Applied Science, Faculty of
Medicine, Faculty of
Nursing, School of
Population and Public Health (SPPH), School of
DSpace
UBCV
Wright, Patrice
Master of Public Health / Master of Science in Nursing - MPH/MSN
University of British Columbia
People with lived and living experience of substance use and homelessness (PWLESH) often face barriers when accessing care including stigma and discrimination, transportation costs, limited services hours and the need to present identification. Such barriers may lead people to leave prior to the completion of treatment, delay seeking care or avoid care altogether. Although PWLESH visit the emergency department at a rate seven times the general population, I could find no published research has explored access to healthcare specifically within the emergency department among adults. The purpose of this thesis was to understand: (a) the emergency department health care experiences, specifically in terms of access, of PWLESH; (b) how the culture within the emergency department and larger health care organization shapes these experiences; and (c) the factors that will positively contribute to providing more equitable health care. A critical ethnographic approach was used for data collection and analysis. Twelve in-depth interviews with PWLESH and thirty hours of observations were conducted in two emergency departments, and seven hospital documents were reviewed. Drawing on central tenets of intersectionality and stigma theories, thematic coding techniques detailed by Thorne (2008) were used during data analysis. This analysis revealed three themes including: (a) experiences of stigma, (b) effects of stigma, and (c) recommendations for equitable healthcare. Several implications for practice and policy and future research are made.
THE INTERSECTION OF STIGMA AND INEQUITY: THE IMPACT OF STRUCTURAL VIOLENCE ON PEOPLE WITH LIVED AND LIVING EXPERIENCE OF SUBSTANCE USE AND HOMELESSNESS IN THE EMERGENCY DEPARTMENT by Patrice Wright B.Sc.N., R.N. McMaster University, 2012 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF PUBLIC HEALTH/MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (PUBLIC HEALTH/NURSING) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) October 2020 © Patrice Wright, 2020 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: The Intersection of Stigma and Inequity: The Impact of Structural Violence on People with Lived and Living Experience of Substance Use and Homelessness in the Emergency Department submitted by Patrice Wright in partial fulfillment of the requirements for the degree of Master of Public Health/ Master of Science in Nursing in Public Health /Nursing Examining Committee: Dr. Colleen Varcoe, Professor, School of Nursing, UBC Supervisor Dr. Vicky Bungay, Professor, School of Nursing, UBC Supervisory Committee Member Dr. Bernie Pauly, Professor, School of Nursing, UVic Supervisory Committee Member Elder Roberta Price, Elder, School of Nursing, UBC Supervisory Committee Member iii Abstract People with lived and living experience of substance use and homelessness (PWLESH) often face barriers when accessing care including stigma and discrimination, transportation costs, limited services hours and the need to present identification. Such barriers may lead people to leave prior to the completion of treatment, delay seeking care or avoid care altogether. Although PWLESH visit the emergency department at a rate seven times the general population, I could find no published research has explored access to healthcare specifically within the emergency department among adults. The purpose of this thesis was to understand: (a) the emergency department health care experiences, specifically in terms of access, of PWLESH; (b) how the culture within the emergency department and larger health care organization shapes these experiences; and (c) the factors that will positively contribute to providing more equitable health care. A critical ethnographic approach was used for data collection and analysis. Twelve in-depth interviews with PWLESH and thirty hours of observations were conducted in two emergency departments, and seven hospital documents were reviewed. Drawing on central tenets of intersectionality and stigma theories, thematic coding techniques detailed by Thorne (2008) were used during data analysis. This analysis revealed three themes including: (a) experiences of stigma, (b) effects of stigma, and (c) recommendations for equitable healthcare. Several implications for practice and policy and future research are made. iv Lay Summary People with lived and living experience of substance use and homelessness (PWLESH) often face barriers when accessing care such as stigma and discrimination. Barriers may lead people to leave prior to the completion of treatment, delay seeking care or avoid care altogether. Although PWLESH visit the emergency department (ED) at a rate seven times the general population, no published research has explored access to healthcare specifically within the ED among adults. This study sought to understand the ED experiences of PWLESH, how the organizational culture influenced this and how to improve care. Participants described they experienced stigma within ED encounters and that staff were inattentive to the larger context of their lives and the impact of a lack of access to survival resources. These factors had a profound impact on whether participants were able to access and receive the care they needed. Participants provided recommendations on how to improve care. v Preface This thesis was a primary study. The need for the study, the objectives and entry to the field, arose from a larger study examining interventions to foster equity-oriented healthcare. For the purpose of maintaining confidentiality, the study that this current study is related to will be referred to as “the equity study”. The thesis topic, design, data collection, analysis and writing of this thesis was completed by myself in collaboration with my thesis committee, Drs. Colleen Varcoe, Vicky Bungay and Bernie Pauly and Elder Roberta Price. Ethics approval for this study was obtained in January 2020 via a harmonized review across two health authorities. The project title the study was approved under was “Opportunities for Care: Providing Equitable Healthcare in the Emergency Department”. The research ethics board certificate number was H19-02091. vi Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ............................................................................................................................... iv Preface ............................................................................................................................................ v Table of Contents ......................................................................................................................... vi List of Figures ................................................................................................................................ x List of Abbreviations ................................................................................................................... xi Acknowledgements ..................................................................................................................... xii Dedication ................................................................................................................................... xiv Chapter 1: Introduction ............................................................................................................... 1 1.1 Study Focus: Intersection of Homelessness and Substance Use ................................ 2 1.2 Emergency Departments ............................................................................................. 4 1.3 Harm Reduction within Hospital Settings .................................................................. 5 1.4 The “Overdose” Crisis ................................................................................................ 7 1.5 Motives and Background for the Study ...................................................................... 8 1.6 Study Purpose ............................................................................................................. 9 1.7 Research Questions ..................................................................................................... 9 1.8 Relevance to Nursing – Ethical Nursing Practice ..................................................... 10 1.9 Thesis Overview ....................................................................................................... 10 Chapter 2: Literature Reviews .............................................................................................. 12 2.1 Literature Review One: Experiences of People With Lived and Living Experience of Substance Use and Homelessness Accessing General Health Care Services ........... 12 vii 2.1.1 Barriers to accessing care and their consequences. .............................................. 