Applied Science, Faculty of
Nursing, School of
DSpace
UBCV
McKay, Emily
Master of Science in Nursing - MSN
University of British Columbia
Background: Patients with endometriosis experience a high symptom burden and decreased quality of life. There are known provider education gaps regarding detection and diagnosis of endometriosis. Many patients with endometriosis navigate the healthcare system for years before they are diagnosed. Racialized patients face additional barriers when navigating the healthcare system, including difficulty finding a healthcare provider who will validate their experience of pain. Purpose: The purpose of this study was to learn if patients with endometriosis report experiences of respect and autonomy on their journey to receiving a diagnosis of endometriosis. Methods: This study was conducted as a cross-sectional study. Validated survey tools to measure respect and autonomy in childbirth were adapted for use in patients with endometriosis. A patient research advisory board was composed to review the accessibility of the survey. Participants were primarily recruited through the British Columbia Women’s Hospital Chronic Pelvic Pain and Endometriosis Clinic. Other organizations with increased sample diversity were also included to increase the diversity of the sample. Results: The mean score of respectful care was 48.41 (SD = 5.01), indicative of low overall respect. The mean score for total autonomy is indicative of low autonomy with a mean of 24.10 (SD = 8.35). While a diverse sample was included (25% non-white, 12.6% gender-diverse, 28.6% non-heterosexual), the sample size in each group did not generate significant power to stratify the results based on sociodemographic variables like race, gender identity or sexual orientation. Implications: Further research is needed to replicate this study with a larger sample size to detect these potential differences in care experiences amongst racialized and gender-diverse populations. Overall, patients with endometriosis are disrespected and have few opportunities to demonstrate autonomy in their care. Education to increase awareness about endometriosis and ensure timely diagnosis of endometriosis is essential to improve experiences of care for patients.
DO PATIENTS WITH ENDOMETRIOSIS RECEIVE RESPECTFUL CARE? EXPERIENCE OF CARE AMONG PATIENTS WITH ENDOMETRIOSIS IN BRITISH COLUMBIA by Emily McKay B.Sc.N., University of Western Ontario, 2019A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2023 © Emily McKay, 2023 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, a thesis entitled: DO PATIENTS WITH ENDOMETRIOSIS RECEIVE RESPECTFUL CARE? EXPERIENCE OF CARE AMONG PATIENTS WITH ENDOMETRIOSIS IN BRITISH COLUMBIA submitted by Emily McKay in partial fulfillment of the requirements for the degree of Master of Science in Nursing Examining Committee: Dr. Suzanne H. Campbell, Professor, School of Nursing, UBC Co-Supervisor Dr. Saraswathi Vedam, Professor, School of Midwifery, UBC Co-Supervisor Dr. Paul Yong, Associate Professor, School of Medicine, UBC Supervisory Committee Member Dr. Emmanuela Ojukwu, Assistant Professor, School of Nursing, UBC Supervisory Committee Member iii Abstract Background: Patients with endometriosis experience a high symptom burden and decreased quality of life. There are known provider education gaps regarding detection and diagnosis of endometriosis. Many patients with endometriosis navigate the healthcare system for years before they are diagnosed. Racialized patients face additional barriers when navigating the healthcare system, including difficulty finding a healthcare provider who will validate their experience of pain. Purpose: The purpose of this study was to learn if patients with endometriosis report experiences of respect and autonomy on their journey to receiving a diagnosis of endometriosis. Methods: This study was conducted as a cross-sectional study. Validated survey tools to measure respect and autonomy in childbirth were adapted for use in patients with endometriosis. A patient research advisory board was composed to review the accessibility of the survey. Participants were primarily recruited through the British Columbia Women’s Hospital Chronic Pelvic Pain and Endometriosis Clinic. Other organizations with increased sample diversity were also included to increase the diversity of the sample. Results: The mean score of respectful care was 48.41 (SD = 5.01), indicative of low overall respect. The mean score for total autonomy is indicative of low autonomy with a mean of 24.10 (SD = 8.35). While a diverse sample was included (25% non-white, 12.6% gender-diverse, 28.6% non-heterosexual), the sample size in each group did not generate significant power to stratify the results based on sociodemographic variables like race, gender identity or sexual orientation. Implications: Further research is needed to replicate this study with a larger sample size to detect these potential differences in care experiences amongst racialized and gender-diverse iv populations. Overall, patients with endometriosis are disrespected and have few opportunities to demonstrate autonomy in their care. Education to increase awareness about endometriosis and ensure timely diagnosis of endometriosis is essential to improve experiences of care for patients. v Lay Summary Endometriosis is an inflammatory disease where the endometrial-like tissue that is normally shed during menstruation moves into other structures of the body. Endometriosis can cause pain with intercourse, urination and bowel movements, fatigue, infertility, nausea and bloating, and mental health consequences. When patients begin experiencing symptoms, they often face difficulty finding a provider who will take their symptoms seriously. This dismissal often leads patients to seek care from multiple providers and live with a high symptom burden. The research question we asked was: Do people living with endometriosis and accessing care in British Columbia report experiencing respectful care through their journey to receiving a diagnosis of endometriosis? Participants were surveyed using a validated tool to measure respect and autonomy. We found that participants experienced low levels of respect and autonomy during their time navigating the healthcare system in pursuit of a diagnosis of endometriosis. vi Preface This thesis is the original, unpublished, and independent work of Emily McKay. This thesis was guided by the supervisory committee which included Dr. Suzanne Campbell and Dr. Saraswathi Vedam as co-supervisors and Dr. Emmanuela Ojukwu and Dr. Paul Yong as committee members. The UBC Research Ethics Board approved this study (ID # H22-01106). vii Table of Contents ABSTRACT................................................................................................................................................... iii LAY SUMMARY........................................................................................................................................... v PREFACE ..................................................................................................................................................... vi TABLE OF CONTENTS ............................................................................................................................ vii LIST OF TABLES ......................................................................................................................................... x LIST OF FIGURES ...................................................................................................................................... xi LIST OF ABBREVIATIONS ..................................................................................................................... xii ACKNOWLEDGMENTS .......................................................................................................................... xiii DEDICATION ............................................................................................................................................ xiv CHAPTER 1: BACKGROUND ................................................................................................................... 1 1.1 INTRODUCTION ...................................................................................................................................... 1 1.1.1 Endometriosis ................................................................................................................................ 1 1.1.2 Respectful Care ............................................................................................................................. 2 1.1.3 Healthcare Context ....................................................................................................................... 2 1.2 SURVEY TOOLS ...................................................................................................................................... 3 1.3 THEORETICAL FRAMEWORK .................................................................................................................. 3 1.4 PROBLEM STATEMENT ........................................................................................................................... 4 1.5 PURPOSE ................................................................................................................................................ 4 1.6 RESEARCH QUESTIONS .......................................................................................................................... 5 1.7 SUMMARY .............................................................................................................................................. 5 CHAPTER 2: LITERATURE REVIEW .................................................................................................... 6 2.1 INTRODUCTION ...................................................................................................................................... 6 2.2 REVIEW OF THE LITERATURE ................................................................................................................. 6 2.3 CURRENT LITERATURE .......................................................................................................................... 7 viii 2.3.1 Literature related to High Symptom Burden ................................................................................. 8 2.3.2 Literature related to Quality of Life ............................................................................................ 10 2.3.3 Literature related to Delayed Diagnosis..................................................................................... 13 2.3.4 Literature related to Provider Education Gaps .......................................................................... 15 2.3.5 Literature related to Respect and Autonomy .............................................................................. 16 2.3.6 Literature related to Race ........................................................................................................... 19 2.4 CURRENT GAPS IN THE LITERATURE.................................................................................................... 21 CHAPTER 3: METHODS .......................................................................................................................... 22 3.1 STUDY PROCEDURES............................................................................................................................ 22 3.1.1 Design ......................................................................................................................................... 22 3.1.2 Setting .......................................................................................................................................... 22 3.1.3 Sample ......................................................................................................................................... 23 3.1.4 Patient Research Advisory Board (PRAB) .................................................................................. 23 3.1.5 Recruitment ................................................................................................................................. 25 3.2 ETHICAL CONSIDERATIONS.................................................................................................................. 26 3.2.1 Data Security ............................................................................................................................... 27 3.3 MEASURES ........................................................................................................................................... 28 3.4 DATA COLLECTION .............................................................................................................................. 32 3.5 DATA ANALYSIS .................................................................................................................................. 33 3.6 CHAPTER SUMMARY ............................................................................................................................ 34 CHAPTER 4: RESULTS ............................................................................................................................ 35 4.1 INTRODUCTION .................................................................................................................................... 35 4.2 STUDY SAMPLE .................................................................................................................................... 35 4.3 ONLINE QUALTRICS SURVEY ............................................................................................................... 35 4.3.1 Demographic Data ...................................................................................................................... 35 4.3.2 Frequencies ................................................................................................................................. 40 4.3.3 Results of MORi .......................................................................................................................... 46 ix 4.3.4 Results of MADM ........................................................................................................................ 47 4.3.5 T-Test........................................................................................................................................... 47 4.3.6 Analog Ratings of Healthcare Providers .................................................................................... 50 4.3.8 Perception of Male Influence on Care Received......................................................................... 51 4.4 QUALITATIVE DATA: OPEN ENDED RESPONSES .................................................................................. 52 CHAPTER 5: DISCUSSION ...................................................................................................................... 57 5.1 SUMMARY ............................................................................................................................................ 57 5.2 DISCUSSION OF RESULTS ..................................................................................................................... 57 5.3 STRENGTHS .......................................................................................................................................... 60 5.4 LIMITATIONS ........................................................................................................................................ 61 5.5 NURSING IMPLICATIONS ...................................................................................................................... 62 5.6 FUTURE DIRECTIONS ........................................................................................................................... 63 5.6.1 Research ...................................................................................................................................... 63 5.6.2 Education .................................................................................................................................... 64 5.6.3 Policy........................................................................................................................................... 65 5.7 CONCLUSION........................................................................................................................................ 65 REFERENCES ............................................................................................................................................ 67 APPENDICES .............................................................................................................................................. 76 APPENDIX A: SEARCH STRATEGY.............................................................................................................. 76 APPENDIX B: MORI AND MADM SCALE WITH KEY FOR INTERPRETING RESULTS .................................... 78 APPENDIX C: SURVEY QUESTIONNAIRE .................................................................................................... 81 APPENDIX D: CONSENT COVER LETTER .................................................................................................... 86 APPENDIX E: POSTER ADVERTISEMENT .................................................................................................... 