareness about survivors’ realities in their intervention. The partners also requested that reminders be 83 added throughout the modules to normalize the fact that sexual scripts need to be adapted after cancer, and that intimacy likely won’t resemble “how things were before,” but most importantly, that this is okay. Thus, rethinking what constitutes intimate acts and giving tools to survivors who work through eSense-Cancer was imperative to our patient partners. Altogether, this exemplifies the types of recommendations and demands for particular additions to the content that the patient partners emphasized to better acknowledge how cancer can impact one’s life, sexual well-being, and progress throughout the eSense-Cancer platform. When it comes to accessibility concerns, our patient partners raised multiple areas of improvement in eSense considering its future user population. While some requests corresponded to content suggestions, most were associated with formatting guidelines that should be followed in order to render the program more accessible to cancer survivors. One postulation from our patient partners involved the time between treatments, recovery, remission, and recurrence. They insisted that it must be factored in as one evaluates their ability to undertake such a large endeavour, like the current burden of work involved in eSense-Cancer. Hence, it must be taken into account for future research considerations of eSense-Cancer, but it must also be acknowledged in the program itself to reassure users of these often lingering and distressing physical and cognitive difficulties. Similarly, the long-term physical and cognitive effects experienced by survivors and detailed by our patient partners should be recognized throughout the program. This would remove shame around such limitations and motivate users to progress despite these challenges by providing alternatives and tips to circumvent commonly experienced effects like pain, fatigue and brain fog (Abbott-Anderson & Kwekkeboom, 2012; Lokich, 2019; Westin et al., 2016). 84 It became apparent through our conversations with the partners that some words of acknowledgement regarding the physical limitations experienced by survivors and endorsements of possible accommodations were necessitated throughout the program. Indeed, physical limitations ranging from fatigue, neuropathy, vision problems, and brain fog were all raised as conditions that needed to be addressed within the program to assist users who may need to adjust their participation accordingly. To address these difficulties, our patient partners advised our team to revise some formatting concerns – such as audio/video content, font sizes and colours – to lessen the physical and cognitive burden on its users. Lastly, for the sake of clarity, they also suggested lessening the text, to improve accessibility for survivors who experience the preceding adverse effects of cancer. Regarding suggestions to improve the format of eSense, patient partners’ leading recommendations concerned adapting some of the content into audio/video format in addition to written form as it would give users the option to work through the material in a manner that best suits their needs. Indeed, it can be hard to assimilate much of what is offered in eSense-Cancer if survivors rely solely on written content. In fact, they often experience cognitive overload between their multiple worries and anxious thoughts, and the brain fog occasioned by cancer and its treatments can hinder their ability to absorb the material (Abbott-Anderson & Kwekkeboom, 2012; Lokich, 2019). Moreover, the well-documented effects of chemotherapy on vision discussed by our patient partners provided an additional source of predicament in regard to accessibility and prompted our advisory board members to highlight the need for greater font size and contrast between colours in the program (Maino et al., 2000). Thus, offering the material in video or audio format could aid in the context where a survivor working through eSense-Cancer experiences long-term adverse effects due to treatments. 85 Our patient partners emphasized also the need to ponder the intentions of the program such that it could uplift and empower its users both throughout the modules and beyond. Indeed, our patient partners disclosed the unfortunate way in which the cancer world frames much of one’s experience with the disease as negative, and the members on the advisory board were adamant that eSense-Cancer should be a tool that empowers survivors rather than one complicit in the hegemonic medical discourse. Indeed, through requests for positive and inclusive language and vocabulary, our partners highlighted the need to foster a positive framework in the program. Moreover, it is imperative to note how acknowledging the sophisticated particularities of their experience post-cancer and addressing their accessibility needs comprehensively further cultivates this notion of empowerment. To this extent, not only would rethinking the vocabulary be more inclusive of the cancer experience, but it could also serve to help improve the overall approachability of the program by using language that is adapted to survivors’ reality. In short, our patient partner strongly encouraged adapting eSense-Cancer such that it would leave survivors not only feeling good about themselves but also about their progress towards a healthier, happier life following cancer. Finally, it should be noted that throughout this engagement with the patient partners, they raised the idea of generalizing eSense-Cancer to gynecological cancer survivors of all types to benefit a larger population in need of such survivorship care. Indeed, while our research originally centred on ovarian cancer survivors, the partners advanced the idea of broadening this work to help other survivors who often have similar concerns regarding their sexual health after cancer. Indeed, through their close encounters with survivors of uterine/endometrial, vulvar, vaginal and cervical cancer survivors (often amidst support groups), our partners were able to emphasize some commonalities within their experiences. In fact, from the discussions that 86 occurred within the focus group meetings, it was clear that there were diverging experiences even between the ovarian cancer survivors on the advisory board themselves, which leads us to posit that one’s experience of sexual difficulties following cancer isn’t necessarily dictated by the cancer type, but by a variety of factors such as the stage of cancer at diagnosis and its severity and/or the treatment type (i.e., surgery vs. radiation vs. chemotherapy) and its aggressiveness, etc. as outlined in previous research (Chang et al., 2023). As evidenced by previous literature on the matter, the different types of gynecological cancers have overlapping treatment methods, and these share many common sexual side effects (Boa & Grénman, 2018; Westin et al., 2016). Hence, it became apparent that the insights gleaned from our patient partners could actually be generalized to a wider group of survivors while keeping in mind that each survivor may have a unique experience. To our knowledge, there is limited research that has specifically focused on adapting a sexual health tool for gynecological cancer survivors (Gorman et al., 2022). Therefore, collaborating with patient partners and obtaining their direct insight regarding the common concerns experienced by survivors as they were reviewing eSense was instrumental in our understanding of the gaps within the program and sexual health care after cancer. The breadth of information and considerations presented by the group of patient partners in this collaboration certainly will contribute to the growing body of literature on digital health tools for gynecological cancer survivors and inform the adaptation of eSense-Cancer. 2.6 Strengths and limitations A key strength of this community engagement relates to the diversity of our patient partner demographic characteristics. Indeed, despite not having formally collected demographic data from our patient partners, in the context of their collaboration with the research team and 87 through the focus group discussions, they spontaneously provided information as to their cancer diagnosis (including type and stage), relationship status, age, ethnicity, number of recurrences, and time since first diagnosis. This voluntarily communicated demographic data allowed us to conclude that our group of partners provided a wide range of experiences despite the small group size. In fact, while the reality of cancer was common throughout the group, we were able to observe some differences in experience and opinions during our discussions which led to further refinement of the data. Conversely, a limitation in this work concerns the limited range of cancer types represented in our small sample of patient partners as all of them had a history of ovarian cancer, but we collectively agreed to widen the scope to represent all gynecological cancer survivors’ experiences in eSense-Cancer. Indeed, the original purpose of the study was geared towards ovarian cancer which explains the limited sample in that regard. However, as the collaborative work progressed, eSense-Cancer’s targeted population shifted from ovarian cancer survivors to all gynecological cancer survivors to be more inclusive, yet the group of patient partners remained as is. Nonetheless, the evidence that the patient partners introduced often emerged from their knowledge gained in support groups where they could hear about and relate to the lived experience of survivors of other types of gynecological cancers. Hence, while they could not entirely speak for other types of survivors, they could relate some information that they had learned through these different connections. Moreover, ovarian cancer being one of the more aggressive gynecological cancers with regard to its prognosis, treatment type, and outcomes, it is conceivable that its survivors may experience a vast array of consequences applicable to other gynecological cancer survivors who may endure similar repercussions, but to varying degrees. 2.7 Conclusions 88 To adequately adapt eSense-Cancer and offer a representative account of the cancer experience and subsequent sexual concerns, understanding the complex interplay between the dominant themes informing survivors’ experiences was indispensable. Our patient partners’ accounts of the effects of cancer and the sexual difficulties encountered after treatment are consistent with previous work on longitudinal impacts lasting into survivorship. However, the patient partners’ direct accounts of the effects of cancer treatments on their body, mind and relationships in relation to the period of the cancer journey and the sociocultural expectations and norms placed on survivors were instrumental in understanding the gaps within eSense and grasping what accommodations had to be made for future users of eSense-Cancer. Indeed, conducting the adaptation of an online program for gynecological cancer survivors could not have been inclusive and appropriate without a thorough understanding of the multidimensional elements informing survivors’ reality. Hence, the recommendations for the modifications brought to eSense to create eSense-Cancer warranted a thorough investigation to properly recognize the cancer experience throughout the modules, as well as adapt the platform to address the accessibility needs of survivors as users of the program. Only then could eSense-Cancer be an adequate resource for gynecological cancer survivors and properly empower its future users through knowledge and tools which were otherwise unavailable to a vast majority of people living beyond gynecological cancer. 2.8 Implications for Psychosocial Providers and Future Considerations Directly learning from patient partners about the specific needs of their community provides invaluable knowledge for future researchers and psychosocial providers. In this case, much was learned about the experience of living with and beyond cancer from our advisory board, in addition to specific considerations when undertaking the creation of a tailored 89 intervention for their specific needs. The insight shared by our patient partners also expands beyond the specifics of eSense-Cancer and takes into account certain reflections for general guidelines and practices when involving gynecological cancer survivors in research and programs. Consequently, the value of our current inquiry is not lost on us. Indeed, the recommendations and the lived experience imparted by the community members who participated in this collaboration may serve others in the field who contemplate working with gynecological cancer survivors or developing survivorship tools. Hence, this work lays the foundation for the development of a knowledge translation toolkit. 