14 2.1.2 Facilitators to accessing care. ............................................................................... 17 2.2 Literature Review Two: Healthcare Providers’ Perceptions of People with Lived and Living Experience of Substance Use in Healthcare Settings .................................... 18 2.3 Chapter Summary ..................................................................................................... 23 Chapter 3: Methods ................................................................................................................ 24 3.1 Intersectionality ......................................................................................................... 24 3.2 Stigma ....................................................................................................................... 26 3.3 Research Methodology ............................................................................................. 27 3.4 Study Setting ............................................................................................................. 27 3.5 Negotiating Site Entry ............................................................................................... 28 3.6 Sampling, Recruitment and Data Collection ............................................................ 28 3.6.1 Observations. ........................................................................................................ 28 3.6.2 In-depth Interviews. .............................................................................................. 30 3.6.3 Hospital Documents .............................................................................................. 32 3.7 Data Analysis ............................................................................................................ 33 3.8 Rigor ......................................................................................................................... 34 3.9 Reflexivity ................................................................................................................. 35 3.10 Ethical Considerations .............................................................................................. 36 3.11 Study Limitations ...................................................................................................... 37 3.12 Chapter Summary ..................................................................................................... 38 Chapter 4: Findings ................................................................................................................ 39 4.1 Overview ................................................................................................................... 39 viii 4.1.1 Experiences of Stigma .......................................................................................... 40 4.1.2 Effects of Stigma ................................................................................................... 59 4.1.3 Recommendations for Equitable Healthcare ........................................................ 65 4.2 Chapter Summary ..................................................................................................... 68 Chapter 5: Discussion ............................................................................................................. 69 5.1 Summary of Findings ................................................................................................ 69 5.2 Situating the Findings within Existing Literature and its Unique Contributions ...... 70 5.3 Implications for Policy, Practice and Future Research ............................................. 72 5.3.1 Policy and Practice ................................................................................................ 72 5.3.2 Future Research .................................................................................................... 76 5.4 Conclusion ................................................................................................................ 77 Bibliography ................................................................................................................................ 78 Appendices ................................................................................................................................... 94 Appendix A Literature Review One Search Terms .............................................................. 94 Appendix B Literature Review Two Search Terms .............................................................. 95 Appendix C Participant Observation Guide ......................................................................... 96 Appendix D Study Poster - Patients ...................................................................................... 99 Appendix E Recruitment Script .......................................................................................... 100 Appendix F Study Poster - Staff ......................................................................................... 101 Appendix G Informed Verbal Consent Form – Observations - Patients ............................ 102 Appendix H Informed Verbal Consent Form – Observations – Staff ................................ 105 Appendix I Informed Verbal Consent Log ......................................................................... 108 Appendix J Master List ....................................................................................................... 109 ix Appendix K Interview Guide .............................................................................................. 110 Appendix L Patient Demographic Survey .......................................................................... 112 Appendix M Informed Verbal Consent Form for Interviews – Patients ............................ 114 Appendix N Safety Protocol for Patients ............................................................................ 117 List of Figures Figure 1 Number of participants by age group ......................................................................... 32 Figure 2 Sign about violence displayed in the ED .................................................................... 43 Figure 3 Signs about substance use questions displayed in the ED (variation 1) ..................... 47 Figure 4 Signs about substance use questions displayed in the ED (variation 2) ..................... 48 Figure 5 Prescribing pain medication brochure (outside). ........................................................ 50 Figure 6 Prescribing pain medication brochure (inside) ........................................................... 51 Figure 7 Choose ER Wisely poster displayed in the ED .......................................................... 57 xi List of Abbreviations ED: Emergency Department PWLESH: People with Lived and Living Experience of Homelessness xii Acknowledgements A most special acknowledgement to the people who, voluntarily, took the time to participate in an interview and who shared their emergency department experiences. I extend my deepest thank you to every one of you as this thesis would not exist or have any substance without you. Thank you to the University of British Columbia School of Nursing/Internal Nursing Research Grants and the Lyle Creelman Endowment Fund. Without the grant, this work would not have been possible. Thank you to the directors, managers and clinical educators at both hospitals who took the time to meet with me, answer my questions and connect me with the people to make this work possible. Thank you to the research manager and research coordinator in the aforementioned study in equity oriented health care. Thank you for taking time out of your busy schedules to share your knowledge of research related processes and to provide guidance, in particular on the logistics of data collection. A very special thank you to my thesis supervisor, Dr. Colleen Varcoe. You have been central to my success and growth throughout my masters program. You provided much needed and welcomed guidance even before I began the program from helping me apply for grants to selecting courses. During the early months of the program, you encouraged me to get involved in activities that positively contributed to my growth and success to date such as working as a Research Coordinator on one of the studies you are a principal investigator on. Most recently, you have always been there to answer the endless questions I have, to provide direction and push me further to excel at my thesis. I cannot thank you enough! xiii Many thanks to my thesis committee members, Drs. Vicky Bungay, Bernie Pauly and Elder Roberta Price for challenging me to think and write critically, asking important questions and for sharing the wealth of knowledge from your own work and experience. Thank you to my fellow MSN/MPH classmates. Completing the dual program would not be the same without you! Thank you for always engaging in important conversations and for your support throughout the program. Finally, thank you to my partner, David and to my family and friends. Thank you for always understanding when