88 APPENDIX F: SOCIAL MEDIA ADVERTISEMENT ......................................................................................... 89 x List of Tables Table 1: Demographic Characteristics of Study Sample………………………………………..37 Table 2: Frequency of Responses for Respect Questionnaire…………………………………...41 Table 3: Frequency of Responses for Autonomy Questionnaire………………………………...44 Table 4: Median Score of Respect and Autonomy based on Demographic Characteristics…….49 Table 5: Analog Rating of Perceived Respect from Healthcare Providers……………………...50 Table 6: Perceptions of Influence of bringing a male partner/friend/family member to Endometriosis Appointments……………………………………………………………………52 xi List of Figures Figure 1: Total Levels of Respectful Care……………………………………………………….46 Figure 2: Total Levels of Autonomy……………………………………………………………..47 xii List of Abbreviations BC British Columbia BCWH British Columbia Women’s Hospital CACBN Coalition of African, Caribbean and Black Nurses in B.C. CCBC Changing Childbirth in British Columbia CNA Canadian Nurses Association CPP Chronic Pelvic Pain and Endometriosis Clinic FIPPA Freedom of Information and Protection of Privacy Act GP General Practitioner GI Gastrointestinal IP Internet Protocol MADM Mothers Autonomy in Decision Making MORi Mothers on Respect Index OB/GYN Obstetrics/Gynecology PI Primary Investigator PRAB Patient Research Advisory Board REB Research Ethics Board SSRI Selective Serotonin Reuptake Inhibitors TCPS Tri-council Policy Statement UBC University of British Columbia US United States WHO World Health Organization WHRI Women’s Health Research Institute xiii Acknowledgments This thesis would not have been possible without the dedication and support of my co-supervisors, Dr. Suzanne Campbell and Dr. Saraswathi Vedam, and my committee members, Dr. Paul Yong and Dr. Emmanuela Ojukwu. Thank you for all the time and encouragement you have given me throughout this process, I offer you my sincerest gratitude. Thank you to everyone who participated in this study. I was deeply touched by each of your stories, and I hope that this work will help to increase the accessibility of and improve endometriosis care services. I am so grateful for the mentorship and support provided by the MSN faculty at UBC. This program has been instrumental in helping me find my voice as a nurse and advocate within the healthcare system. Thank you to the Canadian Nurses Foundation for the scholarship support that they provided to help to make this degree possible. Finally, thank you to my family and friends who have supported me throughout this process. Thank you for believing in me when I didn’t believe in myself. Your love and encouragement made this degree possible. xiv Dedication To my mom, for showing me what is possible when you believe in something. 1 Chapter 1: Background 1.1 Introduction Endometriosis impacts approximately ten percent of women of reproductive age, but there is a significant research gap regarding the experience of respectful care for patients with endometriosis. Frequently, people with endometriosis cite respect, or a holistic approach, as missing from their care (Grundström et al., 2018). The World Health Organization [WHO] has identified the receipt of respectful healthcare services as a fundamental human right (2021). 1.1.1 Endometriosis Endometriosis is a condition in which endometrial-like tissue growing outside of the uterus becomes inflamed in the presence of estrogen (Leuenberger et al., 2022; Schneider et al., 2020). The inflammatory process can cause symptoms of pelvic pain, dysmenorrhea, dyspareunia, infertility, back pain, fatigue, and gastrointestinal or urinary tract issues (Gupta et al., 2021; Keeler et al., 2020; Missmer et al., 2022; Simonsen et al., 2020). The intensity of the symptoms experienced can cause changes to mental health, strain interpersonal relationships or increase financial burden (Gupta et al., 2021; Missmer et al., 2022; Simonsen et al., 2020). The experience of endometriosis symptom burden is not relative to the stage of endometriosis progression (van Barneveld et al., 2022). Endometrial-like tissue can implant on any surrounding organs, most commonly the bladder, bowel, and other reproductive structures (Leuenberger et al., 2022). It is estimated that endometriosis occurs in 10% of women and an unknown percentage of transgender, non-binary, and gender-diverse people (Leuenberger et al., 2022; Missmer et al., 2022; Young et al., 2015). The cause of endometriosis is not known and there is no cure for the disease (Leuenberger et al., 2022). To manage the pain and symptoms of endometriosis, patients 2 are often prescribed pain medication, combined hormonal contraception, progestin hormonal therapy, or GnRH agonist/antagonist medications (Keeler et al., 2020; Leuenberger et al., 2022). Ongoing symptom management often requires surgery to remove endometrial-like tissue and potentially remove affected organs or the uterus (Rowe et al., 2021). Historically, the conventional method to diagnose endometriosis was by laparoscopic surgery (Rowe et al., 2021). Care for endometriosis is complex and ongoing and many healthcare providers lack the education and tools to do so (Rowe et al., 2021). Patients often report symptoms of depression and anxiety because of their endometriosis pain or treatments (van Barneveld et al., 2022). 1.1.2 Respectful Care Respect is a fundamental component of nurses, midwives, and physicians’ practices in the provision of patient-centered care (Nigusie et al., 2022; WHO, 2018). It is a human right to receive respectful healthcare services (WHO, 2021). The Canadian Nurses Association [CNA] includes respect as a key component of the Code of Ethics for Registered Nurses in Canada (2017). Respectful care includes respect for all patient’s unique personhood; including ability to exercise autonomy in decisions about their care, dignity, justice, beneficence, and non-maleficence (CNA, 2017). Rowe et al. (2021) also utilize a framework of evaluating the quality of healthcare services based on patients having access to necessary health information, respectful care, and provider competency. 1.1.3 Healthcare Context Access to specialized pelvic pain and endometriosis care services in Canada is limited. This study took place in British Columbia (BC), Canada. British Columbia Women’s Hospital (BCWH) in Vancouver is home to one of the few specialized pelvic pain clinics in Canada (CPP). BCWH CPP was the primary location for participant recruitment for this study and 3 therefore the sample reflects patients who have accessed care in BC or receive care at the CPP clinic. Services at the CPP clinic are provided through an interdisciplinary approach and covered by the provincial health plan. 1.2 Survey Tools The community based participatory action study, Changing Childbirth in British Columbia (CCBC) examined gaps in the receipt of childbirth healthcare services in Canada (Vedam et al., 2018). In collaboration with a Community Steering Council, researchers at the UBC Birth Place Lab developed and validated several scales that measure the experience of respectful care when accessing perinatal services in Canada and the United States. For the purposes of this research project, two of these scales, Mothers on Respect index (MORi), and Mothers Autonomy in Decision Making scale (MADM), will be adapted and applied to quantify the experience of respectful care for patients with endometriosis (Appendix B) (Vedam, Stoll, Martin et al., 2017; Vedam, Stoll, Rubashkin et al., 2017). 1.3 Theoretical Framework A feminist lens is essential to address the over-medicalization and somatization of patients with endometriosis (Young et al., 2019). Somatization is the attribution of endometriosis symptoms to psychological distress by healthcare providers. The oppression of women and gender-diverse people within the healthcare system cannot be separated from the oppression of women and gender-diverse people within society. There is a connection between women’s gendered role within society and the inadequate, insufficient, and often inaccessible reproductive health services available within the traditional biomedical model of the healthcare system (Wright, 2019; Young et al., 2019). Outside of childbirth, the resources allocated to women and gender-diverse people’s healthcare services are minimal, which is evident in the lack of research 4 about women and gender-diverse people’s health. The lack of research and resources for people with endometriosis is just one example of how the biomedical model has failed people with reproductive disorders. Not providing people with endometriosis with adequate care services, is an example of lives being economically, socially, and medically controlled by the patriarchal structures of the healthcare system and society at large. 1.4 Problem Statement Patients with endometriosis frequently list respect as missing from their care. In the experience of navigating the healthcare system in pursuit of a diagnosis, many patients are dismissed and their symptoms are trivialized by healthcare providers. Respect is a key pillar of the delivery of patient-centered care and nursing practice. There is a significant research gap regarding the experience of respectful care for patients with endometriosis. Endometriosis patients report decreased quality of life (Van Niekerk et al., 2022), delayed diagnosis (Rush & Misajon, 2018), high symptom burden (Rush & Misajon, 2018), dismissal or symptom mismanagement by providers without sufficient education about endometriosis (As-Sanie et al., 2019), and increased barriers to care for racialized populations (Bougie et al., 2019). Understanding how these factors link to the experience of respectful care for patients with endometriosis is critical to optimize the quality of healthcare services. 1.5 Purpose This research project aimed to understand how people living with endometriosis and accessing care in BC report experiencing care through their journey to receiving a diagnosis of endometriosis. We also assessed the relationships between the experience of care and the patient’s race or type of care provider. 5 1.6 Research Questions Do people living with endometriosis and accessing care in BC report experiencing respectful care through their journey to receiving a diagnosis of endometriosis? What is the relationship between the delivery of respectful care and the patient’s race and/or type of care provider? 1.7 Summary This chapter introduces the concepts of endometriosis, respectful care, and the delivery of healthcare services in BC. The research tools, problem, purpose, and questions are also clearly described. The next chapter will describe current literature and research gaps relating to the delivery of respectful care services for patients with endometriosis. 6 Chapter 2: Literature Review 2.1 Introduction This chapter will describe the steps undertaken to complete the literature review, the current literature available, relevant literature gaps, and the utilized theoretical framework. 2.2 Review of the Literature To review the research, systematic searches were conducted in CINAHL, Pubmed, Medline, and Psycinfo to review the available literature from an interdisciplinary perspective. The specific search strategies used are available in Appendix A. The search aimed to find relevant research about the experience of endometriosis care and if factors such as type of care provider or stigmatization influence the experience of endometriosis care services. The search was expanded beyond the concepts of respect and endometriosis since very limited literature was available. Literature relevant to quality of life, delayed diagnosis, high symptom burden or provider education gaps were included to contextualize the experience of respectful care for patients with endometriosis and inform the creation of the research questions. The key words utilized were specific to each database but included key concepts of respect, lived experience, health beliefs, quality of life, endometriosis, pelvic pain, pain, and patient-provider relationships. This search yielded 367 articles across 4 databases, articles were excluded if they were duplicates, relevant only to the clinical management of endometriosis, not relevant to the experience of care for patients with endometriosis, in a healthcare setting that did not hold clinical relevance to the BC context, not published within the past 10 years, not available as a full-text, or not available through the University of British Columbia (UBC) database. The studies were limited to the language within which all reviewers shared a common fluency, which was the English Language. Twenty-seven articles were reviewed in detail to inform this study. 7 The reference list in the 27 articles identified were reviewed to ensure that no relevant articles were missed. A second literature review was conducted to assess what is known about the impact of race on the type of care received by patients with endometriosis. The same inclusion criteria were applied to this review. Key terms utilized for this search included: endometriosis, adenomyosis, "endometriosis complications", "endometriosis care", “race factors", "ethnic groups+", "race relations+", racism, discrimination, prejudice, racial bias. This search was completed in CINAHL and Medline and identified 101 articles. Of the 101 articles, 3 were reviewed in detail. Articles were excluded if they were relevant only to the clinical management of endometriosis, not relevant to the experience of care for patients with endometriosis, in a healthcare setting that did not hold clinical relevance to the BC context, not published in the past 10 years, not available as a full-text, not available in English, or not available through the UBC database. Therefore, a total of 30 articles were used to inform the development of this study. 2.3 Current Literature The experience of endometriosis is explored in current research in relationship to quality of life, delayed diagnosis, high symptom burden, provider education gaps and variations in experiences for racialized groups. While these concepts independently suggest experiences of disrespect for patients, the concept of respectful care during endometriosis management has not been measured with validated metrics to this author’s knowledge. Literature that describes the impact of respectful care in study populations with other chronic health conditions will be explored. 8 2.3.1 Literature related to High Symptom Burden Rush & Misajon (2018) utilized a mixed methodology approach to show how the burden of endometriosis extends beyond the experience of physical symptoms to impact many domains of daily life and found that 86% of participants encounter pain that is beyond their coping abilities on a semi-regular basis, resulting in professional and financial repercussions. The survey (Personal Wellbeing Index and the Endometriosis Health Profile-30) was completed by 500 participants in Australia (Rush & Misajon, 2018). Participants expressed a lack of control, anxiety and depression symptoms, a high degree of impact on their daily lives, and feelings of isolation, inadequacy, and difficulty fitting in (Rush & Misajon, 2018). Missmer et al. (2022) studied patient perception of how endometriosis impacted overall ability to engage in educational or professional activities, relationships, and health. This study was delivered virtually through a social media platform to anyone aged 19 or older with endometriosis in an English-speaking country. The quantitative survey tool was 14-questions and adapted from a validated survey tool used to measure the impact of psoriasis on participants’ lives (Missmer et al., 2022). Seven hundred and forty-three (743) participants completed the survey; the symptom burden of endometriosis was found to be a negative influence on these domains of life and health (Missmer et al., 2022). Gupta et al. (2021) developed an online survey tool from their previous research to measure symptom burden of endometriosis and the impact that had on educational or professional activities, relationships, and health. The study population included 468 participants between the ages 18-25 in the United States (Gupta et al., 2021). Significantly, 82.7% reported relationship impacts, 58.8% reported education impacts and 34.4% reported professional impacts (Gupta et al., 2021). 