90 Chapter 3: Developing a Toolkit to Facilitate the Creation of a Skills-Based Digital Platform for Sexual Health in Gynecological Cancer Survivors 3.1 Translating Patient Partner Knowledge to the Greater Medical Community So much can be learned from patient engagement in research. However, the experiential knowledge and the insights provided by patient partners may remain caught in the academic pipeline of research without impacting care as is the case with many other findings (Balas & Boren, 2000; Lane-Fall et al., 2019). Therefore, the delay in which research outcomes make their way into practice hinders patient partners’ aspirations, as well as the expectations of the general public who fund research, to see knowledge translated into action. Indeed, when it comes to inquiries into the betterment of the care offered to cancer survivors, patient partners may be especially interested in opportunities to provide practical improvements that can improve the lives of future survivors (Stoop & Duran, 2021). This drive to participate in research was emphasized in a qualitative systematic review by Lauzon‑Schnittka and colleagues (2022) looking at patient partners’ motivations with regard to their engagement in research. In fact, ‘altruistic motivations’ was the theme presented most frequently to explain patient partners’ engagement. Hence, in an effort to increase the impact of patient partners’ research collaborations, prioritizing the translation of our findings from research to practice may prove to be effective. Therefore, researchers ought to capitalize on the rich experiential knowledge gained and share it widely to increase its reach and bearings on other survivors’ experiences, especially since it has been demonstrated that patient partners often strive to better the experience of those who may face the same challenges as them. 3.2 Aim of Chapter 3 91 Given the diversity, depth, and versatility of the knowledge gained from our patient partners, and a recognition of their pivotal role in knowledge translation (KT), the aim of Chapter 3 was to create a framework for the development of a KT toolkit aimed at informing the creation of tailored survivorship care materials and addressing guidelines to put this material in effect. 3.3 Knowledge Translation Framework Many frameworks have been developed to help guide knowledge translation efforts. Nonetheless, I chose the Knowledge to Action (KTA) framework established by Graham and colleagues (2006) to inform the planning and execution of my KT tool (see Figure 4; Straus et al., 2013). This framework has been used to conceptualize and translate research findings in healthcare settings to varying degrees, both through the application of the knowledge creation funnel, and the action cycle for a multitude of healthcare settings and resources (Field et al., 2014; Milat & Li, 2017). Moreover, its flexible nature and usage in diverse contexts offer advantages for the creation and dissemination of our tool aimed at allied healthcare providers who want to create sexual health after cancer resources. Importantly however, it was essential to adopt a framework which could lend itself to the planning stages of the KT efforts – as does the KTA framework – since other well-known frameworks such as PARiHS and RE-AIM focus predominantly on the implementation of KT efforts and its evaluation, which fall beyond the scope of this thesis (Milat & Li, 2017). 92 Figure 4 Knowledge to Action framework from © Straus, S.E., Tetroe, J. & Graham, I.D. (2013). Knowledge Translation in Health Care, Moving Evidence to Practice. West Sussex: John Wiley & Sons. Page 10. By permission from publishers. 3.4 Situating this Thesis within the Knowledge to Action Framework While Chapter 2 of this thesis can be situated in the center of the KTA framework – in the knowledge creation funnel – some considerations for the application of the KT tool in question are within the scope of the action cycle. Indeed, while the objectives presented in this thesis fittingly fall within the three levels of the funnel as described by Graham and colleagues, the success of its implementation within survivorship care settings rests on the considerations given to the properties within the peripheral action cycle which facilitate its use in practice. The relevant facets of the framework that will be considered for this end-of-grant KT tool dissemination are the following: (1) knowledge inquiry, (2) knowledge synthesis, (3) knowledge 93 tool/product, (4) identification of the problem, determination of the know/do gap and review and selection of the relevant knowledge, (5) adaption of the knowledge to the local context, (6) barriers and facilitators to knowledge, and (7) selection, tailoring and implementation of the product. The creation of this toolkit will allow future researchers to continue the next step of the research process, including assessing the barriers and facilitators to implementation, and the outcomes of its implementation, as well as monitoring and evaluating its use when implemented. (1) Defining knowledge inquiry The knowledge inquiry process of this knowledge creation endeavour consisted of the patient partner engagement and focus groups discussed in Chapter 2. While traditional knowledge inquiry consists of a multitude of primary sources to be synthesised in one knowledge translation product, our inquiry is focused primarily on our community engagement as it consists of a targeted approach to a novel objective. This work was novel in that to the best of our knowledge, only one other research team sought to engage survivors to adapt a sexual health tool, and this was using semi-structured interviews, unlike our engagement in deeper, more focused work with patients as partners (Gorman et al., 2022). As described by Tetroe et al. (2011, p. 425), the knowledge inquiry should “fill the known gaps in the knowledge base, with a focus on solutions” and our collaborative work with patient partners sought to do just that: target content that ought to be addressed with regards to the sexual health concerns of gynecological cancer survivors as well as highlight considerations to tailor a digital health tool for them by delineating concrete recommendations for its improvement. (2) Outlining the knowledge synthesis 94 The second aspect of knowledge creation as illustrated in the KTA framework concerns knowledge synthesis. In Chapter 2, we used an inductive approach to analyse the qualitative data that emerged from patient partner engagement, wherein the respondent’s meaning was centred during the coding process such that the data itself informed the codes used for the analysis. This patient-centred approach, paired with the thorough research conducted for the background understanding of the gaps in sexual health care after cancer, allowed for a precise understanding of the gaps in survivorship care delivery. In other words, although the previous literature outlined gaps in sexual health care needs after cancer (which required attention from healthcare providers), our findings enabled us to understand the ways in which healthcare delivery could be better tailored to survivors’ needs. (3) Determining the knowledge tool/product With the knowledge inquiry and the knowledge synthesis completed, it became apparent to us that healthcare providers who wanted to tailor sexual health care resources and interventions might benefit from the insights shared by the patient partners to inform future tools. As such, our objective was an end-of-grant knowledge translation goal to develop a toolkit encompassing the many recommendations and realities shared by our patient partners, that could be applied across various settings. This toolkit is intended to be a decision aid for individuals wanting to create a sexual health intervention/resource for gynecological cancer survivors. However, it is also a general guide for areas of consideration regarding the peripheral impacts of cancer treatment on the person and how this, in turn, informs sexuality after cancer. Whether these gaps in knowledge be used in 95 practice, or for the development of a resource for survivors, they remain important starting points for a better understanding of sexual health after cancer. (4) Identifying the problem, determining the know/do gap, reviewing and selecting the relevant knowledge Little research has been done regarding tailoring interventions for gynecological cancer survivors and their sexual health needs following cancer treatments. As previously mentioned, to our knowledge, only one other research team has evaluated survivors on a sexual health tool (Gorman et al., 2022). However, despite the little research available, we have noticed similar recommendations from survivors in the study by Gorman and colleagues and our own patient partner engagement. This leads us to conclude that making these learnings available in a KT toolkit may be beneficial to the advancement of interventions targeting sexual health after cancer. Indeed, in both cases, people with first-hand experience regarding such issues have suggested similar and complimentary improvements and considerations regarding adaptations of intervention to treat sexual difficulties after gynecological cancer treatments. Furthermore, a review of the literature regarding the gaps in sexual health care after gynecological cancer demonstrates clear gaps in care: physicians rarely broach such topics due to a lack of time, information and resources, yet survivors yearn for such information (Lindau et al., 2007; Sekse et al., 2015). Therefore, our goal was to address this gap in care when it comes to fulfilling the needs of gynecological cancer survivors for more, better, and tailored information regarding their sexual health. This approach was also supported in a commentary regarding the implications for clinical care and research about cancer survivorship care (Nekhlyudov et al., 2019). Specifically, this commentary pointed to the priority of 96 guiding and developing “innovative health information technologies” and that “attention should be placed on dissemination and scalability”. (Nekhlyudov et al., 2019, p. 1127). Another important aspect to consider regarding the development of such survivorship care tools is the multidisciplinary approach involving different stakeholders which should be employed (Jansen et al., 2015; Van Gemert-Pijnen et al., 2011). Our work involved end users (gynecological cancer survivors), clinicians (clinical psychologists specialized in sex therapy) and gynecological oncologists (who directly provide cancer care) who jointly provided their respective knowledge for the creation of a tailored intervention. The outcome, a tangible KT tool highlighting the key findings from this work, will be an asset to anyone working to develop supportive interventions for survivors. (5) Adapting the knowledge to the healthcare context Lack of time for adequate conversations between patients and providers (Trivers et al., 2013; Wiggins et al., 2007) is one contextual issue that can impact knowledge translation. This is why we believe that adapting interventions or psychoeducational programs aimed at improving sexual difficulties in gynecological cancer survivors is viable, as it removes some of the burden on physicians to delve into the matter adequately with survivors. Simply put, the lack of time within clinical interactions for such topics reinforces the need for outside resources to be provided to survivors. However, with competing time and priority commitments, healthcare providers who want to develop a resource or intervention to help survivors may find it challenging to do so amidst their busy schedules. Hence, those who seek knowledge regarding the best practices for tailored and informed sexual health care delivery after cancer may appreciate having the relevant information imparted in a condensed and straightforward manner. Several studies 97 evaluating the use of KT toolkits in healthcare settings have demonstrated that documents should be brief, simplistic in their wording, and clearly organized, yet the material should also precisely and distinctly state the purpose, rationale, and evidence informing the recommendations for best practices (Barac et al., 2014; Davis et al., 2017; Yamada et al., 2015). A toolkit can overcome the context-specific lack of time that impedes a discussion about sexual health between providers and survivors (Yamada et al., 2015). (6) Assessing barriers and facilitators to knowledge A key aspect of knowledge translation and the planned action cycle is the adaptation of the KT tool to the local context to inform its structure and dissemination. An avenue that is worthwhile to consider regarding informing healthcare providers of new evidence such as what was learned with patient partners is through the lens of continuing medical education. Traditionally, healthcare practitioners from academic institutions have engaged in grand rounds to learn new evidence in the field, though this has been shown to have little impact in the long term. In fact, a study evaluating the effectiveness of grand round lectures has demonstrated that only 40% of the material discussed in such context was recollected within 9 months of the event (Agee et al., 2009). Thus, offering this educational material in a written format rather than orally may not only allow healthcare providers to return to this information as needed, but it would also allow them to quickly grasp the information that is most relevant to their context while ensuring its sustainability through time. (7) Selecting, tailoring and implementing the product While formats that include videos can be more engaging for the end user, the evidence regarding the use of written documents as KT tools overwhelmingly favours brief 98 documents grouping both the evidence and the recommendations for best practices (Barac et al., 2014; Yamada et al., 2015). In a study evaluating what clinics prefer with regards to KT toolkits, the main characteristics for effective implementation involved specifying the audience it was intended for, succinctly representing evidence that is effective, easy to adapt and in various formats (Davis et al., 2017). These are compelling aspects which were partly informed by the fact that users in clinics often have limited time to read through a full toolkit at once, and therefore likely skim the material taking what is most relevant to their situation and disregarding the rest. These recommendations directly inform the guidance we have developed for a toolkit, to be outlined in the next section. Indeed, the sections will be clearly parsed out such that the evidence and rationale which is appreciated by most will be separate from the actual takeaways for the adaptation of resources for survivors. This will ensure that all elements are present for effective improvements in survivorship care as delineated by Barac and colleagues (2014), who emphasized the need to refer to the main evidence behind recommendations, while also creating a toolkit that is functional. Finally, the main takeaways and the source material for this toolkit will be conveyed in a checklist format as a way to allow users to prominently showcase the recommendations for optimal implementation in practice. The next three sections of the knowledge to action framework (monitoring knowledge use, evaluating outcomes, and sustained knowledge use) will not be included in the scope of the present work and should be the focus of future research endeavours. 