school and work took precedence over fun activities and gatherings. Thank you for your unconditional love and encouragement and for always being there when I needed it the most! xiv Dedication I dedicate this to all the people who face injustice in their day to day life and who have and continue to experience stigma and discrimination when accessing health and social services. Chapter 1: Introduction In 1984, the Canada Health Act was introduced in an effort to establish universal health care coverage for its citizens (Feldberg, Vipond, & Bryant, 2010). Despite this, gaps in the system exist and some people continue to face health and health care inequities. In particular, people who face multiple disadvantages experience higher rates of health inequities (Fiscella & Williams, 2004). Specifically, people with lived and living experience of substance use and homelessness (PWLESH) experience higher rates of physical and mental health problems and report lower perceived health status than the general population (Fischer et al., 2005; 2010). In addition, they bear a disproportionate burden of disability-adjusted life years and pre-mature mortality (Degenhardt et al., 2013; Mathers et al., 2013). In contrast to a neo-liberal perspective that explains differences in health as arising due to individual failure or a lack of personal responsibility, this paper views differences in health from a social justice lens (National Academy of Medicine, 2017; Pauly, 2008). Shifting perspectives from a neo-liberal to a social justice lens acknowledges the structural determinants of health (World Health Organization, 2010). Structural determinants refers to “the interplay between socioeconomic-political context, structural mechanisms generating social stratification and the resulting socioeconomic position of individuals” (World Health Organization, p. 28). This perspective recognizes the socioeconomic and political contexts (e.g., societal values) that construct and/or maintain social positions in society which determine peoples’ access to intermediary factors (e.g., housing situation, food security) that influence health (World Health Organization). The unjust, avoidable and remedial differences in health that arise between groups that are socially constructed, be they defined socially, economically, demographically, or geographically because of this are known as health inequities (Braveman, 2014; EQUIP Health Care, 2018b; Whitehead, 1991). 2 Of concern is that our health care system contributes to the health inequities that PWLESH face. Research shows that PWLESH experience barriers when accessing1 health care services which have negative implications and further contribute to the health inequities they face (Boeri, Tyndall, & Woodall, 2011; Bungay, 2013; Butters & Erickson, 2003; Christiani, Hudson, Nyamathi, Mutere, & Sweat, 2008; Hudson et al., 2010; Kumar, Gupte, Isaakidis, Mishra, & Munjattu, 2018; Markwick, McNeil, Small, & Kerr, 2015; McNeil, Small, Wood, & Kerr, 2014; Nicholas et al., 2015; Pauly, McCall, Browne, Parker, & Mollison, 2015). Studies have explored experiences of PWLESH accessing health care in settings such as inpatient hospital settings, hospital settings in general as well as health care settings in general. To date, only one study has examined experiences accessing care in the emergency department exclusively and it was conducted with youth. This current study uniquely contributes to existing literature as it explored access to health care specifically within an emergency department setting among PWLESH who are adults. 1.1 Study Focus: Intersection of Homelessness and Substance Use This study specifically focused on the emergency department care experiences of people with lived and living experience of homelessness and substance use. In the context of this study, homelessness included people who were currently experiencing homelessness or who were at risk of homelessness according to the Canadian Definition of Homelessness (Gaetz et al., 2017). This definition reflects “a range of housing and shelter circumstances, with people being without any shelter at one end, and being insecurely housed at the other” (Gaetz et al., p. 2). This range 1 This thesis takes up the conceptualization of access to healthcare in terms of “availability of services and providers, but also the delivery of services at the point of care, a significant component of which is the social relationship between provider and patient” (Horrill et al., 2018, p. 4). This conceptualization concerns itself with the way historical, political and social factors determine access to care (Horrill et al.). 3 includes those whose housing circumstances may be described as unsheltered, emergency sheltered, provisionally accommodated or those who are considered at risk of homelessness (Gaetz et al.). Unsheltered includes living circumstances where people live in public or private spaces such as sidewalks or unoccupied buildings or spaces that are “not intended for permanent human habitation” such as a van or tent (Gaetz et al., p. 3). These people may only be accessing emergency shelters when the weather is severe (e.g., during a heat wave) (Gaetz et al.). Emergency sheltered “refers to people who, because they cannot secure permanent housing, are accessing emergency shelter and system supports, generally provided at no cost or minimal cost to the user” (Gaetz et al., p. 3). These shelters may be overnight emergency shelters, shelters for people experiencing interpersonal violence, or shelters for people whose primary accommodation is not livable for reasons such as a natural disaster or fire (Gaetz et al.). Provisionally accommodated “describes situations in which people, … without permanent shelter, access accommodation that offers no prospect of permanence” (Gaetz et al., p. 4). This includes people whose rental agreements are short and not permanent in nature such as those living in hostels or motels or other living situations that are not permanent and short in nature and involve living with other people including friends, family or strangers (Gaetz et al.). At risk of homelessness “includes individuals or families whose current housing situations are dangerously lacking security or stability … [but compared with those who are provisionally housed] these people are living in housing that is intended for permanent human habitation” (Gaetz et al., p. 5). Examples of situations that are associated with this include low paying employment that lends offers little ability to save money, employment that ends unexpectedly or housing situations at risk of eviction (Gaetz et al.). 4 In addition to lived experience of homelessness, lived and living experience with substance use included people with current or previous experience of substance use. Substance use specifically included substances that were currently considered illegal and controlled prescription drugs per the current Canadian context, excluding alcohol, that had resulted in health or social related harms (Controlled Drugs and Substances Act, 1996; Varcoe, Browne, & Michalson, 2018). Social harms included those related to incarceration or stigma and health related harms including overdoses, injection related abscesses, cellulitis and HIV (Varcoe et al., 2018). 1.2 Emergency Departments The emergency department served as an important setting to study for several reasons. First, people PWLESH frequently seek care in the emergency department. Kendall et al. (2017) found that on average, this PWLESH visit the emergency department at a rate seven times that of the general population. This rate reflects the difficulties that PWLESH have accessing primary care services and the nature of the health issues that they face (Khandor et al., 2011; Kushel, Perry, Bangsberg, Clark, & Moss, 2002). Second, emergency departments run under increasing pressure related to overcrowding, inadequate staffing and bed shortages (Hoot & Aronsky, 2008). These pressures have led to nursing practices characterized by efficiency without commensurate attention to effective resources and are most likely to affect the care that people who face disadvantages (e.g., homelessness) receive (Varcoe & Rodney). For example, Varcoe and Rodney found that one aspect of an “efficiency processing” system within the emergency department was the identification of “a manageable problem” (Varcoe & Rodney, p. 101). Such efficiency-based practices undermine the fact that PWLESH are likely to have numerous unmet healthcare needs and bear a disproportionate burden of other illnesses. As such, they may require 5 care for more than one concern (Argintaru et al., 2013). Illnesses include those such as HIV, hepatitis B, hepatitis C, chronic liver disease, skin and soft tissue infections and poor mental health (Booth, Richard, Li, Shariff, & Rayner, 2020; Grinman et al., 2010; Klinkenberg et al., 2003). Furthermore, efficiency-based practices also undermine the complex nature of this population’s health and social issues, meaning the ways that this population’s health and social issues are intricately connected and stem from structural inequities. Pauly highlights this whereby nurses work in the emergency department is characterized by “fixing” patients as quickly as possible and sending them on their way (Pauly, 2008). As such, the culture within the emergency department in combination with the frequency at which PWLESH seek care there make the emergency department an important setting to study and ultimately a setting at which inequities may be effectively ameliorated. 