9 Soliman et al. (2020) compared Canadian women with a diagnosis of endometriosis (n = 2004) to Canadian women without endometriosis (n = 26,528) based on fatigue levels and found that women with endometriosis have significantly higher fatigue levels than the general population. Canadian census data was used to ensure that the participants were representative of various age, education levels, location, and socioeconomic status (Soliman et al., 2020). The cross-sectional study utilized the Patient-Reported Outcomes Measurement Information System survey to compare fatigue scores for both groups (Soliman et al., 2020). Only women with endometriosis completed the Work Productivity and Activity Impairment−Specific Health Problem to assess overall productivity (Soliman et al., 2020). Endometriosis participants were found to have challenges related to productivity, for example consistently attending and performing to full capacity at work (Soliman et al., 2020). In a mixed methods sequential explanatory analysis, Zarbo et al. (2019) identified correlations between intensity of pain over 3 months, worry, self-blame and catastrophizing. In the quantitative component of this survey 162 participants in Italy completed several validated questionnaires: Short-Form McGill Pain Questionnaire, Penn State Worry Questionnaire, Cognitive Emotion Regulation Questionnaire—Short Version (Zarbo et al., 2019). Six participants also completed semi-structured interviews (Zarbo et al., 2019). In the qualitative component themes of a lack of control over the pain, thought processes, and medicalization of symptoms were described (Zarbo et al., 2019). Many patients with endometriosis report symptoms of various mental health concerns, primarily depression and anxiety (van Barneveld et al., 2022). Van Barneveld et al. (2022) conducted a systematic review of 4 databases and reviewed 17 articles relevant to the mental health consequences of endometriosis in depth. The prevalence of mental health consequences 10 among endometriosis patients provokes controversy and misconceptions about whether the mental health concerns arise before or after endometriosis symptom onset (van Barneveld et al., 2022). The involvement of psychological health in endometriosis symptomology has significant impacts on patient’s overall wellbeing and experience of care. 2.3.2 Literature related to Quality of Life Quality of life related to endometriosis is influenced by a myriad of factors (Van Niekerk et al., 2022). The symptom burden, as described in section 2.3.1, reasonably impacts and decreases quality of life. In a cross-sectional study, Van Niekerk et al. (2022) found that age, symptom burden, mental distress, depression, pain, bloating, and dyspareunia decreased quality of life. Three hundred eighteen participants completed this survey from around the world. This study had participants self-report symptom presence over a 1-month period in addition to completing the Patient Health Questionnaire, Patient-Reported Outcomes Measurement Information System (PROMIS)—Emotional Distress, and the Endometriosis Health Profile (Van Niekerk et al., 2022). Leuenberger et al. (2022) evaluated the impact of chronic pain related to endometriosis and other chronic pain conditions on daily life in a cross-sectional study. Two surveys were administered (Brief Pain Inventory and the Pain Disability Index) to 510 participants across Switzerland, Austria and Germany (Leuenberger et al., 2022). They found that despite current treatments, 50% experience regular and intense pain. Pain has a negative impact on quality of life and needs more attention in further research (Leuenberger et al., 2022). Sullivan-Myers et al. (2021) also report a high prevalence (greater than 50%) of depression, anxiety, and stress amongst people with endometriosis. However, the findings link psychological concerns experienced to things outside of the medical system like quality of life, 11 ability to maintain relationships and self-perception (Sullivan-Myers et al., 2021). This was a cross-sectional analysis of a longitudinal study of 584 participants in Australia (Sullivan-Myers et al., 2021). The link between endometriosis and depression and anxiety is affirmed throughout most relevant research (Rees et al., 2022). Rees et al. (2022) conducted a cross-sectional study that surveyed 230 participants in the UK. The survey tools used included: Mishel Uncertainty in Illness Scale Community Form, Vanderbilt Pain Management Inventory, Multidimensional Health Locus of Control Scale Form C, The Pain Self-Efficacy Questionnaire, and The World Health Organization Quality of Life-BREF (Rees et al., 2022). Psychological concerns, the ability to manage pain and deal with the unknown of navigating pelvic pain are all associated with a decreased quality of life (Rees et al., 2022). While the primary pain associated with endometriosis is pelvic pain, dyspareunia refers to painful intercourse and negatively impacts many people living with endometriosis. Schneider et al. (2020) attempted to quantify the prevalence of dyspareunia and its impact on quality of life for patients 18-25 years old. One hundred fifty-one participants from a larger, longitudinal cohort study that took place in Boston, Massachusetts completed the Medical Outcomes Study Short Form-36 survey (Schneider et al., 2020). People with endometriosis have painful intercourse twice as often as their counterparts without endometriosis and it reportedly decreases quality of life (Schneider et al., 2020). Dyspareunia can also be associated with relationship strain that can impact overall quality of life (Schneider et al., 2020). An Italian study showed that people with endometriosis self-report significantly lower measures of sexual wellbeing than their counterparts without endometriosis (Giuliani et al., 2016). Guiliani et al. (2016) utilized the World Health Organization Quality of Life and the 12 McCoy Female Sexuality Questionnaire in an experimental study with 150 participants in each group (Giuliani et al., 2016). Bień et al. (2020) conducted a cross-sectional survey in Poland with 309 participants and utilized the World Health Organization Quality of Life-Bref, the Acceptance of Illness Scale and the Laitinen scale. Dyspareunia in addition to relational impact with partners, education status, acceptance of diagnosis and BMI were associated with perceived quality of life (Bień et al., 2020). An alternate study conducted a qualitative analysis of patient and healthcare providers in Australia to learn about how endometriosis care services are perceived by different groups (Rowe et al., 2021). Data was collected through online discussions for patients (n = 46) and semi-structured interviews for healthcare providers (n = 13); the data was analyzed through Framework Analysis (Rowe et al., 2021). This study suggests that the delivery of respectful care is a potential way to improve quality of life for people with endometriosis (Rowe et al., 2021). To elaborate, patients feel more validated by their care if they are treated with respect (Rowe et al., 2021). Respect was also explored within the idea of respecting the patient as an expert on their body and experience (Rowe et al., 2021). In evaluation of wellbeing, people with endometriosis score significantly lower than those without endometriosis (Rush et al., 2019). The frequency of endometriosis symptoms is directly related to many domains of wellbeing (Rush et al., 2019). The referenced domains of wellbeing included: “life as a whole, standard of living, health, personal relationships, achieving in life, safety, future security, community connectedness” (p. 4). Rush et al. (2019) established these findings through an exploratory study of 2061 participants in Australia and New Zealand. A 13 survey to measure subjective wellbeing was utilized: The Biberoglu and Behrman Scale and The Personal Wellbeing Index (Rush et al., 2019). In a qualitative thematic analysis, 34 patients in the UK described their experiences with endometriosis (Grogan et al., 2018). The study found that wellbeing is difficult to maintain when managing a chronic pain condition, and participants describe the journey of fighting for a diagnosis as a battle and feel the need to self-manage their symptoms through isolation (Grogan et al., 2018). The decreased quality of life experienced while advocating for a diagnosis of endometriosis and during treatment is a long and exhausting process that needs to be taken seriously by healthcare professionals (Grogan et al., 2018). 2.3.3 Literature related to Delayed Diagnosis Despite its prevalence, people with endometriosis often face a delayed diagnosis of 5-7.9 years (Rush & Misajon, 2018). The Society for Women’s Health Research established a roundtable method for data collection to engage relevant stakeholders in discussions on how care can be improved and diagnostic delays can be shortened (As-Sanie et al., 2019). It is common for people to visit multiple healthcare providers before their symptoms are recognized as suspicious for endometriosis and the appropriate tests are completed (As-Sanie et al., 2019). Delayed diagnosis decreases quality of life while the patient is navigating the symptom burden of endometriosis and potentially reduces fertility outcomes (As-Sanie et al., 2019). Decreased provider education and availability or usability of diagnostic tools increases diagnostic delays further (As-Sanie et al., 2019). Delay in diagnosis is attributable to healthcare providers not taking patient’s concerns seriously (As-Sanie et al., 2019; Sims et al., 2021; Wright, 2019; Zanden et al., 2020). Healthcare providers in the Netherlands (n = 43) were interviewed in focus groups to identify barriers to a 14 timely diagnosis of endometriosis (Zanden et al., 2020). It was determined that general practitioners have low levels of urgency to diagnose endometriosis, are likely to prescribe birth control, are reluctant to refer patients for further testing or gynecology consultations and lack the education or guidelines to quickly identify symptoms (Zanden et al., 2020). Gupta et al. (2021) report that the stigma associated with menstruation can delay diagnosis of endometriosis further. Stigmatization of endometriosis can further delay diagnosis due to patient conceptions that they will be perceived as whiny or high needs (As-Sanie et al., 2019; Sims et al., 2021). The lack of understanding about endometriosis or validation of symptom experience amongst healthcare professionals reaffirms the societal narrative that endometriosis is not a serious or life-threatening condition (Sims et al., 2021). Sims et al. (2021) provide a literature review of factors that influence endometriosis stigmatization and the related consequences for patients. People with endometriosis live with chronic pelvic pain, fertility issues, painful intercourse and urination, and subsequent mental health disorders for years without validation of their illness (Simonsen et al., 2020). Simonsen et al. (2020) conducted a qualitative study to measure patient autonomy through Guided Self-Determination interviews and focus groups. The Endometriosis Health Profile 30 and the Patient Activation Measure were collected before and after participating in the study (Simonsen et al., 2020). Key results included the patient prioritization of their relationship with their healthcare provider, including holistic and respectful care (Simonsen et al., 2020). An essential component of the patient-provider relationship includes validation of the patient’s illness experience. There is limited research and education for healthcare professionals about the best way to manage endometriosis from an interdisciplinary perspective. This leads to many people not 15 having access to care or awareness of ways to cope with the illness. Delayed diagnosis while living with a chronic and painful illness is isolating and has significant economic and social consequences. 2.3.4 Literature related to Provider Education Gaps Endometriosis literature historically regards patients as hysterical, which may be an attributable factor to why patients struggle to be taken seriously by their healthcare providers (Wright, 2019; Young et al., 2019). The unknown and misunderstood nature of endometriosis threatens the medical system’s ability to control women, transgender, non-binary, and gender-diverse people’s bodies and challenges the relationship between fertility and a woman’s societal role (Wright, 2019; Young et al., 2019). Only in listening to patients and allowing their experiences to be treated as knowledge that guides the care process, instead of solely emphasizing medical ways of knowing, can we change the narrative behind medicine and improve the provider education gap about endometriosis (Wright, 2019; Young et al., 2019). Wright (2019) contributed to these findings through the publication of a narrative essay recounting their own experiences navigating the healthcare system with endometriosis. Young et al. (2019) interviewed 12 healthcare providers in Australia and conducted a thematic analysis to understand healthcare providers perceptions of endometriosis patients. A significant portion of general practitioners do not feel comfortable identifying the symptoms of endometriosis and making referrals as needed (As-Sanie et al., 2019). Grundström et al. (2018) conducted a qualitative interpretive phenomenological study in Sweden with 9 patients with endometriosis. The nature of endometriosis symptoms requires patients to be vulnerable in expressing their experience to healthcare providers, it is especially challenging for this vulnerability to be normalized or met with a prominent education deficit (Grundström et al., 16 2018). When patients are treated with empathy and given a diagnosis it can positively impact self-esteem (Grundström et al., 2018). Referrals are also delayed until further testing can be done or until the provider deems it necessary, increasing the diagnostic delay period (As-Sanie et al., 2019; Grundström et al., 2018). Specialists may not be available in all geographic areas, decreasing access to specialized care (As-Sanie et al., 2019). The lack of education and guidelines for healthcare providers makes diagnosing and treating endometriosis very difficult (As-Sanie et al., 2019). Navigating the healthcare system in pursuit of a diagnosis of endometriosis can cause patients to feel disrespected (Grundström et al., 2018). 2.3.5 Literature related to Respect and Autonomy The MORi was developed to provide a standardized tool to measure respect in maternity care settings (Vedam, Stoll, Rubashkin et al., 2017). The need for an established tool to measure respect in childbirth was suggested by Bohren et al. (2015), who identified key domains of disrespect: “physical abuse, sexual abuse, verbal abuse, stigma and discrimination, failure to meet professional standards of care, poor rapport between women and providers, and health system conditions and constraints” (p. 1). Bohren et al. (2015) established the domains of disrespect through a mixed-methods systematic review that included 65 studies from 34 countries. The current literature about endometriosis indicates that stigmatization and discrimination are present for patients with endometriosis, particularly for marginalized populations (section 2.3.6). In addition, current literature identifies that healthcare providers are consistently not diagnosing patients with endometriosis in a timely manner (section 2.3.4) due to education gaps (section 2.3.5) or dismissal of the patient’s symptoms as normal period pain (section 2.3.2). This may be representative of the inequitable allocation of resources between 17 urgent and chronic care cases within the healthcare system. The impact of this disrespect is a decreased quality of life for patients with endometriosis (section 2.3.3). It was essential to develop tools to measure respect and autonomy in childbirth because a deficit is associated with negative patient outcomes, experiences of care and quality of life (Vedam, Stoll, Martin et al., 2017). The MADM scale was developed to measure the patient’s ability to exercise autonomy when making decisions regarding their maternity care. The ability to make decisions about the care received is a key component of patient-centered care (Vedam, Stoll, Martin et al., 2017). It is understood that patients with endometriosis have lower wellbeing than the general population (Rush et al., 2019), and respectful care can improve quality of life (Rowe et al., 2021). However, no tool has been developed to measure the experience of respect or ability to exercise autonomy for patients with endometriosis and very limited literature has explored this concept. The positive impact of respect and autonomy on the patient-provider relationship and overall patient outcomes is not limited to maternity care settings. Voshaar et al. (2015) identified that patient autonomy in decision making and support are key components of patient-centered care. This study was a review of the literature about patient-centered care for patients with rheumatoid arthritis (Voshaar et al., 2015). Patients with rheumatoid arthritis deal with similar concerns to patients with endometriosis, including chronic inflammation that causes pain and fatigue (Batko, 2020). When symptoms are dismissed by healthcare providers it leads to inadequate delivery of treatment, mental health consequences for patients and strained relationship between patients and their healthcare providers (Batko, 2020). Batko established their findings in a thoroughly researched perspective analysis review of the literature. 