99 3.5 Content of the KT Toolkit Title: What Survivors Want Medical Professionals to Know about Sexual Health: Guidelines and Considerations for Survivorship Care Description of this toolkit This toolkit is informed by the findings of our research on sexual health after gynecological cancer with survivors as patient partners. Depending on the vision of the resource being constructed for survivors, some information may be more relevant than others. It is possible that some of these recommendations may not be useful depending on the media type (digital, hard copy) of the product. In all cases, we recommend that allied healthcare professionals who strive to improve the information around sexual health and well-being after cancer and who aim to develop supportive and healing programs for survivors consider the guiding principles showcased in the following toolkit. Each section will first introduce the shortfalls regarding sexual health and survivorship care, before showcasing patient partners’ relevant experience with such matters as direct evidence of the description of each key challenge and finally ending with simple and concise recommendations and considerations in a checklist form to clearly emphasize the ameliorations that ought to be incorporated in cancer care. How insights into survivors’ experiences can inform a better approach to survivorship care It is imperative to situate the context in which the recommendations encompassed in this toolkit emerged. These considerations stem from patient partners’ personal stories. Hence, each point was thoughtfully curated based on the large amount of primary data collected through collaborative work with survivors who shared their first-hand knowledge about their experience with cancer, sexuality, the medical system, and a digital health tool aimed at treating sexual 100 difficulties. Each reflection stems from their perspective as survivors and targets an area that requires particular attention as far as sexual health after cancer and overall survivorship care is concerned. SECTION 1 This section will discuss reasons why a sexual health program for survivors may be warranted given the systemic barriers hindering effective supportive care. Then, a list of important reflections and considerations to ponder before moving forward with the creation of a sexual health resource for survivors will be presented to those who intend to pursue such efforts. Systemic barriers to care that need addressing: what patients want you to know It is instrumental to understand the key areas which have failed survivors and left them in need of tailored supportive care regarding their sexual well-being. Specifically, we discuss how the medical system as well as sociocultural norms minimize the importance of sexual health and interact to perpetuate negative consequences on survivors’ experience with gynecological cancer. Below are some areas which may cause distress and suffering for survivors, often unintentionally. 1. Lack of information: The literature has repeatedly emphasized the need for more information regarding the sexual consequences of gynecological cancer and this was supported by the patient partners in the eSense-Cancer adaptation work which inspired this toolkit (de Rooij et al., 2018; Hodgkinson et al., 2007; Sanson-Fisher et al., 2000; Trivers et al., 2013). Reasons for this lack of information gathering and sharing stems mainly from stigma and embarrassment on the medical professionals’ part, lack of knowledge regarding the sexual impacts of cancer and its treatment, and limited time to properly discuss such concerns. Furthermore, the lack of information imparted to 101 survivors leaves them feeling isolated in their experience when in reality, a majority of gynecological cancer survivors experience sexual difficulties as a result of cancer and its treatments (Brotto et al., 2010). 2. Effects of limited time on patients: Based on patient partners’ reports, the Canadian medical system is organized in such a way that specialists are overburdened and the little time awarded with clinicians is spent discussing treatments and outcomes. Indeed, physicians face extreme time pressure to provide therapeutic cancer care for existing patients and must expedite the evaluation of newly diagnosed patients, leaving no time to address psychosocial concerns such as sexual difficulties after treatment. Survivors experience a great sense of guilt for taking additional time to discuss matters related to their sexual health. Some may also experience a sense of gratitude to even have a specialist see them, regardless of whether their needs are addressed, because of the failures in the system such as lack of doctors, long wait times, etc. 3. Finding resources and the related financial barriers: As a result of the failure to educate patients about the sexual health issues that may arise after cancer, survivors are left to find resources that may help them address the difficulties they experience with sex. These resources may be pelvic floor physiotherapists, or registered psychologists and registered clinical counsellors who practice sex therapy. However, the financial burden imposed on survivors who must often bear to cover the costs associated with these allied healthcare providers poses a significant impediment to their efforts to seek care. Many survivors also suffer from the loss of income during treatment which can extend beyond this phase of the cancer journey. Thus, the hourly rate of such specialized services can pose an added economic burden on survivors and their families. 102 4. Language and its impact: Besides these shortcomings, our patient partners raised a significant matter concerning the language used in medicine and the impact it has on their experience of cancer. Indeed, medical professionals may inadvertently frame the cancer experience in a negative light by using language which ‘problematizes’ the survivors’ condition. Examples given by the patient partners include “your port failed,” “you have bad veins,” and “you are resistant to treatment” all of which serve to reduce the individual to a problem. Similarly, to speak of sexual concerns as ‘dysfunctions’ – albeit clear in medical communities as ‘not functioning normally or properly’ – further frames the experience of cancer and its effects on the person’s well-being as negative. The use of such jargon can be very damaging to survivors whose emotional and psychological well-being is greatly affected during cancer. Many experience shame as a result of such stigmatizing language. 5. Sexual stigma: In a similar vein, it is important to recognize the culture that surrounds sex and sexual organs. Unfortunately, the topic remains taboo, and survivors may experience shame and embarrassment simply for their cancer being located in their sexual organs. Indeed, there remains a stigma associated with areas of the body such as the vulva and the vagina which inhibit folks to speak openly about the changes that they observe due to cancer. Table 4 Excerpts from survivors on systemic barriers Survivors’ stories “I find the word ‘problem’ to be too offensive, almost shaming. I have a problem – let’s turn it into an opportunity. So often as survivors, we hear unintentional negative language from the medical community: You have bad veins. Your port failed. You are resistant. Etc. Gynecological cancer survivors in our culture feel a lot of unconscious shame simply because our cancer involves sexual organs. We need to be particularly mindful of this unintentional shaming when we are talking with women survivors of gynecological cancers about sexual dysfunction. Could we reframe the dysfunction part and move it into a positive framework? Sexual rehabilitation? Sexual freedom and exploration?” 103 Survivors’ stories “You’re lucky to get 10 min, and you really want that focused on your treatment plan: your test, your scans, your medications, or whatnot. To even delve into the subject of sexual dysfunction or intimacy problems… They don’t have the time, nor the resources, most of them, to even get into that with you. And here, many women I know are seeking it out on their own through pelvic physiotherapy and things like that which is great after the fact. But the problem is, it’s costly, and if you don’t have coverage for it, a lot of women can’t afford it. It’s like $80 an hour or something. So, I think, as we’re picking up the pieces after treatment, these are the things we start to address: the sexual problems and intimacy issues. And oncologists really, for the most part, I think, probably don’t have the time or inclination. Their job is to deal with the cancer and the treatment and unfortunately, these are the side effects that come out of that, but they don’t have time to address that.” About a year ago, after a rather exciting afternoon, I started to have vaginal bleeding. I contacted the nurse practitioner on the oncologist’s healthcare team, and she called me back within the 4-hour timeframe. I explained what was going on, and it certainly wasn't– I didn't need to wear a pad or anything like that– but I was very concerned. She was very reassuring, and she said ‘Oh, yes, the vaginal wall is very thin… as you get older, and you haven't been on hormone replacement therapy in your life… you’re, you know, x age now’ She said ‘I'm sure everything is fine. You don't need to worry.’ She was very reassuring but the comment that stuck with me was ‘Oh! You're having sex?’ It just blew me away because I thought: honestly, you work with women all day long. Has this never ever come up in any of your clinical meetings with your team? I was shocked.” “I don’t think the medical [world] does a good job of treating or seeing the whole person. I think it's rare that you have a medical provider see the whole person. I think they think, in silos. When you connect with your oncologist, and they're seeing you as a whole person like when my doctors responded to questions about adoption or invited me to make these comments about sex, I really felt seen. And that's one thing as patient partners, we can say. This experience is about so much more than showing up for chemo and surgery and knowing that I can get physiotherapy after surgery for scar tissue. They never even talked about that, never mind pelvic health. ‘What? You mean you can have pelvic health?’” Contextual considerations for the creation and delivery of a sexual health care resource. q Designate a specific allied healthcare professional and member of the personnel in the clinic (such as a nurse or social worker for example) in charge of content development who may also be a resource person with knowledge of issues related to sex after cancer. q Consider the webspace required to house psychoeducational material if developing a digital health. q Determine who will be in charge of any programing and technical support necessary should the program be online. q Establish plans to update the material as needed. q Collect feedback regarding the tool and plan how to track recommendations and changes. q Use destigmatizing language and vocabulary around the topic of sex. 104 q Offer resources to all patients on an opt-out basis to ensure all survivors receive appropriate care. q Reassure survivors that their concerns are just as important as other physical and psychological consequences of cancer. q Normalize the fact that most survivors have sexual concerns after cancer. Let patients know that they are not alone. q Remain up to date on the various distressing consequences of cancer on sexuality and reflect this within any tool to be created. q Notice the language used. Strive to use inclusive and non-shaming expressions and jargon to avoid framing survivors’ experiences in a negative light. q Consider the financial aspect of resources: who bears the cost? If creating a treatment or resource: can the cost be footed by a clinic, or through a grant, for example? SECTION 2 This section will provide background information regarding the challenges around sex and intimacy after cancer reported by patient partners who have lived experiences on the matter. This information may or may not be explicitly conveyed in an intervention to address sexual concerns in gynecological cancer survivors, but it helps understand the repercussions that cancer has on the person and their sexual well-being. What patients want you to know about sex after cancer There is much research on the actual sexual difficulties (like distress, dyspareunia, low desire and arousal, lack of lubrication, and other sexual symptoms) experienced by survivors of gynecological cancer (Abbott-Anderson & Kwekkeboom, 2012; Lin et al., 2022; Ospina Serrano, 2023). However, survivors’ experiences with sexual concerns expand beyond these 105 issues and are informed by various other aspects of life which contribute to and help maintain these sexual difficulties. Below are some particularities regarding survivors’ experiences that were raised in our patient partner engagement which not only help inform the reality around sex after cancer but also ought to be acknowledged or implicitly addressed in any resource or tool that aims to treat sexual difficulties after cancer. 