1.3 Harm Reduction within Hospital Settings In addition to the reasons mentioned above, lack of a harm reduction approach within Canadian hospitals, including in emergency departments also made this an important setting to study (Pauly, 2008b). A harm reduction approach includes practices that are non-judgmental and that do not discriminate against people with lived and living experience of substance use (EQUIP Health Care, 2018a; International Harm Reduction Association, 2010). Harm reduction practices also include meeting people where they are at and reducing the harms associated with substance use in a manner that does not require abstinence or a reduction in substance use (EQUIP Health Care, 2018a; International Harm Reduction Association, 2010). Practices that reduce the harms of substance use include both “downstream” approaches such as the provision of naloxone kits or safe consumption supplies as well as “upstream” approaches that aim to reduce the social factors 6 that influence the harms of substance use such as safe housing programs (Jiao, 2019; Varcoe et al., 2018). While harm reduction practices have been integrated within community settings in Canada, practices and policies within Canadian hospitals continue to reflect competing discourses that prohibit and criminalize substance use (Goodman et al., 2017; McNeil et al., 2014; Pauly, 2008b; Pauly et al., 2015). As evidence to this point, in a community setting, Pauly (2008b) found that nurses adopted a harm reduction approach; they offered patients safe use equipment to reduce the direct harms of substance use and also worked to address the in-direct (i.e., social) harms of substance use such as homelessness. On the contrary, Pauly (2008b) found that nurses who worked in a hospital setting felt frustrated about their inability to address the social harms related to substance use and acknowledged that judgement and discriminatory practices towards people who use substances existed in their workplace. In addition, several studies have demonstrated that substance use is prohibited in hospital settings and that patients are forced to leave when caught for substance use, regardless of whether their treatment is complete (Goodman et al.; McNeil et al.; Pauly et al., 2015). Practices and policies within hospital settings that do not align with harm reduction have negative implications. Studies show that judgmental and discriminatory care experiences lead patients to leave prior to the completion of treatment, to delay seeking future care until symptoms become severe or avoid care altogether (Boeri et al., 2011; Bungay, 2013; Markwick et al., 2015; Pauly et al., 2015). Studies also show that patients forgo harm reduction practices when using substances to avoid getting caught (Goodman et al., 2017; McNeil et al., 2014; Pauly et al., 2015). Furthermore, patients who leave prior to the completion of treatment because of the care they receive or because they are forced to leave when caught for substance use are more 7 likely to be readmitted within 14 days after leaving, have multiple re-admissions one year after and have higher all-cause in-hospital mortality compared to those who do not leave (Choi, Kim, Qian, & Palepu, 2011). The lack of harm reduction approach that disadvantages people with lived and living experience of substance use within hospital settings, including within the emergency department, provided further reason for why the emergency department was an important setting to study. 1.4 The “Overdose” Crisis The “overdose” crisis in Canada provided even more relevance to this topic today in addition to the reasons already mentioned. Since 2011, the rate of unintentional drug overdose deaths has increased dramatically across Canada. Mortality rates are the highest in the province of British Columbia (British Columbia Coroners Service, 2018). With the majority of unintentional drug overdose deaths occurring among those 19 to 59 years of age, it is contributing to pre-mature mortality in British Columbia (BC Ministry of Public Safety and Solicitor General, 2018). In fact, mortality resulting from unintentional drug overdoses has lowered life expectancy in British Columbia and those experiencing social and/or material deprivation have been disproportionately affected (Ye, Sutherland, Henry, Tyndall, & Kendall, 2018). Since the novel coronavirus resulted in widespread shutdowns and shelter-in-place orders, the rate of unintentional drug overdose deaths has reached the highest it has ever been in British Columbia (BC Centre for Disease Control, 2020; Johnston, 2020). First Nations People in British Columbia are disproportionately affected with the rate of unintentional drug overdose deaths among First Nations People 5.6 times the rate of other British Columbia residents (First Nations Health Authority, 2020). Changes in the supply of illegal drugs, an increasingly toxic 8 drug supply and limited access (e.g., change in capacity, hours of operation) and closure of key services including supervised consumption sites, food banks, day/drop-in programs and primary care and walk-in clinics are a few of the many factors contributing to the harms that PWLESH face (Pauly, 2020; Tyndall, 2020). Literature shows that a majority of people who have overdosed visit the emergency department. For example, Otterstatter et al. (2018) found that approximately 60% of people who overdosed had visited the emergency department in the year prior. Furthermore, 19% of those who had overdosed “left the emergency department without being seen or against medical advice” compared to 4% who were matched controls (Otterstatter et al., p. 330). While the emergency department is a place where healthcare providers have an opportunity to engage with people who are at risk of an overdose, including PWLESH, opportunities are limited when the emergency department does not foster an environment, both on an interpersonal and structural level, where people can do so. As such, it proved crucial to explore access to health care within an emergency department setting from the perspective of PWLESH. 1.5 Motives and Background for the Study My work as a Registered Nurse and as a research assistant led me to pursue this work. I began my career as a Registered Nurse in the emergency department and worked there for seven years. I can testify to the pressures under which emergency departments increasingly operate and the tension this creates for nurses in providing equitable care for people who face disadvantages. Over the years, I have come to understand how these tensions in addition to organizational policies that oppose harm reduction approaches go against my own and other nurses’ abilities to practice ethically and enact moral agency (Storch, Rodney, Pauly, Brown, & Starzomski, 2002). 9 There is no question that nurses, including myself experience moral distress as a result of this (Storch et al., 2002). I also came to recognize the need for this study while working as a research assistant on a multi-site study aimed at investigating strategies to optimize equity oriented health care in emergency departments. In the larger study, prior to the intervention, data was collected from patients about their health care experiences during their emergency department visit. While I collected data, I realized that patients, in particular, those who faced multiple intersecting disadvantages, had stories to tell about their care and the implications it had for them, but that these stories were not told and captured for analysis because we collected primarily quantitative data. These stories have weighed on me ever since and I see nothing more important than to ensure they are heard. It is for these reasons that I chose this area of focus for my master’s thesis and sought to generate recommendations on how care can be delivered in a more equitable way. 1.6 Study Purpose The purpose of the study was three fold: (a) to understand the emergency department health care experiences, specifically in terms of access, of PWLESH; (b) to understand how the culture within the emergency department and larger health care organization shapes these experiences; and (c) to understand factors that will positively contribute to providing more equitable health care. The ultimate aim of this study was to generate recommendations on how care can be delivered in a more equitable way to PWLESH in the emergency department. 1.7 Research Questions 1) What are the emergency department health care experiences, specifically in terms of access, among PWLESH and how are these shaped by other intersecting social locations? 