18 Patients seeking access to abortion care services may face similar challenges to patients with endometriosis, like stigmatization or barriers to care. Norman & Munro (2020) report that the willingness of a provider to make a referral, education deficits and judgmental attitudes can impact a patient’s access to care services. These barriers closely mirror the barriers encountered by patients with endometriosis when navigating the healthcare system. In this editorial, the authors suggest telemedicine as an option to provide more respectful delivery of abortion care services considering the Covid-19 pandemic (Norman & Munro, 2020). The Canadian Contraceptive Consensus highlights the delivery of respectful care services as a key priority in making abortion services accessible to all Canadians (Black et al., 2015). The MORi and MADM scale have been adapted for use in other practice settings. Feijen-de Jong et al. (2020) utilized both tools to evaluate respect and autonomy in Dutch maternity care. Their study conducted a sound psychometric evaluation of the tools after adaptation of the language and healthcare context (Feijen-de Jong et al., 2020). Other studies have cited the MORi or MADM scale in the development of new survey tools to measure respect and autonomy in other medical settings. Most notably, Harper et al. (2022) references the MADM tool as an effective way to work towards increasing reproductive autonomy for patients. Harper et al. (2022) developed an alternate scale to measure autonomy in shared decision-making regarding contraceptives, the Contraception Agency Scale. I selected the MORi and MADM scale for use with patients with endometriosis because there are no tools established to measure the experience of respect and autonomy within the literature. The MORi and MADM were developed because there was previously no tool to measure respect and autonomy in maternity care and these tools have been validated as the gold standard to measure these concepts. In review of the MORi and MADM scale, it was apparent 19 that only small language modifications would be necessary to adapt the tools for use in endometriosis care. Details specific to how these changes were made are provided in the methods section. With these tools, this study was able to quantify respect and autonomy in endometriosis care. A similar approach to Feijen-de Jong et al. (2020) was undertaken through the administration of an online cross-sectional survey. When people with endometriosis are disrespected in their care it causes patients to take on an increased symptom burden, damages the relationship between patients and healthcare providers, increases time to diagnosis, and decreases quality of life. An in-depth literature review was completed to describe the experience of care for patients with endometriosis. 2.3.6 Literature related to Race Within endometriosis literature and medical practice there are misconceptions regarding the prevalence of endometriosis among racialized groups. Historically, endometriosis was believed to be a disorder that only affected white people since racialized groups did not have adequate access to reproductive care services or healthcare providers who would validate their pain (Bougie et al., 2022). Bougie et al. (2022) completed a narrative review of the existing literature about endometriosis and race. Black people’s experience of pain has been dismissed and consistently mismanaged by healthcare providers (Bougie et al., 2022; Fante-Coleman et al., 2022; Hoffman et al., 2016; Todd et al., 2000). The dismissal of racialized patients’ experiences of pain is rooted within healthcare education systems and is prevalent across different types of care (Bougie et al., 2022). It is essential to learn how racialized groups experience navigating the healthcare system with chronic pelvic pain to improve the quality of endometriosis care services for racialized patients 20 (Bougie et al., 2019). Bougie et al. (2019) recounted a historical review of the relationship between race and endometriosis. Health disparities exist for racialized people within the Canadian healthcare system (Devotta et al., 2023; Public Health Agency of Canada [PHAC], 2018). Indigenous people have lower life expectancies, health-adjusted life expectancy and higher infant mortality rates compared to the Canadian population (PHAC, 2018). Mental health disparities are also reported at higher rates when assessed within the influence of other social determinants of health (PHAC, 2018). African, Caribbean and Black Canadians face structural barriers to accessing care in the Canadian healthcare system (Fante-Coleman et al., 2022). In a qualitative study in Ontario, 41 participants engaged in focus groups (Fante-Coleman et al., 2022). Some of the identified barriers to care are reported as a cultural incompetence, racism, and dismissal (Fante-Coleman et al., 2022). These barriers to care are also present for racialized patients with endometriosis and need to be assessed. Devotta et al. (2023) discuss the barriers that racialized patients in Ontario face to engage in routine cervical cancer screening through a mixed methods study with 100 participants. This study was essential to increase the accessibility of cervical screening for racialized patients by removing the barrier of not having a general practitioner or transportation issues, in a culturally safe manner (Devotta et al., 2023). An alternate cross-sectional study was completed to gather information about clinical presentation of Hispanic/Latinx endometriosis patients (Flores-Caldera et al., 2021). This survey was completed by 1,378 participants in 23 countries and is the first study to develop specific international endometriosis guidelines for Hispanic/Latinx people with endometriosis (Flores-Caldera et al., 2021). Without research that recognizes variances in how diseases like endometriosis present in various racial identities, patients are misdiagnosed or 21 dismissed by the healthcare system (Flores-Caldera et al., 2021). These studies are just a few examples of how racialized patients can encounter barriers when navigating the healthcare system. It is essential to include race and other social determinants of health as variables of interest in research to capture the perspective of how marginalization impacts health outcomes and experiences. 2.4 Current Gaps in the Literature The literature reviewed in this chapter describes the high symptom burden (Rush & Misajon, 2018), decreased quality of life (Van Niekerk et al., 2022), delayed diagnosis (Rush & Misajon, 2018), provider education gaps (As-Sanie et al., 2019), and increased barriers to care for racialized populations (Bougie et al., 2019) associated with endometriosis. However, no literature reviewed describes whether patients with endometriosis feel respected on their journey of advocating for an accurate diagnosis. This study addresses that gap in the literature and describes how specific healthcare providers and the patient’s race may influence the experience of respectful care. A cross-sectional design was selected to represent the results of the survey tools most accurately. Detailed information about this study’s methodology will be described in Chapter 3. 22 Chapter 3: Methods 3.1 Study Procedures As evidenced by the literature described in Chapter 2, patients with endometriosis manage a high symptom burden that greatly impacts quality of life and face significant barriers to care. I was interested to understand if the concepts of respect and autonomy had been studied in relationship to patients with endometriosis’ experiences navigating the healthcare system. Limited research was available about respect and autonomy for patients with endometriosis, so no tools had been established to measure these concepts. However, the CCBC study validated tools to measure respect and autonomy in childbirth that were modified for use with endometriosis patients (Vedam et al., 2018). The process of how these tools were modified and how the study was conducted will be explained in this chapter. 3.1.1 Design This study was done as a cross-sectional study to assess the experience of respectful care through a patient’s journey to receiving a diagnosis of endometriosis, and the relationship between the experience of respectful care and the patient’s race or type of care provider. The independent variables are type of care provider, and race. The dependent variable is the reported experience of respectful care. This study was approved by the UBC Research Ethics Board (REB) on July 26, 2022 (REB: H22-01106). 3.1.2 Setting The setting of this study was BC, Canada. Within BC, there is one specialized clinic that provides care for people with chronic pelvic pain and endometriosis. This clinic was the primary source of data collection and sampling. The British Columbia Women’s Hospital Chronic Pelvic Pain and Endometriosis Clinic (BCWH CPP) provides interdisciplinary care services that are 23 financially covered by the provincial health plan. This study took place during the Covid-19 pandemic in BC. 3.1.3 Sample To be included in this study, patients were required to have a diagnosis of endometriosis. Specific inclusion criteria required participants to live in or receive endometriosis care services in BC and be at least nineteen years of age. Participants were excluded if they did not provide information on the demographic questionnaire to confirm that they met the criteria to participate in the study, had pelvic pain related to a different gynecological condition, or were unable to complete the survey in its online delivery or the English language. 3.1.4 Patient Research Advisory Board (PRAB) The patient research advisory board (PRAB) at BCWH CPP was consulted to review the overall accessibility and relevancy of the proposed survey. The PRAB consists of patients recruited from the BCWH CPP clinic, to provide patient perspectives on research. Meeting with a PRAB is an example of community engagement in research. Community engagement is essential in studies that describe health inequities like endometriosis and the delivery of patient-centered care (Goodman et al., 2017). In preparation for the meeting with the PRAB, a 1-page study summary sheet and a brief PowerPoint presentation were created to share the details and aims of the study, as well as to review the survey questions. Three questions were initially posed to the PRAB: 1) Do you feel like the survey questions are presented in an accessible way? Do you believe that the demographic questionnaire is inclusive to all patients? 2) Are there other things that you believe this study should ask or focus on? 3) Suggestions for how to recruit participants and encourage participation. 24 In response to question 1, the PRAB recommended including a demographic question about sexual identity, primary reason for seeking care [select all that apply] and rewording demographic questions to the age of onset instead of year of onset. The PRAB also recommended changing the language of the question asking about if they reside in BC to include those who have sought care in BC since services in other provinces and territories are limited. These changes were made within the demographic questionnaire. They also suggested that we compare the results to people with endometriosis symptoms who do not have a diagnosis of endometriosis. We acknowledged this would be valuable information and yet it fell outside of the scope of this present study. In response to question 2, the PRAB suggested adding a question to the survey to inquire about how participants felt bringing a male to their appointments changed the care that they received. This question was added to the survey with an open text box to allow for participants to elaborate on their experiences: “Has bringing a male partner/friend/family member to endometriosis appointments changed the way you were treated by your healthcare provider?” To answer question 3, Facebook and social media was suggested by the PRAB. It was also suggested to create a landing page for the study through the UBC. Social media was utilized as a tool to advertise the study. Given the scale of the study within a master’s thesis, a landing page was not created for this study. Other suggestions from the PRAB included providing language to more clearly differentiate if the survey questions were referring to the time before diagnosis or after, removing the focus of respectful care from study advertisements as to not skew the study results, language changes to study advertisements, and to analyze the effect of sexual and gender identity on 25 experiences of respectful care. These changes were all implemented. The analysis of sexual and gender identity could not be completed due to insufficient sample size. The feedback gained from the PRAB was very helpful in the development of this study and helped to ensure that the findings are relevant to the unique needs of people living with endometriosis. In summary, the changes made to the demographic questionnaire on the recommendation of the PRAB included adding a question about sexual identity, rephrasing the question about year of symptom onset to age of symptom onset, and changing the language of the question about residency status to include those who have sought care in BC but do not live in BC. A question was also added to investigate the role of bringing a male to appointments and whether that influenced the care received by patients. Social media was used as a platform for recruitment on the recommendation of the PRAB. The language in asking participants to reflect upon their journey to a diagnosis of endometriosis was changed to clearly emphasize that the participant should reflect upon their time before diagnosis. The poster was also modified to remove the word respect. 3.1.5 Recruitment To recruit participants, I used convenience and snowball sampling of patients from the BCWH CPP clinic. The study information was circulated in the clinic newsletter to patients who had previously consented to the Endometriosis and Pelvic Pain Interdisciplinary Registry (Clinicaltrials.gov # NCT02911090). No pre-existing registry data was accessed for the purposes of this research. Committee member Dr. Yong is a practicing Gynecologist at the BCWH CPP and facilitated the connection and access to this patient registry. I also used social media networking via the clinic’s twitter account to share the study with various partner organizations. 26 Since the CPP clinic registry participants have less ethnic diversity than BC population estimates (Williams et al., 2019), we contacted the following organizations: Coalition of African, Caribbean and Black Nurses in B.C. (CACBN); Black Girl Collective; The National Congress of Black Women Foundation; Black Women Connect Vancouver; Black Lives Matter Vancouver; Vancouver Women's Health Collective; and Downtown Eastside Women's Centre. If organizations did not respond, one follow-up email was attempted. Successful contact was made with CACBN, The National Congress of Black Women Foundation, Black Women Connect Vancouver, and other researchers who were willing to distribute the study flyer throughout their networks. Participants were also invited to participate with a link to the survey/QR code through the primary investigator’s (PI) website and social media accounts [LinkedIn, Twitter, ResearchGate], additionally tagging the UBC School of Nursing, UBC Midwifery, UBC Family Practice, UBC OB/GYN, BC Midwives, Women’s Health Research Cluster, and Women’s Health Research Institute (WHRI) on relevant digital messaging that were shared regarding the study. 3.2 Ethical Considerations Approval to begin this research project was gained from the UBC Research Ethics Board. Harmonization of ethics with sites that will post the study invitation was sought. This study was determined to pose minimal risk to participants. However, reporting experiences of disrespectful care may be distressing for participants. Resources for psychological care and support were available upon completion of the survey. The PI’s discretionary research funds were used to provide three $100 CAD Amazon gift cards in a raffle. All those participating in the study were eligible to join the raffle, whether they 27 withdrew or completed the survey. There were no other predicted expenses associated with this research project. 3.2.1 Data Security Data was securely collected through the UBC-hosted Qualtrics platform and downloaded to the PI’s One-Drive. Only the PI, co-investigator, and study team members have access to the data. The PI also has access to the downloaded excel files for data aggregation, analysis, and reporting. The PI, co-investigator, and research team can access the database. They have all completed the TCPS tutorial. The Internet Protocol (IP) location address was turned off in Qualtrics. This software abides by the BC Freedom of Information and Protection of Privacy Act (FIPPA) because the data is securely stored and unable to be accessed by outside parties. This data is stored in Canada. Participants received a unique study code so that demographic information and survey answers cannot be traced back to them. The PI was responsible for the maintenance of all the data. Participants were invited to fill out an anonymous survey online using the Qualtrics platform. Participants were made aware that completion of the survey and submitting results for the study assumed consent for participation. The confidentiality of the data and participant privacy was maintained during data collection and analysis, including electronic files. All data provided was kept confidential, in strict accordance with Canadian Privacy Legislation. Only de-identified data (no names, only identification numbers) was included in databases, which were password-protected electronic files, accessible only by authorized computer login and password at the UBC School of Nursing. No information that discloses identity will be released or published. Data will be retained at least for the next five years until December 31, 2027. 28 On the first page and after submitting the survey, participants were presented with an online link to a separate page where they could enter their email address into a draw for one of three $100 Amazon gift cards. The email address was entered into a password-protected spreadsheet where each email address was numbered on a list. The excel spreadsheet with email addresses was encrypted and password protected. A random number generator was used to generate three numbers. The three $100 gift cards were emailed to the selected raffle winners, and the spreadsheet with the email addresses was then deleted. The email address that they provided was not matched to their response. 