1. Sex as a shifting priority: A fundamental attribute regarding sex after cancer, especially in ovarian cancer survivors, regards its priority in survivors’ daily lives. Sexual well-being after gynecological cancer is reliably evaluated as a high priority and an important factor for the overall quality of life of survivors. However, it is critical to note that a consistent theme raised by our patient partners was that sex tends to become a low to non-existent priority depending on the stage of the cancer journey in which they find themselves. Many expressed that when a survivor is in the midst of treatment, there are too many side effects that leave them too weak to consider engaging in any kind of sexual activity. Even once active treatment has ended, long-term effects can hinder one’s interest and willingness to have sex. Furthermore, these enduring sequelae can cause survivors to have little motivation or energy to face sexual difficulties and this can be paired with a significant sense of overwhelm causing additional distress. Hence, it is often only once one has completed treatment and is well in remission that thoughts about resuming sexual activity resurface. 2. Societal expectations of women in the family: While not all gynecological cancer survivors identify as women, most do, and the gendered expectations of women in society do cause additional pressures on survivors. In fact, patient partners expressed feeling pressured to care for their family members, such as their children, despite the toll 106 that cancer has on their bodies. This expectation of women as homemakers puts additional strain on survivors who may feel a sense of guilt and selfishness when prioritizing themselves over their family during the cancer journey. Furthermore, the exhaustion associated with caring for the home and the family while simultaneously recovering from cancer and its treatments drains any energy survivors may have which leaves little energy for their sexual lives. Hence, sex remains a low priority when survivors succumb to this sense of responsibility and the pressures to uphold a home and family rather than focusing on themselves and prioritizing their needs. Overall, cancer is a family disease, and it impacts the entire family in ways which ultimately leave survivors feeling guilty and stressed about managing the many expectations placed on them. 3. Societal expectations of women as partners: Women with gynecological cancer often feel pressured to meet the “unmet” sexual needs of their partner despite having minimal interest in sex. Of note, it is their perception of a partner’s needs not being met whereas, in reality, some partners may be very understanding and receptive to a hiatus of sexual activity following cancer. However, this sense of obligation felt by women may be experienced despite the partner never demanding sex. Nonetheless, this may lead some survivors to push through any pain or lack of desire and arousal to engage in lacklustre sexual intercourse to satisfy their partner’s desire. In such cases, the lack of proper communication and undesirable sexual experiences may further perpetuate negative thoughts about sex and hinder the well-being of survivors. 4. Self-esteem and body image: A major deterrent to sexual activity in survivors is their perception of themselves and their bodies following cancer. Many express feelings of 107 disgust and dismay at the changes that occurred following surgery, radiation and chemotherapy. Some common changes include weight fluctuations, major scarring and loss of hair. Consequently, many will prefer to avoid engaging in sexual contact with partners in an attempt to hide their bodies. This can be attributed in part to the societal expectations placed on women to be desirable. Moreover, some also describe a sense of distrust towards their body as it no longer seems to ‘do what it is supposed to do.’ This perceived failure often arises from the comparison of their abilities pre- and post-cancer. In the context of sexuality, many describe not being able to orgasm or feel pleasure as they did before treatments. This results in negative feelings towards themselves and further dissuades them from leaning into sexual activity with or without a partner. Fortunately, some survivors develop a new sense of acceptance after cancer and a renewed appreciation for their body after everything it has gone through. That said, this growth can take time, and not all survivors experience this sense of pride before they are well into remission. 5. Fears and anxiety: Cancer causes many fears and anxieties to develop in survivors. These cover a broad category of worries and may be all-encompassing. Some of this anxiety can be specific to cancer such as thoughts of death, which causes distress in survivors and halts any desire for sex. Conversely, fears specifically related to sex may also inhibit any interest in sex. For example, survivors will often fear that their partners will not find them attractive since cancer treatments lead to many physical changes to their bodies. Some may also fear the pain that is frequently experienced with penetration. Others describe fears related to sex causing cancer to reoccur. In all cases, it becomes difficult to foster sexual desire and a proclivity for sexual activity. 108 6. Poor understanding of sex after cancer: The lack of information and education about sex after cancer gives rise to erroneous beliefs about the impacts of sex and cancer which ought to be debunked for the well-being of survivors. Indeed, myths regarding sex after cancer are prevalent in this population and they mostly materialize as fearful thoughts that leave survivors of gynecological cancer worried to engage in sexual activity. For example, this may include the belief that sex can cause inflammation or irritation which can subsequently instigate a recurrence or a worsening of the cancer. Alternatively, some may have reservations about sex, fearing that cancer can be ‘transmitted’ through sexual contact or that sexually transmitted infections may be more likely because of sex. All of these misconceptions ultimately stem from a general misunderstanding of the biology of sex and cancer, which ultimately leads survivors to experience additional anxiety beyond the cancer thoughts that tend to plague their minds. 7. Navigating intimate relationships after cancer: A common yet little-reported effect of cancer relates to relationship breakdowns. Some partners may be very empathetic, caring and supportive towards their loved one with gynecological cancer, but others sometimes withdraw due to overwhelming emotions and pressures as caretakers. As a matter of fact, patient partners have reported having to navigate partnered to solo sexual activity because there was no longer an intimate relationship between them and their partners as a result of cancer. This emotional chasm can translate into interruptions in partnered sexual relationships, and this reality is seldom discussed as an effect of cancer on sexuality. 8. Rethinking sex and intimacy building: Another central piece regarding sex after cancer concerns the idea of intimacy. Through discussions with cancer survivors, it’s clear that the idea of sex as penetrative sexual intercourse is tied to difficulties, whether they be 109 physical or psychological. Hence, rethinking what sexuality consists of can alleviate some of the pressures experienced by survivors. Indeed, for some who may believe that sex must include penetrative intercourse as prescribed by heterosexual norms, it can be relieving to learn that sex can be more than the physical act of penetration. Accordingly, patient partners voiced the idea of moving away from the focus of sex as a physical act toward the embodiment of intimacy as an alternative for affection and closeness in relationships after cancer. To build on this point, survivors often struggle with arousal as well as satisfying and pleasurable sexual intercourse and the pain and difficulties with sexual function can perpetuate negative feelings towards this experience. Hence, survivors of gynecological cancer tend to yearn for intimate moments shared between partners instead of engaging in sex. This can include cuddling, kissing, gently holding each other, and holding space for meaningful conversation as demonstrations of one’s affection towards the other partner. 9. Improved, honest communication: Finally, patient partners highlight the need for better and more honest communication with their partners. The lack of open communication often results from fears, embarrassment and shame, but it is clear that by being honest with partners and sharing what worries or concerns them, survivors can be their authentic selves and together with their partner, find a mutual understanding for greater sexual well-being. Any apprehensions regarding the physical act of sex, or any reservations towards their body, when clearly communicated with partners, can be reduced. In addition, discussing matters such as intimacy needs and appropriate levels of pleasurable touch can also result in less distress and more satisfaction in relationships, however many survivors are left to navigate these discussions on their own without much guidance as to 110 how to approach such sensitive topics, especially when partners can be apathetic to the situation as described above. Table 5 Excerpts from survivors about sex after cancer Survivors’ stories “I’m not sure where to address this but here goes...a cancer diagnosis changes everything, including our priorities. Sexuality may not be on the radar screen once diagnosed. Staying alive becomes the priority. And yet as women, there’s an element of guilt. Are we continuing to take care of our families? Friends? Partners? Are we satisfying them sexually when we’re at our lowest ebb? How do we address this guilt? Thinking of someone else and satisfying someone else (other than ourselves) is difficult at best and impossible at times.” “There is a lack of any examples related to cancer patients. […] Example: ‘Sex is painful after my cancer surgery; I’ll never find a comfortable position,’ ‘My partner will leave me because my breasts had to be removed’ or ‘My partner will never be turned on with all these surgery scars.’ Please change examples to better reflect the thoughts/fears that cancer patients are dealing with. It will be so much more relatable.” “I think most of us know our bodies have changed pretty much from day one. The second [one has] surgery or treatment, our bodies are changing, and they continue to change going forward. It wouldn’t hurt to recognize or acknowledge that we know our bodies have changed and a lot of us are grieving that and learning to adapt to those changes. Like [we] had said you know ‘Does this still work properly? Is it still doing what it’s supposed to do? Can I get it to do what I it used to do?’ So acknowledging that might help some women feel better about themselves; just that you recognize and acknowledge that treatments of cancer certainly affect your body.” “Certainly, for me, I worry that because of my scarring and things like that, sex is painful. So, I worry like ‘If I’m forcing this or if I’m doing this, am I causing tears? Am I causing inflammation? Is just the physical act of sex causing pelvic inflammation or tenderness where I have adhesions?’ And I think ‘geez, could that really get things going again? Could that inflame things? Could that possibly cause a recurrence?’ So, if I was in the moment, and just about to have sex, and that pops in my mind… It certainly would take everything. It would turn everything about face.” “It seems to be a very common occurrence that, in a partnered relationship, whether married or just dating, either the person is incredibly supportive, always there, and always attentive, and they become your caretaker, or the opposite. The person can’t handle it, and they become distant; they become incredibly unsupportive, and it leads to a lot of relationship breakdowns. It seems to be there’s less middle ground.” “The relationship [between] my husband and me just took a complete nosedive when I got sick because he just couldn’t be there, in any respect, so he has thrown himself into work. Now we’re kind of like 2 ships passing in the wind. We don’t have an intimate relationship anymore.” “Intimacy can be what we crave when we find ourselves wanting sex; or, inversely, when we’re wanting sex and unable to have it. We might find that simple intimacy satisfies that need and desire. I was especially relieved when, during cancer treatments and the acute adjustment phase, my therapist explained that simply cuddling with my partner and enjoying physical and emotional intimacy could be as good as actual sex. A discussion about beliefs about sex could include whether we believe other forms of intimacy can be as good as sex.” “A lot of our focus in this whole sexual era is about being intimate and opening conversations and building a little bit better of a relationship; addressing that with some people when there are some challenges. It might be really great [to have] an example of saying to the partner ‘I know you don’t really like talking about cancer. It makes you anxious and fearful, so we won’t talk about that, but let’s just talk about intimacy.’ Somehow addressing that – because I think it is very common with us – that there are relationship problems when you enter the cancer world.” 111 Acknowledging key tenets of sexuality after cancer in a tool addressed for gynecological cancer survivors. q Discuss the various stages of cancer and how it affects survivors’ priorities, and especially their interest in sex. q If self-esteem issues and body changes that arise due to cancer are to be addressed, normalize and encourage looking at themselves in a neutral way rather than a negative or overly positive one; this is often well regarded by survivors. q Encourage and support a sense of acceptance in survivors, and model what growth may look like through examples. Avoid taking a toxic positivity standpoint as it can be overwhelming for survivors who are very grounded in reality. q Incorporate factual information regarding sex and cancer and deconstruct common myths and false beliefs that may be held by survivors. This can greatly reduce anxieties and help remove some fears regarding sexual activity. q Include information about relationships, how they may be impacted after cancer and the effects this has on sexual activity. There is more to the experience of sex after cancer than the concrete physical and psychological difficulties. Because of perceived obligations and societal pressures towards the family as a whole and their partners, survivors may be unable to partake in a pleasurable and satisfying sex life. q Offer alternatives to sex which may provide relief and connection between partners. Being intimate with a partner does not require sexual activity, and informing survivors of the different forms of intimacy may offer relief as they navigate a different sexuality after cancer. 112 q Highlight the importance of communication with partners. Open discussions around fears, pain, and emotions amongst other topics can not only foster a sense of intimacy, but it can also allow survivors and their partners to work towards more satisfying and enjoyable sexual activity. SECTION 3 This section approaches the goal of tailoring resources and interventions from a different lens – which is the need for any developed intervention to be accessible. Specifically, this section discusses how to tailor a tool to be inclusive of their cognitive, physical, and psychological limitations. Present the material in an accessible way Patients are left with many physical, psychological, and cognitive consequences of treatment. These may impact participants’ ability to undertake a program aimed at treating sexual difficulties of considerable length and with substantial material. Our patient partners have shared valuable information on their experience reviewing an online therapy platform and how it may impact someone’s ability to work through the modules, the activities and the homework included throughout. Below are some concerns that were brought up and the ways in which the material can be better adapted to their needs. 1. Cognitive limitations: a) Brain fog Brain fog is a term used to describe certain long-term symptoms commonly experienced by patients as a result of chemotherapy. It is described a difficulty concentrating and thinking clearly. Some would describe it as feeling scatterbrained or not being as mentally “sharp.” This can be translated as having difficulty remembering things or 113 having trouble finishing tasks and/or concentrating. Additionally, this cognitive limitation may leave survivors feeling frustrated. In the context of a digital health tool, this can impact a survivor’s ability to work through it, read all the material, and complete any activity or homework, especially when the text is quite dense and difficult to read. b) Fatigue Along the same lines as the brain fog, some survivors may experience a great deal of mental fatigue. This is different from physical exhaustion wherein the body is tired. It is rather the effects of brain fog requiring them to put additional effort when concentrating, and the impact of the constant cancer thoughts and fears which afflict some survivors daily (more on that below). Consequently, allocating additional time for the completion of a program aimed at treating sexual difficulties in this population may alleviate some of the mental and cognitive burden as well as any negative emotions associated with difficulties getting through the material. 2. Physical limitations: a) Neuropathy Neuropathy which is the loss of sensation, numbness and pain experienced because of nerve damage, is common in survivors. Any cancer treatment can leave survivors with chronic pain or numbness, and even no sensation at all in certain parts of the body. This may impact one’s ability to go through an online resource in many ways, including difficulties with navigating various tabs. Indeed, some may experience high levels of pain in their hands, and this can be exacerbated when using a mouse over a long period. Additionally, the many tabs and drop-downs that may be clicked on can be painful to 114 some. On a different note, some participants may be reluctant to engage in certain activities which require touch because of pain, or fear of pain. b) Weakness and exhaustion Survivors may experience weakness and exhaustion because of the demands that treatment put on their bodies. Hence, taking part in any extenuating activities may prove to be difficult for survivors at times. c) Visual difficulties Our patient partners also highlighted issues regarding problematic colours used in a digital health tool. Indeed, they shared that chemotherapy often affects individuals’ vision and that it may be difficult to read low-contrast text. Further, it might be strenuous to read extensive texts written in small fonts. 3. Psychological limitations: a) Anxiety and cancer thoughts/fears Anxiety was discussed by patient partners at great lengths because of how prevalent it is in survivors’ day-to-day lives. Indeed, being diagnosed with cancer comes as a shock and leaves many patients questioning and worrying about the future. Cancer thoughts, as the patient partners put it, are the recurring thoughts and fears that afflict them. Some examples are that cancer might come back, or that if they do x, it might make cancer worse, or thoughts about dying because of cancer. These are often ruminated and tend to come up at night, keeping survivors awake, unable to cease them. Moreover, the presence of cancer thoughts and fears can be highly disruptive to survivors’ lives. Activities and tasks may become difficult to complete without feeling this constant anxiety. Similarly, any resource or tool to help with sexual health after cancer should recognize the 115 pervasiveness of cancer fears and how they may hinder proper focus on psychoeducational material. b) Trauma response and sensitive content Finally, undergoing extensive and aggressive medical treatments to eliminate cancer has serious impacts on patients which can be qualified as traumatic events. The experience of surgeries, radiation and chemotherapy and the multitude of consequences can lead to trauma. Our patient partners highlighted many instances where reading and being prompted to think back about the source of their sexual issues caused them feelings of overwhelm and avoidance. Thus, it is likely that the nature of participants’ sexual issues, if linked to cancer and its treatments, cause them to fall into a trauma response-like situation. Incidentally, participants may not associate their genitals with sexuality and sexual pleasure because of the medicalization of these areas that they experienced during treatment. This is another consequence that our patient partners emphasized which may impact one’s attitude when working through a sexual health tool. Table 6 Excerpts from survivors on accessibility Survivors’ stories “I think embedded videos always break up some of the dryness of lots of text. They’re a little more exciting. I do think a lot of us struggle with that brain fog and I think when you do get these big, long pages you start skimming, and you’re not really absorbing. You might miss some really crucial information because your brain’s just like ‘Okay, let me get to the end.’ So videos kind of stop that. Even having like – if you have a big, long page of text – have a little button at the bottom where [it says] ‘prefer to listen to this? Click here.’ And there’s a little audio file that maybe reads [the text]. Maybe that’s an alternate way to help get [the information] across.” “The chemotherapy left me with many side effects from the beginning. I have severe chemo-induced neuropathy to both my hands and both my lower legs from the knees down. I have pain in both hands and from mid-calf to toes bilaterally. The pain is 24/7 and many trials of medication have not worked. Living in pain every day has taken over my life and eliminated any interest in sex. The chemo side effects also left me with chemo brain fog and made me lose that relaxed person I was, I am frustrated all the time that I cannot function at the level I did before.” “For individuals that have high levels of pain, should a notation be added that references doing these exercises around a person’s medication regimen? In my personal experience, I would have to take my pain medication and be in a state where I could focus on anything but pain.” 116 Survivors’ stories “While the section on mindful stretching suggests that you will be in a standing position, I feel that these exercises could also be done from a sitting position, with some variations to the exercises. And as you say, if you have physical limitations or wish to skip over certain exercises, that’s OK as well.” “A very common side effect of chemo [is] cataracts and cataracts reduce the amount of light that gets into your eye, which means that you need a crisper contrast, so black on white, black on yellow. Yellow text on black is hard. It’s harder to read light text on dark backgrounds. So yeah, there needs to be that crispness. I haven’t tested it, but if there’s the capacity in within the program to enlarge the font; that is quite helpful too. Yeah, the vision impact from chemo is significant and very common.” “It’s very difficult to think about anything other than the diagnosis. What I mean is that while I still walk the dog, shop for groceries, cook meals, look after my house, etc., cancer rarely leaves my mind. And it’s exhausting. It’s also exhausting to try and find something else to think about because I can’t. Distractions are good but they are only distractions and before I know it, cancer is back at the front of my brain.” “As cancer is almost always on the mind of women experiencing it, I would love to see something about ‘parking cancer worries at the door’ when beginning these activities. It would be a nice reminder to ask women to try and separate their cancer fears when participating in the sequences.” “Cancer ‘gets in your head’ and it’s often impossible to shake those dark thoughts away. Trying to resurrect your sex life when your focus is on ‘will I live? how long will I live?’ Physically one may be too fatigued to think about sex and often ‘spent’ emotionally.” “I think acknowledging the fact that women who’ve dealt with cancer have been through traumatic times and events and most of us face anxiety related to that each and every day [is important]. It might be nice to write something about trying to set aside current fears about cancer itself and focus on the fears and anxieties related to these sexual problems instead. [..] Something like ‘we understand that a cancer diagnosis brings much anxiety and worries to your life, but let’s look beyond that to the anxieties of your sexual health.’” “Some people just may not be ready to deal with some of these topics. They may have to close this and focus on healing, and they may never come back. There’s a risk of really opening up some scars.” Considerations for healthcare providers who develop tools to inform and treat sexual health in survivors, whatever the format may be. q Consider the necessary special accommodations depending on the type and format of the tool under development. q Include reminders throughout the materials for the survivors to take things at their own pace so that they do not feel overloaded with information q Allocate more time for survivors to get through dense material, if this is a timed intervention. 117 q Normalize taking breaks and returning to any material at another time to alleviate some side effects like brain fog, fatigue, pain, and other physical strain. This may also greatly improve survivors’ motivation to keep up with a psychoeducational program or resource. q Suggest scheduling any reading or activities in their calendar with a notification. This can serve as a reminder for survivors of this priority, should they be forgetful due to brain fog. q Consider incorporating alternative media as allowing survivors to watch an informational video or at least listen to an audio version of the material, which might help alleviate some of the cognitive load that is required when reading. q Offer an accessibility feature that reads written material on a page at the press of a button as it may relieve survivors from any heavy reading required. q Remind survivors to adapt to their level of comfort and ease to complete a digital health tool should they have difficulties because of pain, weakness, or exhaustion. This can alleviate some pressure. q Inform survivors that they can complete any module slowly if they need to and that breaks are encouraged. q Encourage participants to undertake suggested activities in any position that is comfortable to them, whether this be standing, sitting, or lying down. q Reduce the number of clicks required for any digital resources to avoid additional pain or strain in the hands. q If developing an online tool, consider using special features like ‘flip cards’ which only require users to hover the mouse above a section to display new information rather than requiring an additional click of the mouse. 118 q Ensure that the background and font colours contrast appropriately such that there are no strain and visibility issues. q Notify survivors that it’s encouraged to put overwhelming and distracting cancer thoughts aside while they focus on their sexual health and well-being. Suggest some tips to ‘let go’ of thoughts such as a reminder that these are simply thoughts, and while the situation can be very stressful, ruminating on it will not do any good. In fact, learning how to acknowledge them, but also put them aside and focus on the task at hand, could bring some relief to the survivor. q Consider the traumatic experience of cancer and navigating the medical system and acknowledge and empathize with their concerns. Suggest resources available to survivors in case they need to speak to others for support. Summary In sum, it is clear that any resource or tool aimed at treating or educating gynecological cancer survivors on sexual health after cancer ought to take into account their experience in order to be effective. Patient partners are instrumental in the understanding of the gaps in survivorship care and their involvement in the adaptation of the digital health tool ‘eSense-Cancer’ served to highlight specific needs that are yet to be addressed regarding their sexual well-being after cancer. That being said, additional considerations regarding the accessibility needs of survivors should also be contemplated when developing any material for this specific population as side effects and other consequences of treatments may present unique challenges. Overall, the suggestions of patient partners can be resumed succinctly: programs aimed at gynecological cancer survivors who experience sexual health difficulties after cancer should strive to empower survivors both through its message and its method. Survivors should not be burdened with 119 another task but rather supported throughout the process of navigating sex after cancer. Whether this be by acknowledging particularities of their experience that are otherwise disregarded, or by adapting the parameters of a tool to accommodate their physical and cognitive needs, survivors should feel validated and understood in order to find their way to a renewed and healthy sexual life. Adapting eSense-Cancer to the realities of gynecological cancer survivors Following the review of the modules within eSense-Cancer by the patient partners and the advisory meetings that were held to discuss the recommended changes in greater detail, I proceeded with the adaptation of the platform. First, this work consisted of categorizing the feedback garnered through our collaborative work with the patient partners (see Appendix B). Upon presenting these categories of adjustments to the co-creators and co-principal investigators of eSense, Drs. Lori Brotto and Kyle Stephenson, I proceeded to suggest realistic edits to the content of the program for both arms (CBT and MBT) while meeting with the co-creators on a weekly basis to present and discuss potential inclusions to eSense-Cancer. This resulted in a large spreadsheet outlining the gaps within the program’s modules and what needed to be addressed based on the previously described categories of improvement for each arm of the program (see Appendix C). With this master document as a guide, I was able to thoroughly edit the entirety of the content in eSense before passing this revised version to the co-creators of the program. The co-authors had a read-through of the new material and, as a group, we further revised and reworked the proposed edits until the team felt that the new additions were complete and thorough, encompassing most of the patient partner’s requests, suggestions, and recommendations. In tandem with this collaborative work on the content of eSense-Cancer, discussions regarding the 120 required changes to the format of the program were held on a weekly basis as well. Considerations for the feasibility of implementing certain tools and changes within the research budget and time frame were made to find a balance between the accessibility needs of gynecological cancer survivors and what is achievable within the project parameters. This collaborative work resulted in a considerably improved online platform which not only addressed many of the concerns raised by our patient partners regarding the material within the treatment but also those related to its accessibility for cancer survivors. 121 Chapter 4: Conclusion 4.1 Personal Reflections The topic of sexual health and well-being in gynecological cancer survivors is one that I have learned to understand thoroughly through this Master’s. Unfortunately, the mounting evidence for its limited acknowledgement in supportive care paired with the lack of information regarding the sexual sequelae of cancer treatments leaves survivors to navigate their difficulties on their own. Having done some research looking for organizations providing support and information to gynecological cancer survivors, I can say that although resources do exist, they can be difficult to access. One can only imagine the barriers experienced by survivors who are seeking help regarding sexual health, relationships, and/or psychological well-being, as they navigate the multitude of side effects that cancer and its treatment have imposed on them. The lack of readily available treatment for sexual difficulties after cancer truly fails survivors who may experience negative feelings about themselves as well as distress. It was only once I started reading the background information on the topic and really immersed myself in this work that I was able to see the potential that a program such as eSense-Cancer could have on a community of individuals who long for tailored care. In fact, working with the patient partners really opened my eyes to the unfortunate realities experienced by most – dare I say all – gynecological cancer survivors. Through our hour-long discussions, I was able to glimpse into their lives and their struggles and these personal accounts really grounded the research I was conducting. Indeed, to witness first-hand the importance of developing a tool such as eSense-Cancer, as well as the value and the relief it could bring to survivors was a constant reminder of the importance of this work. I find myself privileged to have had such intimate contact with the patient partners and cherish our collaborative work. Many comments made by 122 them in our focus group discussions have stayed with me throughout my time in this Master’s, and I must admit that their experiences have influenced my desire to have a direct impact on people in the future. Much research is removed from the realities it can inform, but this engagement with survivors has truly been the highlight – and the driver – of my work, and I hope to have showcased my dedication to their experience and have accurately represented their lived reality to effect positive change in the delivery of cancer survivorship care in the future. Although the actual process of adapting the digital platform of eSense-Cancer was not the main focus of this thesis, this opportunity has been one that I highly valued, as it allowed me to directly implement the wishes of the patient partners into an intervention which promises major advancements in the field of sexual health care after cancer. Having said that, I pondered ways in which our collaboration could have even greater impacts on the field at large. Indeed, despite the extended conversations regarding the improvements to be made to eSense-Cancer to better reflect the experience of gynecological cancer survivors, our patient partners sometimes shared additional thoughts, unrelated to our specific research objectives which were not addressed in the adaptation of the program nor within Chapter 2 of this thesis. These thoughts stayed with me, however, and informed Chapter 3. For example, during one such discussion session, one patient partner commented in passing sharing her excitement at the thought of our collaborative work in improving eSense-Cancer being shared broadly in waiting rooms of cancer centres and clinics, available for all to see. She briefly recounted telling a friend about her involvement in this project and her friend – also a gynecological cancer survivor – eagerly wishing to sign up for a program such as eSense-Cancer. 123 This then inspired a brief discussion about the future of the intervention as a whole, and our patient partner Edith shared valuable insight on the matter: Hopefully, you guys can push the word out and get that advertising out anywhere that cancers are treated, because I think the vast majority of us are dealing with some type of issue like this after the fact. It’s about letting women know this is out there. […] I think a good place to start as well would be like social workers, your therapists, just your regular doctors. Certainly, oncologists. Absolutely. They need to see this because this is their specialty. It’s just the time; the vast majority are not going to have time to address these types of issues. They’re going to refer us to pelvic physiotherapists, or psychologists. All the different ranges of, you know, the next level down. Basically, that’s where they’re going to advise us to go and spend the time to get the help, but certainly, they should know about eSense-Cancer and that it’s available. Aside from the previous conversation around the future of eSense-Cancer, towards the end of one collaborative session, another patient partner expressed her sentiments regarding the vulnerability shown by the group in discussing deeply personal matters. Indeed, patient partners in research tend to share profound and raw accounts of their experience in order to fully encapsulate the reality of survivors, which can be psychologically challenging at times, especially when the topic at hand is of a sensitive nature. I experienced it firsthand when emotions ran high following the disclosure of especially raw stories. During one particularly emotional conversation, our patient partner Dianne articulated her feelings on the matter in the following comment: 124 I’m about to start to cry, and I’ll try not to, but I just want to say we’ve been sharing something very sacred. And [Gillian and Therese], I just want to thank you too and recognize that this is sacred for all of us. I just want you to know that. These words had a lasting impact as I pursued my work on eSense-Cancer, and in admiration of our patient partners’ strength and dedication to a better future for survivors with sexual difficulties, I began thinking about manners in which I could heighten the impact of their contribution to survivorship care beyond our practical work in adapting eSense-Cancer. These comments instilled an idea: to share these findings with a wider population in order to honour the knowledge imparted by our partners beyond the purpose of this sole project. This is how Chapter 3 came to be, and although these efforts are only in the beginning stages, I am more committed than ever to continue to serve this vulnerable population in my future professional and academic endeavours. 