10 2) How does the culture in the emergency department and larger organization influence these experiences? 3) What would positively contribute to providing equitable care among PWLESH in the emergency department? 1.8 Relevance to Nursing – Ethical Nursing Practice The Code of Ethics for Registered Nurses outlines that nurses in Canada have a responsibility to provide ethical care “regardless of attributes such as age, race, gender, gender identity, gender expression, disability, and others” (Canadian Nurses Association, 2017a, p. 4). However, these principles are contravened when practices result in differential treatment or access to care for PWLESH (Pauly, Goldstone, McCall, Gold, & Payne, 2007). Nurses are uniquely situated to shape the care that people receive because they are usually one of the first points of contact with patients at the triage desk and spend the most time caring for patients in the emergency department (Elder et al., 2004; Hobgood, Villani, & Quattlebaum, 2005; Hollingsworth, Chisholm, Giles, Cordell, & Nelson, 1998). As a contribution to efforts to uphold these principles, this study aimed to generate recommendations on how care can be delivered in a more equitable way to PWLESH in the emergency department. 1.9 Thesis Overview In this chapter, I introduced the research topic, described the background for the study and outlined the study purpose, research questions and relevance to nursing. Chapter two describes the approach I used to conduct two literature reviews and provides a summary of the current state of this literature. The first literature review focuses on the health care experiences of PWLESH accessing general health care services. The second literature review focuses on the perceptions of healthcare providers towards people with lived and living experience of substance 11 use within health care settings. Chapter three provides a description of the methods that were used for the study including the theoretical framework, research methodology, study setting, methods used to collect the data including sampling and recruitment techniques and methods used to analyze the data. In chapter three I also discuss the measures I took to ensure study rigor, uphold ethical research principles, and the study limitations. Chapter four presents the research findings from the analysis. The chapter includes an overview of the findings and then presents the three main themes from the analysis. Chapter 5 presents a discussion of the findings. This chapter includes a summary of the findings, a discussion of the findings situated within existing literature and the unique contributions the study makes. It also includes implications of the findings in terms of education and practice, policies and future research. 12 Chapter 2: Literature Reviews In chapter one, I discussed the health inequities that PWLESH face. In addition, I detailed why the emergency department is an important setting to study outlining the pressures under which emergency departments operate and the lack of harm reduction in hospital settings, including within the emergency department. In this chapter, I present two literature reviews. The first literature review is on the health care experiences of PWLESH. The second literature review is on the perceptions that healthcare providers have towards people with lived and living experience of substance use within health care settings. For each literature review, I discuss the approach I took and then summarize the literature. 2.1 Literature Review One: Experiences of People With Lived and Living Experience of Substance Use and Homelessness Accessing General Health Care Services While a wealth of literature exists on the experiences of PWLESH accessing specialty services, such as substance use related programs and mental health services, I was interested in examining the state of the literature on general health care services such as primary care and hospital care. Furthermore, while there is also a number of studies that examine the utilization of health care services among PWLESU, I focused on understanding peoples’ experience specifically in terms of accessing general health care services. To examine the existing literature on the experiences of PWLESH accessing general health care services, I conducted a comprehensive literature search in three databases including, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE and PsycINFO. Two concepts were used to search the literature. The first concept was people with lived and living experience of substance use. While homelessness was another concept I wanted to include, including it did not recognize those at risk of homelessness. As such, I did not include 13 it in my search terms and instead reviewed articles to determine whether they also met the criteria for people with experience of homelessness. The second concept was experiences accessing general health care service(s). The search terms were combined within each concept using the Boolean operator “OR” and were then combined across the two concepts using the Boolean operator “AND” (see Appendix A for Literature Review One Search Terms). Studies published in any year, only empirical studies and studies published in English were included. In addition, studies were included if the participants had current or past substance use; in some studies, this was easily determined but not in others. Some studies used terms such as “drug abuse” or “drug users” without clearly defining their meaning. In cases where drug or substance use was not defined, the study was included as this constituted a large percent of studies. Studies were also included if the majority or all participant were homeless or at risk of homelessness; in some studies, this was evident in the inclusion criteria and in others, I reviewed the demographic breakdown and/or recruitment strategy to determine this. Studies were excluded for several reasons. Studies were excluded if they were not from the perspective of patients (e.g., from the perspective of health care providers). Some studies were conducted outside of Canada and for various reasons were not relevant to the Canadian context. As such, these studies were reviewed to determine whether substance use and the experiences accessing health care services were relevant in the Canadian context. For some studies, this meant excluding the study entirely and for others it meant excluding only parts of the findings. For example, studies conducted in the United States frequently cited not having insurance as a barrier to accessing health care services. As having insurance in some regards is less relevant in the Canadian context, only barriers that were relevant were included. 14 A total of twenty-three studies were reviewed in detail to understand existing literature about this phenomenon. The studies were published between 2002 and 2018 and included youth (n= 4) and adults (n=19). The majority of studies were conducted in Canada (n= 10) and the United States (n= 11) while one study was conducted in Brazil and one in the United Kingdom. Most studies were qualitative (n= 21), one study used mixed methods and one study was quantitative. Some studies exclusively examined certain people including women (n= 6), people who are Indigenous (n= 1) and people who have a history of incarceration (n= 1). Most studies looked at health care services in general whereas one study examined hospital care in general, one examined more specifically inpatient hospital care and one study examined emergency department care. While it was evident reviewing the findings that emergency department experiences were a part of the studies that looked at general health care services, and hospital care, only one study, conducted with youth, exclusively examined participants’ experiences accessing emergency department services. After reviewing the twenty-three studies, two prominent themes were apparent: barriers in accessing care and their consequences and facilitators in accessing care. 2.1.1 Barriers to accessing care and their consequences. In all studies, barriers were present at interpersonal and structural levels when PWLESH accessed care. On an interpersonal level, participants most notably experienced stigma and discrimination in health care settings related to substance use, and/or homelessness or living in an inner-city neighbourhood (Bungay, 2013; Butters & Erickson, 2003; Christiani et al., 2008; Drumm et al., 2003; Goodman et al., 2017; Hudson et al., 2010; Lang et al., 2013; Markwick et al., 2015; Marlow, White, & Chesla, 2010; McNeil et al., 2014; Mulia, 2002; Neale, Tompkins, & Sheard, 2008; Nicholas et al., 2015; Paquette, Syvertsen, & Pollini, 2018; Pauly et al., 2015; 15 Santos Cruz et al., 2013; Summers, Hellman, MacLean, Rees, & Wilkes, 2018; Sznajder-Murray & Slesnick, 2011; Weiss, McCoy, Kluger, & Finkelstein, 2004). Uniquely, Goodman et al. found that people who are Indigenous not only experienced stigma and discrimination related to substance use and/or homelessness but also experienced racism when accessing health care services. Stigma related to