3.3 Measures The Mothers on Respect (MOR) index is a 14-item scale that service users use to rate their interactions with providers across 3 domains: 1) level of comfort with asking questions, accepting or declining options for care; 2) if they were treated poorly because of their racial, sexual, gender identities; and, 3) impacts on their willingness to engage in care planning (Vedam, Stoll, Rubashkin et al., 2017). The MORi demonstrated a Cronbach alpha of 0.85, 0.80, and 0.94 on the 3 samples it was tested on (Vedam, Stoll, Rubashkin et al., 2017). In a factor analysis, 13 index items were measured at greater than 0.55, and 1 index item at greater than 0.45 (Vedam, Stoll, Rubashkin et al., 2017). To adapt this index for use in endometriosis care, the only revisions made were in the instructions in how to use the index. The MORi originally states: Please tell us about your discussions with your doctor or midwife about your options for care (for example: prenatal testing, starting your labour, medications, where to give birth, newborn care, whether to have a cesarean, etc.). My answers describe my conversations or experiences with a: [check box option for the following options] Family doctor, 29 Obstetrician/OB-GYN doctor, Midwife, Not applicable, did not have a doctor or midwife. (Vedam, Stoll, Rubashkin et al., 2017, p. 204). For the purposes of this study, the instructions were: When considering your journey from the time you first experienced symptoms to receiving a diagnosis of endometriosis, choose the items that best reflect your experience. This can be about an interaction that you have had with any of your care providers or a general reflection on what your experience of care was. Throughout the index the words “pregnancy or birth care” were replaced with care (Vedam, Stoll, Rubashkin et al., 2017, p. 204). Other changes made included removing “my baby” from two questions and “maternity” from another (Vedam, Stoll, Rubashkin et al., 2017, p. 204). Since more patients with endometriosis work with doctors and nurses than doctors and midwives, “midwife” was changed to nurse (Vedam, Stoll, Rubashkin et al., 2017, p. 204). Since the MORi was not modified from its original structure, the scoring table developed with the original index was used to create a total score of respect for each participant (ranging from 14-84). The total score was interpreted with the Key, Level of Respect Experienced (by quartiles) (Appendix C). For the MORi, scores of 14-31 indicated very low respect, 32-49 indicated low respect, 50-66 indicated moderate respect, and 67-84 indicated high respect. The Mothers Autonomy in Decision Making (MADM) scale is a 7-item scale that people use to rate their interactions with care providers when discussing options for perinatal care. Likert-type item responses are summed for an overall autonomy score (ranging from 7-42). For the MADM, scores of 7-15 indicated very low patient autonomy, 16-24 indicated low patient autonomy, 25-33 indicated moderate patient autonomy, and 34-42 indicated high patient autonomy. MADM was adapted for use with endometriosis patients to evaluate their ability to exercise autonomy in interactions with the interdisciplinary team (Vedam, Stoll, Martin et al., 30 2017). The Cronbach’s alphas for all 3 samples were greater than 0.90 (Vedam, Stoll, Martin et al., 2017). In addition, the item correlations were greater than 0.7 for all 3 samples (Vedam, Stoll, Martin et al., 2017). The MADM scale was prepared for use in this study by modifying the instructions in how to use the scale. The instructions were originally: Please tell us about your discussions with your doctor or midwife about your options for care (for example: prenatal testing, starting your labour, medications, where to give birth, newborn care, whether to have a cesarean, etc.). My answers describe my conversations or experiences with a: [check box option for the following options] Family doctor, Obstetrician/OB-GYN doctor, Midwife, not applicable, did not have a doctor or midwife. (Vedam, Stoll, Martin et al., 2017, p. 5). These instructions were modified to: When considering your journey from the time you first experienced symptoms to receiving a diagnosis of endometriosis, choose the items that best reflect your experience of being able to make decisions about your care. This can be about an interaction that you have had with any of your care providers or a general reflection on what your experience of care was. The terms “pregnancy, labour and/or birth” were replaced with care (Vedam, Stoll, Martin et al., 2017, p. 5). The word “doctor or midwife” was replaced with doctor or nurse, and “maternity” was removed from a few questions (Vedam, Stoll, Martin et al., 2017, p. 5). The MADM scale retained the structure in which it was designed, and the results were interpreted within the Key, Level of Autonomy (by quartiles) (Appendix C). The instructions for how to complete the MOR index and MADM scale items were adapted for use in endometriosis care with permission and in consultation with Dr. Vedam (Appendix C). Dr. Vedam is a professor of midwifery, and Lead Investigator at the Birth Place Lab at UBC, and health equity research expert who developed these instruments. Since the scales 31 were not modified from their original structure and have already been psychometrically evaluated and tested, the modifications made to the scales were only in the instructions on how to use the scales and simple language changes. Validation of the instruments was completed through a peer-review process to assess for readability, timing, and clarity of items with the PRAB. Other topic experts were contacted to review the survey by email, but no additional feedback was gained. This research provided an opportunity to validate and test the reliability of the adaptations of these scales for use with people with endometriosis. Based on the feedback gained from the PRAB, described in section 3.1.4, three additional questions were added to the survey. Firstly, participants were asked: For the following questions please use the analog scale to indicate how respectful the care that you received from each provider was on the journey to receiving a diagnosis of endometriosis. [analog scale 1=least respectful care; to 10=most respectful care]. An analog scale is a visual scale where participants can choose a number that best represents their experience of care. The list of healthcare providers available to rank included nurse, nurse practitioner, midwife, family doctor, emergency doctor, gynecologist, endometriosis-specialized gynecologist. Participants were then asked if they perceived a difference in the care that they received based on their experience bringing a male partner/friend/family member to appointments: Has bringing a male partner/friend/family member to endometriosis appointments changed the way you were treated by your healthcare provider? Participants were able to select one of: yes, no, maybe, I am not sure. There was also an open-text box for further explanation. This question was added to the survey based on feedback gained from the PRAB. At the end of the questionnaire, an open-ended question was posed to participants: is there anything else that you would like to share with us or that you wish your healthcare provider 32 knew about your journey to being diagnosed with endometriosis? Were there any particularly notable experiences with any of your healthcare providers? This could be anything that you believe will improve the delivery of endometriosis care services. 3.4 Data Collection Data was collected through a UBC-hosted Qualtrics survey. This survey link was available as a QR code on posters at the identified clinic locations and provided as a link in the social media posts. The survey took participants 5-15 minutes to complete, bot protection was enabled in Qualtrics and successfully prevented bot activity. To prevent bot activity ‘bot detection’ and ‘multiple submissions’ were activated in Qualtrics. A question in the demographic questionnaire was used to check for suspicious bot activity, ensuring that the entered age of symptom onset was less than the entered age of diagnosis. Open-text questions were also utilized to ensure human activity. No suspicious activity was noticed after these measures were implemented. Only the PI, co-investigator, and study team members have access to the data. Survey participants consented to participate before beginning the survey and could stop the survey at any time. Sociodemographic information was collected at the beginning of the survey to inform the data analysis. The sociodemographic information collected included gender identity, sexual identity, age, confirmation of residency or receipt of endometriosis care services in BC, level of education obtained, racial identity, age of symptom onset, age of diagnosis of endometriosis, method of diagnosis, treatment for endometriosis, and any other health issues (Appendix C). The UBC-hosted Qualtrics survey link included a consent cover letter, demographic questionnaire, the adapted MORi and MADM scale, an analog question prompting participants to rate the level of respectful care received by each of their care providers, 1 question about 33 perceived male influence and an open text section for participants to share their experiences at the end of the survey (Appendix C) (Vedam, Stoll, Martin et al., 2017; Vedam, Stoll, Rubashkin et al., 2017). 3.5 Data Analysis A t-test was planned to compare the total score of respect (MORi) and autonomy (MADM) with sociodemographic characteristics. To demonstrate a medium effect size (0.5), an alpha of 0.05, and a power of 0.80, the ideal sample size is 64 participants in each group for a two-tailed t-test (Cohen, 1998; Polit & Beck, 2021). The independent variables are type of care provider and race; the dependent variable is the reported experience of respectful care. A total score of respect and autonomy were calculated for each participant. The total score for each participant was then recoded into a categorical level variable using the pre-determined quartiles published with the MORi and MADM (Appendix C). For the MORi, scores of 14-31 indicated very low respect, 32-49 indicated low respect, 50-66 indicated moderate respect, and 67-84 indicated high respect. For the MADM, scores of 7-15 indicated very low patient autonomy, 16-24 indicated low patient autonomy, 25-33 indicated moderate patient autonomy, and 34-42 indicated high patient autonomy. Mean MORi and MADM scores were stratified by sociodemographic characteristics, and a mean score of respectful care was calculated for each care provider based on the analog rating question. There was no feasible way to link the responses from this question to the participants mean score of respectful care since only 17 participants completed this section and there was no way to determine which care provider encounter the participant was reflecting upon when they completed the MORi or MADM scale. 34 The percentage of participants who responded yes, no, maybe, or I am not sure, to the question about perceived male influence on healthcare interactions were compared. The open-ended response option for this question was used to contextualize the responses. The responses were grouped based on if the participant had selected yes, no, maybe, or I am not sure to understand why the participant may have selected their respective answer. Qualitative data obtained from the open-ended question was interpreted to contextualize the quantitative findings of the study and corroborate the results. Since this study is quantitative, a partial thematic analysis was done to inform the quantitative findings of the study. Participant quotes were grouped based on themes in the literature: provider education gaps, difficulty getting a diagnosis, dismissal or normalization of pain and negative emergency room experiences. 3.6 Chapter Summary This chapter summarizes the methodological approach utilized in this study. A description of the study design, setting, sample, inclusion and exclusion criteria, recruitment, PRAB, data collection, measures, data analysis and ethical considerations was provided. The cross-sectional design was selected since that was the same design utilized in a significant portion of the literature about endometriosis. The MORi and MADM were selected because they provide a way to analyze respect and autonomy in a similar practice setting that previously lacked a way to measure these concepts, are reliable and valid tools, and have demonstrated the negative impact that disrespect can have on patient outcomes. The PRAB feedback was extremely valuable to the formation of this study and will be discussed further in the discussion section. Chapter 4 will detail the results that were obtained through this study. 35 Chapter 4: Results 4.1 Introduction The results of the study are presented in this chapter. Demographic information of the study sample, people with endometriosis in BC are also presented (N=112). This chapter will discuss the plan for statistical analysis and the outcomes and limitations of the data analysis after the data was collected. Results were also interpreted within the predefined quartiles indicated in Appendix B (Vedam, Stoll, Martin et al., 2017; Vedam, Stoll, Rubashkin et al., 2017). The responses gained from the open-ended questions are also included to contextualize the results of this study. 4.2 Study Sample Participants completed the survey between 6 September 2022 - 24 October 2022. The survey was open for participants to complete between 1 September 2022 – 1 January 2023. Among the 124 participants who completed the survey, 12 participants were not included in the analysis due to not meeting the inclusion criteria (n=1) or leaving a large percentage of the survey incomplete (n=11). 4.3 Online Qualtrics Survey 4.3.1 Demographic Data Table 1 provides demographic information about the sample population. Since the data was primarily collected through the BCWH CPP patient registry, the sample reflects that of the population accessing care through BCWH CPP clinic. The sample is 100% biologically female with diversity in gender identity (11.6% gender diverse, 88.4% identify as a cis woman) and sexual orientation (28.6% queer, 71.4% identify as heterosexual). Approximately 80.3% of the sample had completed some form of post-secondary education, ranging from a college degree or 36 certificate to a graduate level degree. Seventy-five percent of the sample identified as white which greatly limited the ability of this study to analyze the experience of care for different races. Most patients sought care for endometriosis for pain and symptom management (75.9%). Since the primary way to diagnose endometriosis historically was via surgery, most of the patients reported undergoing a diagnostic surgery (73.2%). Notably, the mean age of participants in the sample is 37.16, ranging across the lifespan between ages 19-60. The average time between onset of symptoms and receiving a diagnosis of endometriosis for this sample population was 11.52 years. 37 Table 1 Demographic Characteristics of Study Sample (N=112) Demographic Characteristics Frequency % Biological Sex a Female 112 100 Gender Identity b Woman Non-binary Transgender Man Gender Fluid Prefer not to Answer 99 6 1 1 1 88.4 5.6 .9 .9 .9 Sexual Orientation c Asexual Bisexual Heterosexual Pansexual Queer Sexually Fluid I do not identify with any option provided Prefer not to say 1 17 80 3 3 1 1 1 .9 15.2 71.4 2.7 2.7 .9 .9 .9 BC Resident/Receive Care in BC 112 100 Education d Grade 10 High School Some university/college College program/certificate Undergraduate degree Graduate degree 3 6 13 22 41 27 2.7 5.4 11.6 19.6 36.6 24.1 Racial Identity e White Arab Chinese Filipino Japanese Korean Latin American South Asian 84 1 1 1 1 1 2 4 75 .9 .9 .9 .9 .9 1.8 3.6 38 Demographic Characteristics Frequency % West Asian Indigenous to Canada Biracial Not listed 1 3 11 1 .9 2.7 9.8 .9 Primary Reason for seeking Endometriosis Care Pain/Symptom Management Fertility Treatment Other Pain/Symptom Management and Fertility Treatment 85 5 11 11 75.9 4.5 9.8 9.8 Method of diagnosis of Endometriosis Surgery Imaging Physical Exam Other 82 26 2 1 73.2 23.2 1.8 .9 Types of Treatment Received Surgery Hormone Therapy Allied Health (Physiotherapy, acupuncture, etc.) Symptom Management Other None 92 82 58 71 16 2 82.1 73.2 51.8 63.4 14.3 1.8 Age M = 37.16 SD = 8.87 Age of Symptom Onset M = 17.56 SD = 6.93 Age of Diagnosis M = 29.15 SD = 7.98 Years between Symptom Onset and Age of Diagnosis M = 11.52 SD = 7.96 Note: Missing data for biological sex = 4; missing data for gender identity=4; missing data for sexual orientation = 5. a Multiple-choice options included: male, female, intersex, prefer not to answer. 