4.2 Strengths and Limitations Given the objectives set out for this thesis, one major strength involved engaging an advisory board comprised of ovarian cancer survivors. Indeed, much was learned from the patient partners in this research work, and simply using the available literature to inform the adaption of a digital health intervention such as eSense-Cancer (which is so detailed and precise in its goals and therapeutic approaches) would not have yielded as much insight into the specific adaptions required. Furthermore, implicating patient partners in the review of the material within eSense meant that the recommendations for the improvement of the content and format of the program were specific and targeted to better reflect their experience. This engagement proved to be a strength in the creation of the knowledge translation toolkit as many of the topics broached 125 within the collaborative work sessions were applicable to a wide array of individuals who seek to create resources and interventions for survivors of gynecological cancers. A major limitation of this work, however, is related to the implication of ovarian cancer survivors only. Although the aims of eSense-Cancer were originally to focus on sexual difficulties after ovarian cancer, the scope of the project grew, but our patient advisory board did not reflect diversity in gynecological cancer types. Moreover, our discussion sessions did yield differences in opinions between patient partners at times. Involving more patient partners ranging in type of gynecological malignancies could have provided a better overall understanding of the landscape of sexual difficulties after cancer. Another limitation in this thesis involves the evaluation of the eSense-Cancer adaptation by the patient partners. Indeed, it would have been interesting, should have time permitted, to evaluate the satisfaction of the patient partners with the various modules within eSense before and after its adaptation. This data set could have been informative in the creation of the knowledge translation toolkit and could have proven to be an additional argument for the implementation of specific recommendations. Finally, it would have been maximally relevant to engage patient partners in the creation of the knowledge translation toolkit featured in Chapter 3. Indeed, although it was informed by the collaboration with patient partners, the exact format and inclusions could have benefitted from survivors’ specific insights. 4.3 Conclusion To conclude this thesis, that additional efforts should be taken in cancer care to treat the needs of gynecological cancer survivors as they pertain to sexual health and well-being. I hope that the engagement of patient partners in the adaptation of eSense-Cancer will prove to have been useful as demonstrated in a future feasibility study of the intervention. Indeed, I believe that 126 the tailored approach informed by the lived realities of survivors will resonate with future users of eSense-Cancer and show that it is consistent with this population’s experiences in addition to helping reduce sexual distress and improve sexual well-being. 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The Journal of Sexual Medicine, 17(11), 2208–2219. https://doi.org/10.1016/j.jsxm.2020.07.086 158 Appendix A: Sample of the Iterative Thematic Analysis Process In chronological order, the following images showcase different aspects and iterations of the thought process and the imagery regarding the data which came up through the discussions that were had between the members of the research team. 159 160 161 162 163 164 165 166 167 Appendix B: Adaptation Categories Category Preliminary Codes within the Categories Adaptation Examples Lived experiences Successes Resources Disagreements Formatting Acknowledgements Contradictions Future research considerations Miscellaneous More information on cancer/sexual dysfunction Inclusivity Clarity (text) Vocabulary Intentions Clarity All gynecological cancers Accessibility (functional) Pain sensation Psychological pain Avoidance Abandonment Anxiety Stress Flooded Fear and dread Trauma Abandonment Guilt Shame and embarrassment Anger and resentment Attributional blame Frustration Depressive symptoms Worry Grief Physical pain Sexual stimulation pain Non-sexual stimulation pain Neuropathy Personal sense of failure Systemic failure 168 Treatment side effects Chemo side effects Brain fog Radiation side effects Surgery side effects Iatrogenic menopause Physical limitations Body image and scars Post-traumatic growth Empowerment Self-esteem Self-judgements and negative beliefs Transition Shifting priorities Cancer thoughts Post-traumatic growth Adjacent challenges to cancer Recurrence Relationships Relationship failure Relationship fears Unpartnered sex Partnered sex Navigating partnered to solo sex Intimacy and touch Communication Sexual symptoms Sexual symptoms Causes of sexual symptoms Remedies for sexual problems Aggravating cancer Fatigue Sleep disturbances and insomnia Fatigue and exhaustion 169 Appendix C: Adaptation Review and Recommendations A similar table was created for the review and adaptation of the MBT arm. However, for the purpose of exemplifying my methodology, only the table for the CBT arm is included here. Module Page Sub-section (if applicable) Patient Partner Comments Category/ies Intro What is eSense? Difficult first step Add discussion on body betrayal, acknowledging cancer, having a healthier appreciation for one's body Body image and scars, transition Make the goals of eSense clearer Inclusivity Add a more general connection to gynecologic cancers in the intro - consider making a new tab perhaps Inclusivity, treatment side effects, transition Format of eSense Including your partner Consider adding something about what to do/how to take eSense as someone who doesn't have a partner to do the exercises with; how can one navigate the program solo? (The video is also very partner focused) Relationships Expectation for your participation Maybe acknowledge that for some, sex may not be a priority as your whole world shifts when you're diagnosed Transition Perhaps the timing that it takes to do eSense and the cognitive load it requires should be discussed here because fatigue and other barriers to getting started related to the cancer experience should be acknowledged Fatigue, treatment side effects, adaptation Additional comments It might be a good idea to acknowledge the vocabulary used in eSense and "sting words" that may be used throughout Inclusivity In the intro, we should acknowledge and be sensitive to the demands of treatment for those taking the program Transition, treatment side effects 1 Welcome Goals of the program Under "why do this?" consider sharing some cancer-related issues and benefits of eSense Inclusivity, treatment side effect, sexual symptoms, transition Under "gain a better understanding of your sexual problems…" consider mentioning gynecologic cancer Treatment side effects, Inclusivity 170 The term "women" starts being used; change the vocabulary throughout Inclusivity A lot of vocabulary needs to be adapted (e.g., sexual “problem”); let's move away from the negative connotation of words and frame it in a more positive light Inclusivity Patient partners were curious as to what kind of activities they would be doing and suggested that this be touched upon early in the program to give an overview Inclusivity, adaptation Patient partners share that in general, there is a lack of cancer effects on sexual health from the get-go; it's very broad Treatment side effects, sexual symptoms, pain sensation What sex means to you It would be important to mention the transition that happens with diagnosis and treatment, as well as how priorities may very well shift following cancer Transition Perhaps add a question in the exercise specifically about how cancer changed their relationship with sex Relationship, sexual symptoms Change words such as "dysfunction" Inclusivity Three women and their stories Adapt all three characters Adaptation, example Outline some common symptoms that the patient partners have described throughout the cases Sexual symptoms, pain sensation How common are sexual problems? Consider adding statistics that reflect the experience of gynecologic cancer patients Adaptation, inclusivity Perhaps add a note on why sexual concerns are so common for this population Treatment side effects, sexual symptoms, pain sensation Overall, our patient partners wanted to know that they are not alone in living through this and having these challenges Inclusivity 171 Causes of sexual problems Consider adding a small section explaining why or how the sexual problems are happening Treatment side effects, sexual symptoms Perhaps explain the treatment side effects and realities of going through diagnosis and treatment and how it can impact one's sexual life Treatment side effects, transition, pain sensation Consider adding examples of stressors that are specific to cancer survivors Adaptation, example Predisposing/precipitating factors PDFs Review the predisposing and precipitating PDF documents to make them more tailored to cancer (such as adding more specific examples on treatments and trauma for example) Adaptation, pain sensation Consider reordering the PDF information to put cancer at the forefront (more tailored) - consider making "cancer" a main heading Adaptation Predisposing factors PDF Add fears and anxieties as well as the trauma from cancer Pain sensation Consider adding information and examples on cancer-related self-judgements (and how they may be different from regular self-judgements) Body image and scars, pain sensation Precipitating factors PDF In social precipitating factors, consider adding how relationships can change and how partners experience the sexual relationship after diagnosis and treatment (here is where one could potentially discuss absent spouses, navigating sex alone despite being in a relationship) Relationships, sexual symptoms Predisposing/precipitating/protective factors tabs Perhaps make this section into videos, with the main cancer topics being discussed and then guide them to the PDFs for further reading on additional factors Adaptation, inclusivity Causes of sexual problems summary A patient partner brought up that the sentence "there is rarely one easily identifiable cause of sexual problems" is not as true for survivors because, for a lot of them, it's quite clear that the cancer treatment is the cause; consider rephrasing this section Adaptation Shelina and the four Ps Adjust Shelina's example based on the adapted character story Adaptation, example 172 Intervention for sexual problems: CBT Add examples of cancer thoughts/fears Adaptation, pain sensation, example Add a paragraph specifically about dealing with something as terrifying as cancer Pain sensation Summary and between-module practice Overall, the module needs more focus and data on gynecological cancer (it's currently too general and broad) Inclusivity, treatment side effects, transition Our patient partners also note that the fonts and background colours need to be reworked because there are accessibility issues (vision-wise) Adaptation, inclusivity 2 Review of module 1 This goes for any review tab in the program, but if major changes occurred in the previous module, it would be important to review the review page in the following module and make sure these changes, if important enough, were captured Adaptation The cognitive model Shelina and the cognitive model Consider making the scenario more specific to cancer-related thoughts Adaptation, pain sensation, example Adapt the beliefs and thoughts to relationship and cancer-related thoughts Relationships, pain sensation Where cognitions fit in our CBT model of sexual problems Under "interpretations of ambiguous information during sex", consider adding pain or other cancer-related realities Pain sensation, treatment side effects, sexual symptoms It might be important to note that arousal may not be the issue so much as pain or lack of lubrication for example Treatment side effects, sexual symptoms, pain sensation Under the "interpretation of your fight or flight system", it may be good to note that pain and stress can cause a fight or flight response Pain sensation Under "judgement about your appearance", it would be good to add a note about self-image after cancer, and body, self-esteem fluctuations and scarring examples Body image and scars 173 The thought record Situations vs. Thoughts vs. Emotions List "fear" as one of the emojis Pain sensation Example thought record: Joanna Streamline this example to reflect the new case example Adaptation, example Consider making the example more related to a cancer thought Adaptation, example A patient partner criticized the "selfish" nature of Joanna's thought Adaptation Summary and between-module practice Make the summary reflect the changes if necessary Adaptation In between-module practice, consider adding possible challenges specifically encountered by survivors Adaptation 3 Review of module 2 Review of between-module practice Question: Are survivors taking eSense because they are distressed about the sexual response or