substance use operated in health care encounters whereby substance use became the focus of patients visits (Bungay; Goodman et al.; McNeil et al.; Pauly et al.). Overemphasis on substance use meant that the health care issues for which patients initially sought care were left unaddressed (Bungay, 2013; Neale et al., 2008; Summers et al., 2018; Weiss et al., 2004). Stigma related to substance use also led health care providers to perceive patients as ‘drug seeking’ resulting in misconceptions about patients’ pain (Bungay; Goodman et al., 2017; McNeil et al., 2014; Pauly et al., 2015; Summers et al.; Weiss et al.). These perceptions shaped healthcare providers’ pain management practices; for patients in hospital settings this meant being refused pain medications, which resulted in extreme discomfort, withdrawal and continued substance use to alleviate it (McNeil et al.; Summers et al.). Stigma related to substance use and/or homelessness also magnified hierarchical power relationships between care providers and patients (Bungay; Christiani et al., 2008; Hudson, Nyamathi, & Sweat, 2008; Nicholas et al., 2015; Pauly et al.; Summers et al.). Patients reported having to constantly legitimize their concerns or in some circumstances, as a strategy to ensure future access to care, patients abstained from engaging in care (e.g., not voicing their concerns) (Bungay; Christiani et al.; Goodman et al.; McNeil et al.; Neale et al.; Pauly et al.). Stigmatization was also manifested in increased surveillance of patients (Markwick et al., 2015; McNeil et al.; Neale et al.; Nicholas et al.; Pauly et al.). Patients reported that healthcare providers and security guards monitored and regulated their activities in health care settings 16 (Markwick et al.; McNeil et al.; Neale et al.; Nicholas et al.; Pauly et al.) . Furthermore, patients reported that in some cases they were falsely accused of theft and subjected to physical searches (Markwick et al.; McNeil et al.; Pauly et al.). For patients who continued to use substance(s) in hospitals settings, this meant forgoing harm reduction practices to avoid getting caught (McNeil et al.). There were also several structural level barriers that PWLESH experience when accessing care. First, excessive wait times and limited clinic hours acted as barriers when they accessed care (Bungay, 2013; Christiani et al., 2008; Drumm et al., 2003; Hudson et al., 2010; Hyshka, Anderson, & Wild, 2017; Lang et al., 2013; Marlow et al., 2010; Nicholas et al., 2015; Santos Cruz et al., 2013). These factors created a source of tension for people who also needed to access food and shelter services at certain times due to their restricted hours and affected whether they were able to make income that day to meet their basic needs (e.g., day laborers hired only at certain times) (Bungay; Lang et al.; Nicholas et al.). Second, difficulty navigating health care services, lack of access to a phone and transportation costs to and from health care services were barriers for patients (Boeri et al., 2011; Drumm et al.; Lang et al.; Neale et al., 2008; Nicholas et al.; Santos Cruz et al.). Lastly, administrative barriers including policies that required patients to present their health card or government issued identification and lost medical or social records such as those that provide proof of ‘disability’ acted as barriers (Boeri et al.; Drumm et al.; Lang et al.; Marlow et al.; Nicholas et al.; Santos Cruz et al.). These policies were not based on understanding about situations that lead people to being unable to present identification, such as health cards. Overall, interpersonal and structural barriers led patients to leave prior to the completion of treatment, to delay seeking care until their symptoms became severe or to avoid 17 care altogether (Boeri et al.; Bungay; Goodman et al., 2017; Markwick et al., 2015; Mulia, 2002; Paquette et al., 2018; Pauly et al., 2015; Weiss et al., 2004). 2.1.2 Facilitators to accessing care. In addition to barriers to care and their consequences, studies also suggest several facilitators to accessing care for PWLESH. First, and most commonly, several studies communicate that people want to access care that is non-judgmental, where hierarchical relationships between health care providers and patients are less prominent and do not interfere with patient engagement and relationships and where relationships foster understanding of patients’ life circumstances and allow patients to build trust with providers (Bungay, 2013; Christiani et al., 2008; Hudson et al., 2008; Marlow et al., 2010; Sznajder-Murray & Slesnick, 2011). In these studies, trust was crucial in building a relationship with health care providers and essential in being able to communicate with health care providers and engaging in care (Bungay, 2013; Christiani et al., 2008; Hudson et al., 2008; Sznajder-Murray & Slesnick, 2011). Second, in recognizing that people have to access other services and/or work in order to meet their daily needs, studies show that improving wait times and having the option to access walk-in appointments and scheduling appointments is important (Bungay; Christiani et al.). Third, studies also show that people want to access care in a place that is inviting, provides relief for those who are experiencing homelessness, and that distracts them from wait times (Bungay; Christiani et al.; Drumm et al., 2003). This includes being able to socialize with other people, being free from violence, and settings that provide access to basic hygiene, food and health resources (Bungay; Christiani et al.). Fourth, as the location of services can be a barrier in accessing care, patients report that covering the cost of transportation to and from health care services and locating different services within close proximity of each other would facilitate 18 access to care (Christiani et al.; Drumm et al.; Marlow et al.). Lastly, social support, including friends and family members who are supportive during their visit or are able to help out with child care or transportation to and from services facilitated access to care (Drumm et al.). 2.2 Literature Review Two: Healthcare Providers’ Perceptions of People with Lived and Living Experience of Substance Use in Healthcare Settings The purpose of the second literature review was to understand the perceptions that healthcare providers have toward PWLESH within healthcare settings. It was important to explore this literature because, as previously discussed, stigmatizing and discriminatory care encounters prevent people from accessing and receiving the care they need. While this current study focuses on the emergency department experiences of people with lived and living experience of substance use and homelessness, this study looked at the literature more broadly. The literature below includes health care providers attitudes and perceptions towards people with lived and living experience of substance use more broadly. I searched two databases including CINAHL and MEDLINE. Three concepts were used to search the literature. The first concept was healthcare providers (e.g., nurses, social workers, physiotherapist and physicians). The second concept was people with lived and living experience of substance use. Realizing that many studies used terms such as ‘drug users’ or ‘substance use problems’ and that the majority of terms were undefined, I expanded the search to include these types of studies but excluded studies that specified they were not related to substance use. I also excluded studies that were related to alcohol or tobacco. The third concept was perceptions. By perceptions I was exclusively concerned with the way healthcare providers perceive people with lived and living experience of substance use within healthcare settings. The search terms were combined within each concept using the Boolean operator “OR” and were then combined across 19 the three concepts using the Boolean operator “AND”. I added a third search term combined with the Boolean operator “NOT” to the third concept in the MEDLINE search to exclude studies related to tobacco (see Appendix B for Literature Review Two Search Terms). Studies were also excluded if they were not available through the University of British Columbia library or in English. This included several studies published in the 1980s and 1990s that were not available and which I was not able to review altogether. A total of 19 articles were included of which 11 were quantitative, 7 were qualitative and 1 used mixed methods. The studies were published between 2002 and 2019 and were conducted in a variety of countries including 3 in England, 3 in Ireland, 3 in the United States, 4 in Australia, 1 in each of Israel, the Netherlands, Italy, Tajikistan and Taiwan and 1 study was conducted in multiple European countries including Bulgaria, Greece, Italy, Poland, Scotland, Slovakia, Slovenia and Spain. A variety of healthcare providers were represented in the studies and included studies that focused on a single type of healthcare provider (n= 10) and studies that recruited more than one type