39 b Multiple-choice options included: woman, man, transgender woman, transgender man, gender-fluid, non-binary, two-spirit, I identify as [open text], I prefer not to answer. Select all that apply question. c Multiple-choice options included: asexual, bisexual, gay, straight/heterosexual, lesbian, pansexual, queer, questioning, two-spirit, I don’t identify with any option provided, I prefer not to answer, I identify as [open text]. d Multiple-choice options included: Grade 7, Grade 10, High school, some university/college, college program/certificate, undergraduate degree, graduate degree, prefer not to answer. e Multiple-choice options included: Arab, African, Caribbean, Black, Chinese, Filipino, Japanese, Korean, Latin American, South Asian (East Indian, Pakistani, Sri Lankan, etc.), Southeast Asian (Vietnamese, Cambodian, Laotian, Thai, etc.), West Asian (Iranian, Afghan, etc.), White, Indigenous to Canada, Indigenous to another region, Not listed, I prefer not to answer, I identify as [open text]. Select all that apply question. 40 4.3.2 Frequencies Table 2 and 3 describe the frequencies of participants’ response to the primary survey questions from the MORi and MADM scale (Vedam, Stoll, Martin et al., 2017; Vedam, Stoll, Rubashkin et al., 2017). These results represent normally distributed data. The responses were used to calculate a total score for each participant, as designed by the MORi and MADM tools (Vedam, Stoll, Martin et al., 2017; Vedam, Stoll, Rubashkin et al., 2017). The average total score for each participant indicated low-moderate perceptions of respectful care and a range of perceptions of autonomy in decision making. 41 Table 2 Frequency of Responses for Respect Questionnaire (n=106) Item 1 Strongly Disagree n (%) 2 Disagree n (%) 3 Somewhat Disagree n (%) 4 Somewhat Agree n (%) 5 Agree n (%) 6 Strongly Agree n (%) Overall while making decisions about my care: (select one answer for each statement) 1. I felt comfortable asking questions. 8 (7.1) 22 (19.6) 19 (17.0) 23 (20.5) 28 (25) 12 (10.7) 2. I felt comfortable declining care that was offered. 15 (13.4) 21 (18.8) 14 (12.5) 26 (23.2) 26 (23.2) 8 (7.1) 3. I felt comfortable accepting the options for care that my doctor or nurse recommended. 4 (3.6) 19 (17.0) 21 (18.8) 37 (33.0) 25 (22.3) 6 (5.4) 4. I felt pushed into accepting the options my doctor or nurse suggested. 7 (6.3) 27 (24.1) 14 (12.5) 21 (18.8) 28 (25.0) 15 (13.4) 5. I chose the care options that I received. 5 (4.5) 8 (7.1) 21 (18.8) 28 (25.0) 31 (27.7) 19 (17.0) 42 Item 1 Strongly Disagree n (%) 2 Disagree n (%) 3 Somewhat Disagree n (%) 4 Somewhat Agree n (%) 5 Agree n (%) 6 Strongly Agree n (%) 6. My personal preferences were respected. 9 (8.0) 9 (8.0) 23 (20.5) 28 (25.0) 30 (26.8) 13 (11.6) During my care I felt that I was treated poorly by my doctor or midwife because of: (select one answer for each statement) 7. My cultural preferences were respected. 2 (1.8) 4 (3.6) 10 (8.9) 20 (17.9) 52 (46.4) 23 (20.5) 8. My race, ethnicity, cultural background, or language. 60 (53.6) 34 (30.4) 4 (3.6) 8 (7.1) 4 (3.6) 1 (.9) 9. My sexual orientation or gender identity. 56 (50) 36 (32.1) 3 (2.7) 8 (7.1) 3 (2.7) 5 (4.5) 10. My type of health insurance or lack of insurance. 61 (54.5) 36 (32.1) 5 (4.5) 4 (3.6) 2 (1.8) 2 (1.8) 11. A difference of opinion with my caregivers about the right care for myself. 23 (20.5) 25 (22.3) 4 (3.6) 28 (25.0) 11 (9.8) 18 (16.1) 43 Item 1 Strongly Disagree n (%) 2 Disagree n (%) 3 Somewhat Disagree n (%) 4 Somewhat Agree n (%) 5 Agree n (%) 6 Strongly Agree n (%) During my care I held back from asking questions or discussing my concerns because: (select one answer for each statement) 12. My doctor or nurse seemed rushed. 6 (5.4) 14 (12.5) 7 (6.3) 24 (21.4) 33 (29.5) 27 (24.1) 13. I wanted care different from what my doctor or nurse recommended. 8 (7.1) 16 (14.3) 12 (10.7) 25 (22.3) 32 (28.6) 17 (15.2) 14. I thought my doctor or nurse might think I was being difficult. 8 (7.1) 15 (13.4) 6 (5.4) 28 (25.0) 27 (24.1) 27 (24.1) 44 Table 3 Frequency of Responses for Autonomy Questionnaire (n=106) Item 1 Strongly Disagree n (%) 2 Disagree n (%) 3 Somewhat Disagree n (%) 4 Somewhat Agree n (%) 5 Agree n (%) 6 Strongly Agree n (%) Please describe your experiences with decision making during your care. (Select one option for each) 1. My doctor or nurse asked me how involved in decision making I wanted to be. 39 (34.8) 20 (17.9) 21 (18.8) 20 (17.9) 8 (7.1) 3 (2.7) 2. My doctor or nurse told me that there are different options for my care. 13 (11.6) 24 (21.4) 18 (16.1) 31 (27.7) 13 (11.6) 13 (11.6) 3. My doctor or nurse explained the disadvantages/ advantages of the care options. 13 (11.6) 20 (17.9) 16 (14.3) 30 (26.8) 19 (17.0) 14 (12.5) 4. My doctor or nurse helped me understand all the information. 11 (9.8) 22 (19.6) 22 (19.6) 31 (27.7) 17 (15.2) 9 (8.0) 5. I was given enough time to 12 (10.7) 17 (15.2) 17 (15.2) 31 (27.7) 25 (22.3) 10 (8.9) 45 Item 1 Strongly Disagree n (%) 2 Disagree n (%) 3 Somewhat Disagree n (%) 4 Somewhat Agree n (%) 5 Agree n (%) 6 Strongly Agree n (%) thoroughly consider the different care options. 6. I was able to choose what I considered to be the best care options. 10 (8.9) 12 (10.7) 22 (19.6) 36 (32.1) 24 (21.4) 8 (7.1) 7. My doctor or nurse respected my choices. 6 (5.4) 14 (12.5) 15 (13.4) 39 (34.8) 22 (19.6) 16 (14.3) 46 4.3.3 Results of MORi The MORi was utilized to assess how patients with endometriosis report their interactions with providers when reflecting upon their journey to receiving a diagnosis of endometriosis. To maintain the integrity of this scale, the predefined quartiles provided were used to assign a category labelling the degree of respect experienced for each response (Appendix B). Fifty-eight percent (58%) of the 106 participants reported scores in the low respect category (n = 65) (scores of 32-49) and 36.6% of participants reported scores in the moderate respect category (n = 41) (scores of 50-66). Six participants (5.4%) could not be scored due to an incomplete response. No participants scored very low respect or high respect scores. The mean score of respectful care was 48.41 (SD = 5.01), a score of low respect. These results are presented in Figure 1. Figure 1 Total Levels of Respectful Care 47 4.3.4 Results of MADM The MADM scale was utilized to assess how much autonomy patients have in decision making surrounding their endometriosis care. The predefined quartiles indicated in Appendix B was utilized to interpret the scores of this survey tool. Twenty-one participants (18.9%) reported scores of very low autonomy (scores of 7-15), 37 (33.3%) reported scores of low autonomy (scores of 16-24), 39 (34.8%) reported scores of moderate autonomy (scores of 25-33), and 14 (12.6%) reported scores of high autonomy (scores of 34-42). The mean score for total autonomy is 24.10 (SD=8.35), which is indicative of low autonomy. These results are presented in Figure 2. Figure 2 Total Levels of Autonomy 4.3.5 T-Test The plan for analysis was to utilize a two-tailed t-test to compare groups of participants based on race and mean scores of respectful care and autonomy in decision making. 48 Unfortunately, the insufficient sample size for each race made this analysis not possible. To complete this analysis, at least 64 participants from a minimum of 2 races would need to be included. Given the sample size limitations, participants could not be compared based on any other sociodemographic characteristics. While a comparison could not be made between subgroups due to insufficient sample size and limited power, the median score of respect and autonomy for each sociodemographic subgroup are presented in Table 4. These results should be interpreted with caution since they are not representative of enough participants’ experiences to adequately represent each subgroup population. However, for those with results significantly different from the median score it may represent an area for future research exploration. All gender identities reported a median score of respect that was equivalent to or greater than the median score of respect for the full sample (48.00). The median score of autonomy for non-binary (20.50), transgender man (22.00), gender fluid (23.00) and prefer not to answer (8.0) participants were all below the median score of autonomy for the total sample (24.00). Asexual (46.00) and I do not identify with any sexual orientation options provided (47.00) participants both reported scores of respect less than the median for the total population (48.00). Pansexual (23.00), I do not identify with any sexual orientation options provided (17.00) and prefer not to say my sexual orientation (8.0) participants reported scores of autonomy less than the median score of the total population (24.00). Those with a Grade 10 education (41.00) and a college education (47.50) reported scores of respect that were lower than the median of the total population (48.00). Individuals with a grade 10 education (17.00), high school education (22.50), some university/college education (23.00), or an undergraduate degree (23.00) reported lower scores of autonomy than the median of the total population (24.00). The participants who 49 identified with the following racial identities reported scores of respect lower than the median of the total population (48.00) included: Arab (42.00), Korean (43.00), South Asian (46.00), West Asian (43.00), Indigenous to Canada (45.00), not listed (47.00). The median score of autonomy (24.00) for the following racial identities were lower than the median for the total population: West Asian (14.00), not listed (17.00). Table 4 Median Score of Respect and Autonomy based on Demographic Characteristics Demographic Characteristic Frequency % Median Score of Respect (Range) Median Score of Autonomy (Range) Gender Identity Woman Non-binary Transgender Man Gender Fluid Prefer not to Answer 99 6 1 1 1 88.4 5.6 .9 .9 .9 48.00 (38-61) 51.50 (43-55) 50.00 (0) 48.00 (0) 52.00 (0) 24.50 (7-42) 20.50 (13-34) 22.00 (0) 23.00 (0) 8.0 (0) Sexual Orientation Asexual Bisexual Heterosexual Pansexual Queer Sexually Fluid I do not identify with any option provided Prefer not to say 1 17 80 3 3 1 1 1 .9 15.2 71.4 2.7 2.7 .9 .9 .9 46.00 (0) 49.00 (42-54) 48.00 (38-61) 48.00 (48-50) 50.00 (49-55) 48.00 (0) 47.00 (0) 52.00 (0) 26.00 (0) 25.00 (13-34) 24.00 (7-42) 23.00 (22-24) 24.00 (20-31) 30.00 (0) 17.00 (0) 8.0 (0) Education Grade 10 High School Some university/college College program/certificate Undergraduate degree Graduate degree 3 6 13 22 41 27 2.7 5.4 11.6 19.6 36.6 24.1 41.00 (40-47) 49.00 (40-52) 50.00 (45-61) 47.50 (39-59) 48.00 (38-59) 48.50 (38-59) 17.00 (7-31) 22.50 (14-38) 23.00 (12-35) 29.00 (8-42) 23.00 (7-41) 24.00 (8-36) Racial Identity White 84 75 48.00 (38-61) 24.00 (7-42) 50 Demographic Characteristic Frequency % Median Score of Respect (Range) Median Score of Autonomy (Range) Arab Chinese Filipino Japanese Korean Latin American South Asian West Asian Indigenous to Canada Biracial Not listed 1 1 1 1 1 2 4 1 3 11 1 .9 .9 .9 .9 .9 1.8 3.6 .9 2.7 9.8 .9 42.00 (0) 54.00 (0) 54.00 (0) 49.00 (0) 43.00 (0) 57.00 (57-57) 46.00 (46-50) 43.00 (0) 45.00 (44-57) 51.50 (43-58) 47.00 (0) 32.00 (0) 27.00 (0) 23.00 (0) 32.00 (0) 27.00 (0) 32.00 (32-32) 27.00 (14-41) 14.00 (0) 31.00 (12-32) 24.00 (7-36) 17.00 (0) Since the analog rating of healthcare providers question subset was not asked in a way that linked the rating to the results provided throughout the rest of the survey, there was no way to statistically analyze if the type of healthcare provider influenced the level of respectful care received. These results will be presented separately in section 4.3.6. 4.3.6 Analog Ratings of Healthcare Providers A limited number of participants completed this section (n=17). Since such a small percentage of participants completed this section of the survey, the results should be interpreted with caution. Nurses and endometriosis-specialized gynecologists were both reported as a 9.0 out of 10.0 on the analog scale, indicating that participants reported very respectful care from these providers. Table 5 Analog Rating of Perceived Respect from Healthcare Providers (n = 17) Type of Healthcare Provider Median Range Nurse 9.0 2.0 – 10.0 Nurse Practitioner 7.0 0.0 – 10.0 51 Type of Healthcare Provider Median Range Midwife 5.0 0.0 – 10.0 General Practitioner/Family Doctor 4.0 0.0 – 10.0 Emergency Room Physician 5.0 0.0 – 10.0 Gynecologist 7.0 1.0 – 10.0 Endometriosis-Specialized Gynecologist 9.0 0.0 – 10.0 4.3.8 Perception of Male Influence on Care Received The answers to this question were divided; 36.6% noticed no difference in the care they received, 19.6% perceived a difference in the care they received, while 32.1% were unsure or potentially reported a difference in care. This question also included an open-text box where participants could comment on why they perceived their care to be different when a male was present. Several participants said that specifically in emergency-room settings they are taken more seriously with a male partner present. Another participant said “they are less aggressive and dismissive when someone else is present” suggesting that the presence of another person, not males specifically, improves the experience of care. Other participants echoed this statement and indicated that having another person present at appointments was helpful if they had difficulty articulating their experiences or needed to advocate for themselves. A different participant also commented that “they asked my husband’s opinion on me getting a hysterectomy which was not appropriate” suggesting that a provider looked not to the patient, but to their male partner, in a moment of decision-making for the female patient’s body. Other participants mirrored this sentiment: “my first surgeon did not speak to me, just [to] my husband” or “I was single and unmarried during my journey. I wanted a 52 hysterectomy sooner and often feel like if I wasn't single maybe I would have been given it”. Some participants mentioned that the appointment shifted from pain management to fertility care in the presence of their partner. A few participants indicated that their partner was also treated negatively at appointments. One participant described an experience of violation: “I once had a male dr just shove his giant fingers inside me and then tell me I was fine. I felt violated. My husband was in the room with me. I was only 18 at that time”. Of the participants who were unsure of if bringing a male partner to appointments would have made a difference, 15% indicated that they had never brought a male to the appointment. Table 6 Perceptions of Influence of bringing a male partner/friend/family member to Endometriosis Appointments (n = 99) Frequency Percentage Yes (perceived change in the care received) 22 19.6 No (no perceived change in the care received) 41 36.6 Maybe (potential change in the care received) 9 8.0 I am not sure (unsure if change in the care received) 27 24.1 4.4 Qualitative Data: Open Ended Responses This question generated diverse and robust responses from most of the participants. While a thematic analysis could not be completed within the scope of this study, the responses from participants were sorted into categories based on the current literature. Many participants reported experiences of dismissal by healthcare providers or normalization of their pain: 53 When I first started bringing up my concerns [with] my family doctor, she told me it was all in my head. It was only stress. Nothing was wrong with me (nothing was observed in an ultrasound so therefore nothing was wrong). I was so afraid of going to the doctor that my spouse had to come with me to every appt after that. She made me feel like I didn't know my body or understand how I was feeling/have a choice. The dismissal experienced by some participants overlapped with experiences of discrimination: My gender identity changed after receiving my endometriosis diagnosis. Which led to me needing to change my family doctor. He was very patronizing about my pain and low mood relating to endometriosis. I did not feel comfortable seeing him. The specialist who diagnosed me made a few comments about how fertile I was for having endometriosis. I do not want children, and the idea of being pregnant is horrifying to me. The difference in opinion about how "good" it was that I was fertile made me afraid to ask for care options that would impact my fertility. After the change in my gender identity, I am having an even harder time advocating for my care. It is hard to trust that I am being listened to when my pronouns are being ignored. The average time from symptom onset to diagnosis for the study participants was 11.52 years. Unsurprisingly, many participants described difficulty getting a diagnosis: I do not feel that the current practice of medicine is in any way beneficial to women. I feel that all women’s health is disturbingly under-researched and the lack of basic knowledge of women’s anatomy is appalling. It took me almost 24 years of excruciating, devastating and embarrassing symptoms that fully ruined my life, and affected all my life choices before I was diagnosed. For years I was telling my family doctor I suspected I had endo and was dismissed and shamed for not having children. I felt held hostage by 54 my family doctors … My first family doctor refused to listen to me. He told me I was a hypochondriac and a drug seeker and he became enraged when I told him if he gave me any medication that worked, I wouldn’t be coming back so often. He never gave me any pain medication ever and constantly pushed me to take SSRI’s because I was, in his opinion “just depressed”. He dismissed my cramps and heavy periods and said the only thing I could do was take birth control. My GI symptoms were “just stress”. My food allergies were “invented”, even after I wore him down and saw an allergist who confirmed them. Any time I went to emergency, they’d see his