also because they are distressed about changes in sexual functioning and their relationships? Could it not be all of the above? Should we adapt accordingly? Sexual symptoms, pain sensation Cause of unhelpful thoughts Change or add examples that are related to cancer Adaptation, example Learning history Under "a metaphor", consider changing the war analogy to a more relevant cancer example; cancer is often made to be compared to a battle and war so maybe this is not the best example Inclusivity, adaptation, example Putting it all together Shelina's thoughts example should be adapted and flow well with what's changed about her character Adaptation, example Digging down to core beliefs How did I get these core beliefs? Under "take a look at this example", adapt some of the boxes with just a few words on cancer to make it more relevant Adaptation, example Consider making the examples more related to at-home situations, or situations survivors may find themselves in ("Dan pays attention to me in the office" is unrealistic because most will have to stop working during and after treatments) Adaptation, example A patient partner mentioned how it might be useful to consider the change in core beliefs from pre- to post-diagnosis/treatment and how thought patterns are completely shifted. This section might lend itself to this adjustment Transition 174 Why do core beliefs matter Under "cognitive conceptualization", the childhood and early life events picture could be changed; our patient partners mention that this page seems to be more focused on childhood abuse rather than cancer and want cancer and core beliefs to be the focus Adaptation Example: Shelina's core beliefs Make sure the example is in line with Shelina's new story; some patient partners liked the example as is, but another wanted to see a cancer-specific core belief in this example Adaptation, example Biases in thinking Common cognitive biases Consider changing the examples to be more cancer-related; they are currently random, but it would be good to make them more reflective of the experience of people living with cancer Adaptation, example "Should" statements Give examples of cancer "should" statements Adaptation, example Summary and between-module practice Overall, have more examples geared to survivors and fewer general examples Adaptation, example Assess whether you think specific challenges may arise with completing the between-module practice Adaptation 4 Evaluating and challenging your thoughts Try out alternative, balanced thinking and other tabs Add cancer-related thoughts example Adaptation, example On the example about feeling broken because of low desire: this seems to be less of an issue with cancer survivors as their concerns seem to be related to the effects of treatment on sexual functioning and the presence of anxiety and fears Sexual symptoms, pain sensation Consider making the example better reflective of the writing exercise; one of the patient partners was not sure what the exercise would look like Adaptation, example, inclusivity Self check-in Consider adding an encouraging note about their progress as well as a positive affirmation at the end, focusing on hope (framing eSense in a positive light) Inclusivity 175 Reminder of rationale Under the example: "If you predict that not feeling sexual desire/arousal will make your partner leave you…", consider changing the phrasing to "not having sex" because the reality of survivors is less about lack of desire and arousal (according to our patient partners) - although there is a lack of desire in the throes of treatment, once in remission, desire can very much be present, but other factors play a role in why they don't have sex Inclusivity, sexual symptoms Summary and between-module practice See if changes need to be made here according to changes in the module Adaptation Consider adding challenges that survivors may face here as well Adaptation 5 Moving from thoughts to behaviours Thoughts that cause fear and anxiety Shelina's example: consider adapting the reason why she doesn’t want to turn down sex so that it's related to the experience of relationship issues after cancer; i.e., remove "depressive episode" and change it to an event related to cancer or keep depressive episode, but relate it to depression as a result of cancer-related challenges Adaptation, example, relationships Introduction to behavioural experiments Anxiety-related predictions While anxiety can be caused by many things, our patient partners mainly experienced anxiety as a result of the diagnosis and treatments; perhaps acknowledge the trauma of cancer and the related anxieties here Pain sensation Patient partner recommendation: consider letting the participant know to set aside cancer fears and focus on sexual fears for the program ("parking cancer fears at the door") Pain sensation, transition Instruction for conducting behavioural experiments Make specific predictions Shelina's example is fine, but it could be made to be more reflective of one's experience with cancer ("more relatable"); why is she turning down sex? We could try to make the link to the experience of cancer here Adaptation, example Our patient partners want to see real-world examples of women post-cancer treatment Adaptation, example Break up experiments into smaller steps - Joanna's example Adapt Joanna's case example based on the new character story Adaptation, example Throughout the steps with Joanna's example, we're talking about embarrassment, but maybe guilt and shame can also be discussed since they are such big emotions experienced by survivors Pain sensation 176 Problem-solve (be flexible…) eSense-Cancer should emphasize flexibility throughout the program, but it may be especially good to reiterate it here since one's situation can change within an instant if the cancer reoccurs Inclusivity, transition Reminder regarding rationale Note: the word "problem" is used on this tab Inclusivity 6 Note Module 6 is particularly heavy in drop downs; consider removing some (that said, it's something that should be revised throughout the program) Adaptation Introduction to Sensate Focus Common experiences for women with sexual problems In the distraction section, add specific examples of distractions related to the effects of cancer (e.g., fears, scars, hair loss, ruminations about partner thoughts of oneself, weight fluctuation, etc.) Adaptation, example, treatment side effects Information about sensate focus Sequence of sensate focus activities Consider adding a note before starting the exercise about "parking cancer fears at the door"; in other words, setting aside distractions to be in the moment during the activity Relationships, pain sensation 7 Review of module 6 and between-module practice Our patient partners recommended adding content about acceptance of their new body; the self-touch exercises could be for some a re-discovery of the body post-treatment – perhaps this can be integrated into module 6 too Transition Including your partner in sensate focus Including your partner in sensate focus Perhaps make a disclaimer (or instructions) for those who don't have a partner or who do but aren't present for this kind of activity Relationships Ground rules for communication Consider adding a rule: "While cancer is an important discussion and it may arise, it should not be at the forefront of every sentence between partners"; i.e., cancer should not overtake the conversation Relationships Roles: speaker and listener Perhaps adapt the TV example to one that is more relatable Adaptation, example 177 More communication tips Some concerns that were brought up by patient partners and tips they would like to see added to this list concern cancer fears, cancer effects and how it makes them feel; specifically, making sure that the partner understands and remains open-minded/listening to the survivor's feelings and concerns - empathy from the partner is primordial because they may not understand but hearing them out can be very beneficial and an act of intimacy in itself Pain sensation, relationships Also consider adding that cancer should not be used in a negative way in the discussion (i.e., no accusation; one patient partner was unfortunately once told that if they didn't have cancer, none of the other issues would be happening) Relationships Couple sensate focus Giver and receiver roles Instead of "complaint", a more positive language could be used here; our patient partner offers "positive need" as an alternative Inclusivity Verbal feedback Consider adding here (or somewhere more appropriate) a discussion on scar tissue and the physical feelings (or lack thereof) that can arise; discussing areas where there are feelings or none at all would be important Body image and scars Debriefing (and other partner sensate focus activity steps) Perhaps suggest scheduling regular sessions with one's partner (or solo) to work on this more; this is actually recommended after the stages of sensate focus, but could there be value in adding it here too? Relationships, adaptation Structure of couple sensate focus Sample sensate focus Add sensate activities for single individuals Relationships Additional notes regarding sensate focus - Increasing flexibility This section is very partner-focused; consider making it more generalized or adding examples for single individuals Relationships, adaptation, example Example of sensate focus: Shelina Adapt the case example accordingly; including hot spots Adaptation, example Reminder of rationale Consider adding a section for partners who are unwilling to work with the survivor on this; maybe include tips for those who are navigating this solo with toys and self-touch Relationships 178 This section is also very long; perhaps consider making a video? Adaptation Summary and between-module practice Overall, there are very few cancer links in this module, but some patient partners think it doesn't need it; we’re seeing contradictions here Adaptation Add activities for single individuals (although the module is called couple sensate focus…) Relationships 8 Review of module 7 Consider adding a reminder that this can be done as a single woman Relationships Summary of eSense components and rationale Not focusing on sexual function Consider addressing cancer and its effects here; the body isn't necessarily able to do what it's supposed to do after treatment and because of cancer-related anxiety, so addressing how one can change or adopt a new perspective of sex and sexuality could be useful (one could be relearning and retraining their body - it's not just a desire and arousal issue) Transition, treatment side effects Focusing on contextual maintaining factors Under "in line with this thinking, this program…", consider adding cancer fears, body image and scarring issues, fears of inflammation/recurrence… Pain sensation, body image and scars Maintaining your gains Program ingredients that may have been helpful Perhaps list things about cancer (e.g., coping with fear, especially around the time of appointments, coping with recurrence, with active treatment, etc.) Pain sensation, transition Identify high-risk situations Consider adding examples of high-risk situations for cancer survivors Pain sensation, adaptation Identify early warning signs Consider addressing what survivors should be watching out for (is this normal/okay or a recurrence? Pain with intercourse?) Adaptation Consider adding how to move past a fight with a partner because of cancer and excessive worrying about cancer Relationships Prepare a plan of action Consider including a PDF to prepare the plan of action here Adaptation Perhaps add how speaking with a social worker or therapist may be warranted if things escalate Adaptation What if pain occurs? Perhaps add general information on what to do/when it is a good time to have a check-up done; add a plan for when things may not feel normal Adaptation 179 Example of maintaining gains: Shelina Adapt the case example accordingly; items that can be addressed include fears surrounding cancer, how speaking to a professional (social worker/therapist) may be warranted if fears are too much Adaptation, example Consider making the example more relevant to cancer (including helpful ingredients, high-risk situations, warning signs, etc.) Adaptation, example Helpful ingredients Gaining control of fears and communication aids could be added to "helpful ingredients" Pain sensation, relationships Women's experience with eSense Do adjust the case examples based on the new character stories Adaptation, example Consider adding feelings and emotions experienced by people who have had cancer Pain sensation Consider adding a note about being gentle with timelines and how seeking additional therapy for trauma and sexual dysfunction (like seeing a pelvic floor physio) may be warranted Transition, adaptation Additional treatment options Include specific resources related to treatment following cancer, support groups, etc. Adaptation
Thesis/Dissertation
eng
Women+ and Children’s Health Sciences
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Brotto, Lori A.
Using patient engagement as a strategy for adapting an online digital health tool for gynecological cancer survivors with sexual difficulties and the dissemination of the insights gained from our collaboration with patient partners
Text