of healthcare provider (n= 9). Of the studies that only included a single type of healthcare providers 2 included pharmacists and pharmacy students, 6 included nurses, 1 included addiction and community psychiatrists and 1 included physician residents. Healthcare providers working in both primary care and community settings as well as hospital settings including the emergency department and inpatient units. Healthcare providers’ perceptions of people with lived and living experience of substance use was captured using several different methods. Of the quantitative studies, six studies used the Medical Condition Regard Scale, an instrument that measures the degree to which healthcare providers think “patients with a given medical condition [are] enjoyable, treatable, and worthy of medical resources’ and captures the construct of medical condition regard which reflects biases, 20 emotions and expectations a given medical condition descriptor generates in medical students and caregivers” (Gilchrist et al., 2011, p. 1116). Of note, these studies found that compared to diabetes, intellectual disabilities, depression, schizophrenia and other mental health conditions, healthcare providers held the lowest regard for people with lived and living experience of substance use (Avery et al., 2013, 2019; Boyle et al., 2010; Gilchrist et al.). Furthermore, Gilchrist et al. compared ‘problematic alcohol use’ with ‘problematic drug use’ and found that healthcare providers regard the later significantly lower (Gilchrist et al.). Several of these studies also compared specialist ‘addiction’ staff with other types of staff including primary care, general and community psychiatry and found that the former held significantly higher regard toward people with lived and living experience of substance use than the later (Avery et al.; Gilchrist et al.; Van Boekel, Brouwers, van Weeghel, & Garretsen, 2014). Three studies used the ‘Substance Abuse Attitude Survey’ which is “designed to measure attitudes towards substance abuse amongst health providers” and includes five attitude groups: (a) treatment intervention, “orientation towards perceiving substance use/misuse in the context of treatment and intervention”; (b) treatment optimism, “an optimistic perception of treatment and the possibility of a successful outcome”; (c) permissiveness, “a tolerant and accepting attitude toward substance use”; (d) non-moralism, “absence/avoidance of moralistic perspective when considering substance use and substance users”; (d) non-stereotyping, “non-reliance on popular societal stereotypes of substance use and substance users” (Richmond & Foster, 2003, p. 395). Pinikahana, Happell and Carta (2002) surveyed mental healthcare providers in Australia and found that they had ‘optimal’ attitudes for working with people with lived and living experience of substance use across all five attitude groups. In contrast, Richmond and Foster surveyed mental healthcare providers in the UK and found that all attitude groups except for non-21 stereotyping had borderline or below optimal attitudes. Kelleher and Cotter (2009) found that emergency department nurses and physicians in Ireland had optimal attitudes in all groups other than permissiveness. Finally, Chang and Yang (2013) who surveyed Registered Nurses in Taiwan at two medical centers found that nurses held optimal attitudes and that those working in psychiatric units, those who had continuing education in substance use and those whose “helped with family members or friends with substance use problems” had significantly more positive attitudes toward people with lived and living experience of substance use compared with those who did not have these experiences (p. 97). Two studies used instruments that other studies did not. Ledda et al. (2017) measured discrimination, acceptance and fear of people with lived and living experience of substance use among health care staff in a hospital setting in Italy. They found that healthcare providers had ‘average’ levels of acceptance of people with lived and living experience of substance use and also found that physicians and nurses had significantly lower levels of acceptance and significantly higher levels of discrimination and fear compared with health care assistant and health care diagnostic staff (Ledda et al.). Natan, Beyil and Neta (2009) measured whether nurses working on an inpatient medical unit in Isreal held stereotypes of people who use drugs. Nurses held negative stereotypes including that people with lived and living experience of substance use are violent, contagious, scary, dangerous and that they have a weak character (Natan et al.). The qualitative studies provided a stark contrast to any of the quantitative studies that found that healthcare providers have positive perceptions of people with lived and living experience of substance use. All the qualitative studies (n= 14) found that healthcare providers held negative stereotypes of people with lived and living experience of substance use. Most often 22 cited in these studies was that people with lived and living experience of substance use are ‘violent’, ‘aggressive’, ‘irrational’, ‘angry’, ‘abusive’ and ‘dangerous’ (Ford, 2011; Hoskins, Salmon, Binks, Moody, & Benger, 2005; Ibragimov et al., 2017; MacKridge & Scott, 2009; Neville & Roan, 2014; Peckover & Chidlaw, 2007). In some cases this was discussed within a discourse of safety whereby people with lived and living experience of substance use were perceived as ‘risky’ and healthcare providers as ‘vulnerable’ (Ford; Peckover & Chidlaw). Second to this was that people with lived and living experience of substance use are ‘manipulative’, ‘dishonest’ and ‘criminals’ (Ford; Hoskins et al., 2005; Mclaughlin, Mckenna, Leslie, Moore, & Robinson, 2006; Neville & Roan). Several studies discussed that people with lived and living experience of substance use were particularly manipulative in regard to medication and treatment regimens including ‘drug seeking’ (Ford; Hoskins et al.; Neville & Roan). Studies also discussed that healthcare providers viewed people with lived and living experience of substance use as ‘difficult’ and ‘undeserving of care’. Several studies discussed that healthcare providers viewed people with lived and living experience of substance use as ‘challenging’, ‘time-intensive’ and that this took time away from patients who were ‘truly sick’ (Ford, 2011; Hoskins et al., 2005; Lovi & Barr, 2009; Neville & Roan, 2014). Perceptions of people with lived and living experience of substance use as ‘challenging’ and ‘time-intensive’ revolved around not only perceptions already described but also because of the care they needed in terms of pain control and drug withdrawal, their illegal drug use, time spent getting patients to stay for treatment, and their complex comorbidities (Ford; Hoskins et al.). The studies discussed that these perceptions led healthcare providers to avoid fully engaging in care or avoid being involved in their care altogether (Ford; Mclaughlin et al., 2006; Peckover & Chidlaw, 2007). 23 2.3 Chapter Summary In this chapter, I discussed what is already known about the experiences of PWLESH accessing general healthcare services. Studies thus far have examined this phenomenon in a number of health service locations, among a wide range of age groups and among other intersecting social locations (e.g., gender). Evident within this literature is that PWLESH face several barriers when accessing care. In turn, these barriers have negative implications and prompt people to leave before their treatment is complete, delay seeking care or avoid care altogether. The literature also imparts several suggestions that may reduce the barriers they face and interventions that lead to providing more equitable care. However, there remains a gap in the literature about access specifically as it relates to the emergency department visits by PWLESH who are adults. I also discussed what is known about healthcare providers’ perceptions of people with lived and living experience of substance use in health care settings. This body of literature identifies how some healthcare providers hold negative stereotypes of people with lived and living experience of substance use and that this may prevent healthcare providers from fully engaging in or avoid being involved in their care altogether. 24 Chapter 3: Methods In chapter two, I discussed the findings of two literature reviews. In this chapter, I review the methods that were used for this study. I begin by describing the theoretical framework including intersectionality and stigma. I then explain the methodology for the study and outline the setting, the methods used to collect the data including sampling and recruitment techniques and methods used to analyze the data. I end by describing the measures that were used to ensure study rigor, ethical considerations and the study limitations. 