notes and the whole tenor of the appointment would change and the criticism would come out. I felt exhausted from constantly trying to advocate for myself in a system that is not set up to support patients and creates an environment ripe for confirmation bias. Difficulty finding a healthcare provider who understands and empathizes with the totality of the impact that endometriosis has on people’s lives can be extremely consequential. The most pressing theme that emerged from this dataset was the number of participants who described a lack of provider education as the reason their symptoms were dismissed, or their diagnosis was delayed. One participant described: I wish more people knew about endometriosis. My GP told me that all my pain ‘was in my head’ for years and referred me to a psychiatrist. This not knowing if I was making up these symptoms really messed with me and caused significant distress and distrust in myself. It led to depression and problems in my relationship with myself and others. In alignment with the known gap in provider education, many participants reported that said providers would recommend birth control as their only method of symptom control: 55 I wish that when I first complained of pain that I wasn’t quickly rushed to taking birth control pills as a form of pain management. Then once again complained of pain in my 20’s, when my husband and I were trying to start a family and once again prescribed birth control - which is a little ironic since that’s the opposite thing we were trying to do. Many participants described the emergency room as one of the most traumatic settings: Healthcare providers don’t seem to believe when we’re in pain. Going to the ER to get help and being dismissed …. having my family dr throw her hands in the air saying “ I don’t know what to do with you! Go see a psychiatrist, etc. The majority of participants depict general disrespect and negative care experiences on the journey to receiving a diagnosis of endometriosis. A few participants described the magnitude of this experience as so significant that it caused them to experience suicidal ideation. One participant explained that they experienced “shocking homophobia” when seeking care. Another participant described being told that there was a cure for endometriosis by a healthcare provider, only for the healthcare provider to clarify that the “cure” was getting pregnant; the participant was a 19-year-old university student not seeking fertility counsel. A few participants described experiences in which they were given little ability to exercise autonomy over their care: My Gynecologist … asked me if I wanted to have children. I said likely not given my current poor health and she responded "Good. Because you probably won't be able to have them anyway", and then proceeded to give me an information package on total hysterectomy to read for five minutes while she got the consent forms for surgery. I felt paralyzed and left the appointment upon which I sat in my car and broke down. She did not ask me if I had any questions or what I wanted. It was a horrible, horrible experience. 56 The anecdotes of care shared by these participants are a powerful narrative to consider in interpreting the results of this study. The impact of disrespectful care extends beyond the healthcare setting and greatly influences the quality of life and mental health of people living with endometriosis. As eloquently suggested by a participant, healthcare providers need to do more to address these gaps in care: Listen to your patient. Trust their pain, their level of pain and understand every single woman [person] is different, do not follow a guideline, be open minded and know that people’s bodies react differently. Also learn about endometriosis, study it, believe it. The results of this study show that patients with endometriosis experience low levels of respect and ability to exercise autonomy in decision making. The responses to the open-ended question provide greater insight into how low measures of respect and autonomy influence the lives and wellbeing of individual patients. The next section will discuss the results of this study within the context of the current literature to identify areas for future research, clinical practice, and education. 57 Chapter 5: Discussion 5.1 Summary This study aimed to understand if people with endometriosis receive respectful care throughout their journey to receiving a diagnosis of endometriosis. The secondary aim was to assess the relationship between experience of care, type of care provider and race. A cross-sectional descriptive approach was taken to collect data through an online survey. Participants who live or receive care services in BC, were 19 years old and had a self-reported diagnosis of endometriosis were invited to participate. Participants were recruited primarily through the BCWH CPP clinic. Since service users at this clinic lack identity diversity, participants were also recruited through alternative organizations. To measure respect and autonomy in endometriosis, tools (MORi and MADM) that have been validated to successfully measure the respective concepts in childbirth were adapted for use. Participants also assigned each type of healthcare provider a score between 0-10 to indicate how respectful their care interactions had been. Another question prompted participants to reflect upon their interactions with healthcare providers and how bringing a male to those encounters may have changed the care that they received. The final question was an open-text box for comments to share additional information. 5.2 Discussion of Results The mean score of respect was 48.41 (SD = 5.01). Utilizing the MORi pre-defined quartiles to classify scores into very low, low, moderate, and high experiences of respectful care, 48.41 is a score of low respect. The mean score of autonomy, or ability to participate in shared decision-making with healthcare providers is 24.10 (SD = 8.35). Utilizing the predefined quartiles to measure autonomy, scores are divided by very low, low, moderate, and high scores of autonomy. The mean score in this sample, 24.10, is representative of low patient autonomy. In a 58 study by Simonsen et al. (2020), patient autonomy was measured for patients with endometriosis with an alternate tool, this established patient autonomy as a necessary component of respectful care delivery. Rowe et al. (2021) studied perceptions of care in healthcare providers and patients with endometriosis and identified respect as a key pillar of care. Respect was also identified as an essential component of treating the patient as the expert of their body and experience (Rowe et al., 2021). Within one of the open-text dialogues, a few participants reported experiences where the healthcare provider looked to their partner instead of them for consent for a procedure. Respect and ability to exercise autonomy remain pertinent issues within the delivery of endometriosis care services. Within the open-text question, many participants also reported discouraging and disrespectful care experiences. As Bohren et al. (2015) identified, “failure to meet professional standards of care, poor rapport between women and providers, and health system conditions and constraints” (p. 1) are key elements of disrespectful care. A significant number of the responses to the open-ended question was the attribution of poor care experiences to a deficit of provider education, an example of a failure to meet professional standards of care. As-Sanie et al. (2019) identified that the lack of guidelines and education for healthcare providers about endometriosis as an attributable cause for delayed diagnosis and negative care experiences. Grundström et al. (2018) and Rowe et al. (2021) also recognize that empathetic and respectful care could mitigate the negative impact of provider education deficits on patients. A similar phenomenon has been observed for patients with arthritis, where the incorporation of patient-centered care drastically improved patient outcomes and ability to exercise autonomy (Voshaar et al., 2015). The absence of respect in care leads to negative patient outcomes and increased costs for the healthcare system. The annual costs of healthcare for people with endometriosis in the United States (US) is 59 2.6-8 times the cost of healthcare for a woman without endometriosis (As-Sanie et al., 2019; Estes et al., 2020). Historically, endometriosis symptoms were attributed to female hysteria and dismissed as not having a physiological cause (Wright, 2019; Young et al., 2019). This history allowed symptoms to be ignored by healthcare providers for decades. Since the symptoms were being ignored, there was no reason for researchers to begin to study the disease. Research for women and gender diverse individual’s health has largely focused on reproduction and childbirth, to fit within a woman’s predefined societal role. While we have made significant strides in attempting to understand and treat endometriosis, the provider education gaps, and dismissal of patient symptoms remain a way that the healthcare system controls and decreases women and gender-diverse individuals’ ability to exercise autonomy. Participants varied in their rating of each healthcare provider quite significantly. The median rating for nurses and endometriosis-specialized gynecologists were both rated as a 9.0 out of 10.0, indicating high scores of respect. Emergency room physicians were rated a 5.0, this corresponds to the open-ended responses gained from participants since many participants described experiences of being dismissed, ignored, and disrespected. The decreased capacity of emergency room physicians to help individuals with chronic pain likely contributes to the negative experiences reported. Family doctors or general practitioners were rated a 4.0 (very poor respect) which strongly corresponds to the anecdotal experiences of patients advocating for a diagnosis of endometriosis within the healthcare system (As-Sanie et al., 2019; Rush & Misajon, 2018; Sims et al., 2021; Wright, 2019; Zanden et al., 2020). The PRAB shared that they have experienced differences in the quality of care they received when they brought a male partner or relative with them to appointments. The PRAB 60 suggested that investigating whether this perception was shared with others who have endometriosis may be helpful to uncover different subversive forms of disrespect in care encounters. The answers were very divided among participants. Almost 20% of participants definitively stated there was a difference in care received and shared personal stories to clarify. Participants were otherwise divided; 36.6% perceived no change, 8% thought there was a potential change and 24.1% were unsure. Among those who were unsure, 15% had never brought a male to an appointment before. Responses could also be altered by the way that internalized patriarchal structures manifest at an individual and community level. Further research is needed to investigate this relationship. This relationship could be impacted by the gender of healthcare providers or a healthcare providers subconscious bias to take male-presenting patients more seriously than female-presenting patients. Greenwood et al. (2018) found that having the same gender identity as a healthcare provider improves patient morbidity and mortality rates with acute health events. These results were analyzed through a longitudinal case-review of patients accessing emergency care in Florida (Greenwood et al., 2018). 5.3 Strengths This is the first study to quantitatively measure the experience of respectful care and ability to exercise autonomy in decision making for patients living with endometriosis in BC. Other strengths included the design of the study which was evidence-based and cross-sectional, capturing the phenomenon being studied at one moment in time, to replicate the conditions of the original use of the MORi survey and gaps identified by previous researchers on care of patients with endometriosis. Lastly, the reliability and validity of the survey tools were a strength and were selected due to their relevancy to the related discipline of reproductive care, and proven 61 testing for reliability and validity in perinatal populations. These instruments have generated significant findings that are clinically relevant. An additional strength of the study was the information provided in the open-text question. This question generated robust and thoughtful responses that provided a patient narrative to contextualize the quantitative reports of low respect and autonomy. Finally, the consultation of the PRAB was a strength of this study as it ensured that the research was relevant to the population being studied. 5.4 Limitations The primary limitation of this study was the limited power and sample size. The analysis of each participant’s total score of respect and ability to exercise autonomy in relationship to sociodemographic variables like race, sexual orientation, gender identity and education could not be completed due to insufficient power (n = 112). A plausible explanation for the limited sample diversity was the facilitation of primary recruitment from a clinic registry with less diversity compared to the population as a whole. While attempts were made to contact organizations with more diverse populations, many of these organizations either did not respond to the invitation to participate or had a very small amount of clientele who would fit the inclusion criteria of the study. This study took place during the Covid-19 pandemic in BC, and any perceived or actual effects of the pandemic should be taken into consideration while extrapolating the study findings. Since the survey was administered online, it is possible that it was not accessible to those who were not connected with the targeted organizations in an online format or lacking in digital literacy. In the future, in-person recruitment at clinics with increased diversity may encourage participation and survey completion. 62 5.5 Nursing Implications The reported healthcare provider education deficit as demonstrated by the literature and noted in the current study is not specific to physicians. Nursing curriculum in Canada typically does not include extensive training on gynecology or endometriosis. Respectful care is a key component of nursing services, and it is vital that all patients are treated with respect. As Batko (2020) established, patients with other chronic health conditions, like arthritis, have worsened outcomes when respect is absent from their care. In support of following a feminist approach to care, nurses have a responsibility to promote gender-based and reproductive-rights equity within the healthcare system. Nurses must also be aware of the increased barriers to care that racialized patients may face when navigating the healthcare system (Bougie et al., 2022). Historically endometriosis was thought to only affect white women and racialized women struggle to have their pain legitimized by healthcare providers, thus increasing their time to diagnosis and symptom burden (Bougie et al., 2022). Nurses need to be aware of these challenges so that they can ask patients about their symptoms, validate their experience, and advocate for the patient. Evaluating how nurses can care for patients in accordance with best practice guidelines prevents nursing burnout and improves patient outcomes. This research gives nurses insight into the lives of their patients and subsequently can improve nursing practice if incorporated into clinical settings. Nurses are positioned as advocates for patients, if nurses have a strong understanding of endometriosis they can advocate for timely diagnosis and effective treatment. Most patients with endometriosis have a delayed diagnosis of 5-7.9 years, this could be drastically reduced if nurses were able to recognize signs and symptoms and advocate for the patient (Rush & Misajon, 2018). However, family doctors also need to pursue education about endometriosis since their scope of practice includes making referrals to specialist providers and 63 ordering diagnostic tests. If more family doctors had this education, less patients would need to visit multiple providers in pursuit of a diagnosis, saving the healthcare system money overall (As-Sanie et al., 2019). One of the primary reasons for a delayed diagnosis is healthcare providers’ dismissal of patients’ symptoms (As-Sanie et al., 2019; Sims et al., 2021; Wright, 2019; Zanden et al., 2020). Another reason for delayed diagnosis is the stigma associated with menstruation that prevents patients from seeking care (Gupta et al., 2021). Educational initiatives should be developed to generate respect for the patient experience and destigmatize menstruation. We found in the analog rating of healthcare providers; nurses were tied with endometriosis-specialized gynecologists as a 9.0 out of 10.0. While this is reassuring that nurses are successfully providing respectful care services, nurses and endometriosis-specialized gynecologists are the only type of providers at BCWH CPP. It is possible that these ratings are representative of interactions with these specialized care providers instead of those in the community who do not have the same specialized training. Expansion of the nursing role related to endometriosis service provision is a key priority for nursing education curriculum. 5.6 Future Directions 5.6.1 Research Research exploring the experience of endometriosis is essential to demonstrate the disrespect and challenges people face in navigating the healthcare system. Revealing the challenges that people experience will provide insight into how nurses can better care for patients and advocate for changes within the healthcare system to improve care outcomes. Research is an essential tool in improving the delivery of healthcare services. Specifically, research related to 64 the experience of endometriosis pain and the frequent dismissal of period pain is necessary (Leuenberger et al., 2022). The findings of this study indicate that patients with endometriosis experience low levels of respect and ability to exercise autonomy in their care. This study should be used to inform further research that can generate the greater statistical power that is necessary to conduct an analysis based on race, gender identity, sexual orientation, and other sociodemographic variables. The PRAB suggested that we compare the results of this study to people with endometriosis symptoms who do not have a diagnosis of endometriosis, we acknowledged this would be valuable information and yet it fell outside of the scope of this present study. Further research would be helpful to investigate this relationship. There were some observed variabilities in responses to the question about perceived influence of male involvement in the quality of care received. The PRAB suggested the inclusion of this survey question based on their lived experience. Further research to investigate the nature of this relationship is recommended. Robust qualitative data emerged from the open-ended question in the survey. A complete thematic analysis was outside of the design of this study. However, it did demonstrate that respect and autonomy are topics of significance for people living with endometriosis and should be studied further using a qualitative design. 5.6.2 Education Education is the key to improving the provision of endometriosis care services. In discussion with the PRAB, it was reported that an ongoing issue for patients is obtaining a timely diagnosis of endometriosis and the appropriate care because of the educational deficit amongst general practitioners. A significant theme that emerged from this dataset was the number of 65 participants who described a lack of provider education as the reason their symptoms were dismissed, or their diagnosis was delayed in response to the open-ended question. These findings are consistent with pre-existing literature that the provider educational deficit has harmful consequences for patient outcomes and experiences (As-Sanie et al., 2019; Grundström et al., 2018). The next step is to develop and pilot standardized educational initiatives for healthcare providers to decrease this educational deficit. The findings from this project will also be presented at the WHRI @WellnessResearch event and the Canadian Association of Perinatal and Women’s Health Nurses annual conference. A manuscript will also be submitted to a relevant women’s health journal. 5.6.3 Policy Standardized tools for diagnosing and treating endometriosis at all levels of the healthcare system are a necessary step to improving the delivery of endometriosis care services. Tools could be specifically designed for nurses, nurse practitioners, midwives and general practitioners in the community and emergency room setting to quicker detect symptoms, make a diagnosis, and refer the patient for specialist care (Keeler et al., 2020). The creation of standardized testing tools would greatly improve the delivery of care and allow patients to feel more respected. 5.7 Conclusion Patients with endometriosis experience low measures of respect and ability to exercise autonomy in their care on the journey to being diagnosed with endometriosis. This is the first study to quantitatively evaluate the experience of respectful care within the context of BC endometriosis care services. The evidence in current literature suggests an experience of disrespectful care by outlining the barriers to care and lived experience of endometriosis. 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Cognitive and personality factors implicated in pain experience in women with endometriosis: A mixed-method study. The Clinical Journal of Pain, 35(12), 948-957. https://doi.org/10.1097/AJP.0000000000000757 76 Appendices Appendix A: Search Strategy Database Search Strategy Results CINAHL ((((MH "Endometriosis") OR (MH "Adenomyosis")) OR (endometriosis or "endometriosis complications" or "endometriosis care")) AND ((MH "Health Beliefs") OR ("life experience*" or belief* or experience* or expectation* or perception*))) AND ((MH "Respect") OR (respect* OR "respectful care" or "women-centered care") OR ("quality of life" OR well-being OR "health-related quality of life")) AND ((MH "Pelvic Pain+") OR (MH "Pain+") OR (pain* or "pain management" or "chronic pain")) 89 results (74 within the last 10 years) Pubmed (((("Respect"[Mesh]) OR ("respectful care" or "respect" or "women-centered care")) OR ("experience of care" or "disrespectful care" or dismissal)) AND ("Emotions"[MeSH]) OR ("Delayed Diagnosis"[MeSH]) OR ("Quality of Life"[MAJR])) AND (((endometriosis or "endometriosis care" or "endometriosis complications") OR (("Endometriosis"[Mesh]) AND "Adenomyosis"[Mesh]) OR ((("Endometriosis/complications"[MAJR]) AND "Endometriosis/psychology"[MeSH]) OR "Endometriosis/therapy"[MeSH] OR "Endometriosis/diagnosis"[MeSH])) OR "Pelvic Pain/diagnosis"[MeSH]) AND "Pelvic Pain/etiology"[MeSH] 82 results (65 within the last 10 years) PsychInfo ((("lived experience*" or perception* or "quality of care" or attitude* or view*) OR (DE "World View" OR DE "Frame of Reference")) AND (DE "Respect" OR ( "respectful care" or respect* or "women-centered care" ) OR ( "experience of care" or "experience of patient" ) OR disrespect* OR 171 results (75 within the last 10 years) 77 Database Search Strategy Results ("lived experience*" or perception* or attitude* or view*) OR (DE "World View" OR DE "Frame of Reference"))) AND (( "pelvic pain" or endometriosis ) OR ( "endometriosis treatment" or "endometriosis causes" or "endometriosis therapy" or "endometriosis pain" )) Medline ((((MH "Endometriosis") OR (MH "Adenomyosis")) OR (endometriosis or "endometriosis complications" or "endometriosis care")) AND ((MH "Health Beliefs") OR ("life experience*" or belief* or experience* or expectation* or perception*))) AND ((MH "Respect") OR (respect* OR "respectful care" or "women-centered care") OR ("quality of life" OR well-being OR "health-related quality of life")) AND ((MH "Pelvic Pain+") OR (MH "Pain+") OR (pain* or "pain management" or "chronic pain")) 223 results (153 within the last 10 years) CINAHL/Medline (Race Analysis) ((MH "Endometriosis") OR (MH "Adenomyosis")) OR (endometriosis or "endometriosis complications" or "endometriosis care") AND ((MH "Race Factors") OR (MH "Ethnic Groups+") OR (MH "Race Relations+") OR (MH "Racism") OR (racism or discrimination or prejudice or racial bias))) 135 results (101 within the last 10 years) Appendix A. Search Strategy 78 Appendix B: MORi and MADM scale with key for interpreting results Figure B1. MORi 79 Figure B2. MORi key 80 Figure B3. MADM scale Figure B4. MADM scale key 81 Appendix C: Survey Questionnaire Demographic Questionnaire 1. What was your biological sex at birth? A. Male B. Female C. Intersex D. Prefer not to answer 2. How do you identify by gender? I identify as… [select all that apply] a. Woman b. Man c. Transgender Woman d. Transgender Man e. Gender-fluid f. Non-binary g. Two-Spirit h. I identify as [free text box] i. I prefer not to answer 3. What is your sexual orientation? a. Asexual b. Bisexual c. Gay d. Straight/heterosexual e. Lesbian f. Pansexual g. Queer h. Questioning i. Two-Spirit j. I don’t identify with any option provided k. I prefer not to answer l. I identify as: [free text box] 4. How old are you? [free text box] 5. Do you live in British Columbia or receive care for endometriosis in British Columbia? Yes/No 6. What is the highest level of education that you have completed? a. Grade 7 b. Grade 10 c. High school d. Some university/college e. College program/Certificate f. Undergraduate degree g. Graduate degree h. Prefer not to answer 7. What best describes your racial identity? I identify as… [Select all that apply] a. Arab b. African 82 c. Caribbean d. Black e. Chinese f. Filipino g. Japanese h. Korean i. Latin American j. South Asian (East Indian, Pakistani, Sri Lankan, etc.) k. Southeast Asian (Vietnamese, Cambodian, Laotian, Thai, etc.) l. West Asian (Iranian, Afghan, etc.) m. White n. Indigenous to Canada o. Indigenous to another region p. Not listed q. I prefer not to answer r. I identify as [free text box] 8. How old were you when your symptoms of endometriosis began? [Age] 9. How old were you when you were diagnosed with endometriosis? [Age] 10. What was your primary reason for seeking endometriosis care? [select all that apply] a. Pain/Symptom management b. Fertility treatment c. Other: [free text box] 11. How were you diagnosed with endometriosis? a. Surgery b. Imaging (ex. ultrasound) c. Physical exam d. Other: (text) 12. What treatment have you received for your endometriosis? Select all that apply a. Surgery b. Hormone Therapy c. Allied Health (Physiotherapy, Acupuncture, etc.) d. Symptom Management e. Other (text) f. None 13. Do you have any other health issues, including reproductive health issues? If yes, please describe. [Free text box] General Instructions: The purpose of this study is to understand your experience of care on the journey to receiving a diagnosis of endometriosis. Did you feel respected or disrespected by healthcare providers during this journey? Were there health care providers who made you feel especially respected or disrespected? Are there any factors that you think influenced the care that you received? When answering the following questions, 1 means you strongly disagree with the statement and 6 means you strongly agree with the statement. 2-5 indicate varying levels of 83 disagreement/agreement with the statement. Please choose the option that best reflects your agreement level. If you are unsure please skip the question. Question Set 1: MOR index When considering your journey from the time you first experienced symptoms to receiving a diagnosis of endometriosis, choose the items that best reflect your experience. This can be about an interaction that you have had with any of your care providers or a general reflection on what your experience of care was. Figure C1. MORi Question Set 2: MADM scale When considering your journey from the time you first experienced symptoms to receiving a diagnosis of endometriosis, choose the items that best reflect your experience of being able to make decisions about your care. This can be about an interaction that you have had with any of your care providers or a general reflection on what your experience of care was. 84 Figure C2. MADM scale Question 3: 1. For the following questions please use the analog scale to indicate how respectful the care that you received from each provider was on the journey to receiving a diagnosis of endometriosis. [analog scale 1=least respectful care; to 10=most respectful care] a. Nurse b. Nurse Practitioner c. Midwife d. Family Doctor e. Emergency Doctor f. Gynecologist g. Endometriosis-specialized Gynecologist Question 4: Open Ended Question Is there anything else that you would like to share with us or that you wish your healthcare provider knew about your journey to being diagnosed with endometriosis? Were there any particularly notable experiences with any of your healthcare providers? This could be anything that you believe will improve the delivery of endometriosis care services. 85 Question 5: Has bringing a male partner/friend/family member to endometriosis appointments changed the way you were treated by your healthcare provider? 1. Yes 2. No 3. Maybe 4. I am not sure 86 Appendix D: Consent Cover Letter Study Title: Do patients with endometriosis receive respectful care? Experience of care among patients with endometriosis in British Columbia Principal Investigator: Dr. Suzanne Campbell Professor Applied Science | School of Nursing University of British Columbia | Vancouver Campus suzanne.campbell@ubc.ca Co-Investigators: Saraswathi Vedam, PhD RM FACNM Sci D(hc) Emmanuela Ojukwu PhD, RN Paul Yong, MD, Ph.D., FRCSC Primary Contact: Emily McKay MSN Student Faculty of Applied Sciences | School of Nursing University of British Columbia | Vancouver Campus emckay06@student.ubc.ca Phone 519 807 8939 Participation in this study is entirely optional. You may choose to stop completing the survey at any point. By completing the questionnaire, you are consenting to participate in this research. You must be at least 19 years old to participate and able to consent to the risks and benefits of this study. Study Description: This research project aims to understand if women with endometriosis in British Columbia experience respectful care through their journey to receiving a diagnosis of endometriosis. We are interested to understand if women’s experience of respectful care changes based on type of care provider or by race. The survey tools used to measure respectful care experiences have been adapted from a relevant study measuring respectful care outcomes in childbirth. Participant Role: The survey will take between 5-15 minutes to complete. Who can participate in this study: People who have been diagnosed with endometriosis, live in the province of British Columbia or receive endometriosis care services in British Columbia, and are 19+ can participate in this study. People of all races, gender identities, and ability levels are encouraged to participate. Risks and Benefits: This survey poses minimal risk to you. If recounting experiences of care is distressing, you are free to stop the survey at any time. Resources will be provided at the end of 87 the survey for anyone experiencing distress. There are no direct benefits to completing this survey. Your participation will help us understand women’s needs for care, especially regarding reproductive health concerns like endometriosis. What we learn from this study may help to improve the provision of endometriosis care services. At the end of the survey, you will be entered to win one of three, $100 CAD Amazon gift cards. The email address provided for the gift card raffle will be separate from your survey responses. The data collected and will be deleted as soon as the cards are distributed and received. You are still eligible to enter the raffle if you choose to stop the survey at any point. Confidentiality: All information that could be used to identify you will be stored in a secure virtual location. Your name and information will not be published with any of the results of this survey. All study data will be stored electronically on a UBC protected database and destroyed five years after the publication of the findings. Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected. You also have the legal right of access to the information about you that has been provided to the sponsor and, if need be, an opportunity to correct any errors in this information. Further details about these laws are available on request to the study principal investigator. By signing this form, you do not give up any of your legal rights and you do not release the study doctor, participating institutions, or anyone else from their legal and professional duties. Your de-identified research data (which means your name, birthdate, and other identifiers have been removed) may be deposited into a publicly accessible location at the time of publication. This can enhance the transparency of the research data and allows for external validation and fraud control, but it also allows others to access the data for re-analysis of this study or to do other kinds of analyses in the future beyond those you are consenting to in this study. Also, this future use of your data may not be subject to oversight by a research ethics board, and thus the data may be publicly shared and used in currently unknown ways. Once the data are made publicly available, you will not be able to withdraw your data. Even though the identifying information will be removed from the data it is possible that others may be able to find out who you are. The chance of this is currently thought to be quite low. UBC Research Participant Complaint Line: 604-822-8598 If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, or if you have any privacy related complaints, contact the Research Participant Complaint Line in the University of British Columbia Office of Research Ethics by e-mail at RSIL@ors.ubc.ca or by phone at 604-822-8598 (Toll Free: 1-877-822-8598). Please reference the study number (H22-01106) when contacting the Complaint Line so the staff can better assist you. If you have any questions, or experience any adverse effects, please contact Emily McKay at emckay06@student.ubc.ca. By completing the questionnaire, you are consenting to participate in this research. 88 Appendix E: Poster Advertisement Appendix E. Poster advertisement 89 Appendix F: Social Media Advertisement Appendix F. Social media advertisement
Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Campbell, Suzanne Hetzel
Vedam, Saraswathi
Do patients with endometriosis receive respectful care? : experience of care among patients with endometriosis in British Columbia
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