3.1 Intersectionality Drawing on the work of Crenshaw, Collins (2019) states “from its inception, the idea of intersectionality worked in multiple registers of recognizing the significance of social structural arrangements of power, how individual and group experiences reflect those structural intersections, and how political marginality might engender new subjectivities and agency” (p. 26). According to (Collins, 2019), six core constructs form the basis of intersectionality including relationality, power, social inequality, social context, complexity and social justice. Relationality “shifts focus away from the essential qualities that seemingly lie in the center of categories and toward the relational processes that connect them. … Race, gender, class, and other systems of power are constituted and maintained through relational processes, gaining meaning through the nature of these relationships” (Collins, p. 46). Power includes how “systems of power co-produce one another in ways that reproduce both unequal material outcomes and the distinctive social experiences that characterize people’s experiences within social hierarchies. Stated differently, racism, sexism, class exploitation, and similar oppressions may mutually construct one another by drawing upon similar and distinctive practices and forms of 25 organization that collectively shape social reality” (Collins, p. 46). In terms of social inequality, intersectionality “points to the workings of power relations in producing social inequalities and the social problems they engender” (Collins, p. 46). Social context includes “understanding how the distinctive social locations of individuals and groups within intersecting power relations shape intellectual production ” (Collins, p. 47). Complexity includes how “intersectional knowledge projects achieve greater levels of complexity because they are iterative and interactional, always examining the connections among seemingly distinctive categories of analysis ” (Collins, p. 47). Collins (2019) identifies social justice as the final construct central to intersectionality and that “raises questions about the ethics … [of its] scholarship and practice” (Collins, p. 47). Collins (2019) describes that the guiding premises of intersectionality are: (1) “Race, class, and gender as systems of power are interdependent. (2) Intersecting power relations produce complex social inequalities of race, class, gender, sexuality, nationality, ethnicity, ability, and age. (3) The social location of individuals and groups within intersecting power relations shapes their experiences within and perspectives on the social world. (4) Solving social problems within a given local, regional, national, or global context requires intersectional analyses.” (p. 48) Within the context of this study, intersectionality was used to theorize: (a) how intersecting systems of power positioned people, on a structural (e.g., within organizational documents) and interpersonal (i.e., between patient- provider) level, and how this shaped people’s emergency department experiences; and (b) how this positioning produces inequities in an emergency department setting. 26 3.2 Stigma Stigma is a process that is influenced by larger societal, cultural, political and economic forces and involves several components including the labelling of human differences, stereotyping, the separation of “them” from “us”, discrimination and status loss, and the exercise of power (Link & Phelan, 2006; Public Health Agency of Canada, 2019). Labelling is where “people identify and label human differences” that are formed through a “social selection process [that] determin[es] which differences are deemed relevant and consequential, and which are not” (Link & Phelan, 2006, p.528). Stereotyping is where the “labelled person is linked to undesirable characteristics” (Link & Phelan, 2006, p. 528). The separation of “them” from “us” involves “believing that negatively labeled persons are fundamentally different from those who don’t share the label” (Link & Phelan, 2001, p. 370). Status loss and discrimination include how people who are labelled are “devalue[ed], reject[ed] and exclude[ed]” (Link & Phelan, 2006, p.528). The exercise of power includes how stigma is “entirely dependent on social, economic and political power” (Link & Phelan, 2001, p. 375). Specifically, organizational cultures, including those within health care, can influence stigmatizing practices. Stigmatizing practices can prevent “people from obtaining the resources they need to achieve optimal health such as education, employment, housing and health services” inequities (Public Health Agency of Canada, 2019, p. 20) and can impact peoples’ health and perpetuate and deepen health and social. Stigmatizing practices can “manifest in [things such as] stigmatizing language, making assumptions, breaching confidentiality and denying care or access to treatment” (Public Health Agency of Canada, p.32). Within the context of this study, the concept of stigma was used to theorize how: (a) the culture within the organization and emergency department may influence stigmatizing practices, 27 through things such as hospital policies, procedures and mission statements; (b) how stigma is enacted by health care providers within the emergency department and the meaning this creates when people are accessing the emergency department; and (c) how intersecting forms of stigma produce inequities in health and healthcare. 3.3 Research Methodology A critical ethnographic approach was used for data collection and interpretive description, drawing on critical ethnographic methods was used for data analysis. Ethnography is a methodology that is especially useful for understanding how cultural contexts shape health care experiences (Roper & Shapira, 2000). Critical ethnography is compatible with intersectionality. It is a type of ethnography where researchers “describe, analyze, and open to scrutiny otherwise hidden agendas, power centers, and assumptions that inhibit, repress, and constrain” (Thomas, 1993, pp. 2-3). This methodology was selected to uncover how the healthcare experiences of PWLESH accessing the emergency department are shaped by larger cultural contexts within the emergency department and health care organization. Furthermore, as critical ethnography aims to produce social change through the emancipation of oppressive dominant ideologies, it was fitting to understand the factors that would positively contribute to providing equitable health care in the emergency department for PWLESH (Thomas). 3.4 Study Setting This study was conducted at two emergency departments located in two different Western Canadian cities. Both emergency departments were in urban settings that serve people who experience homelessness and health and social concerns associated with substance use. 28 3.5 Negotiating Site Entry My thesis committee members and I had previously established relationships with leadership and front-line staff at both emergency department sites. Site entry was negotiated for this study drawing on these relationships. In order to gain access to the sites for this current study, I communicated with various levels of leadership including the emergency department directors, managers, nurse educators, charge nurses and front-line staff via email and in-person meetings. The nurse educators at both sites were particularly helpful in organizing third party recruitment and establishing relationships with front-line staff. 3.6 Sampling, Recruitment and Data Collection Aligning with critical ethnography, a combination of data sources were used including observations, semi-structured interviews and emergency departmental and organizational documents (Thomas, 1993). All data was collected over the span of approximately two weeks (i.e., Feburary 5th to 20th, 2020). 3.6.1 Observations. General observations were undertaken at the two emergency departments with the majority conducted at one of the emergency department sites to remain within the scope of a masters thesis. Observations were made about the emergency department environment as well as interactions between patients and emergency department staff. Details on the focus of observations is included in the participant observation guide (see Appendix C for Participant Observation Guide). A total of thirty hours of observations were conducted and were completed on different days of the week and at different times of the day between 0700h and 2230h. The thirty hours of observation included general observations, observations during all interviews, and observations of two interview participants’ emergency department care. All observations were 29 recorded as field notes. Patients were recruited for observations using third party recruitment. Staff including social workers and substance use liaisons/addiction nurses provided patients they saw who met the study criteria with a study poster and determined their interest (see Appendix D for the Patient Study Poster). Staff doing third party recruitment were given a script to use to recruit participants (see Appendix E for Recruitment Script). If patients expressed interest in participating, I met with them and introduced myself, discussed the study, consent process and invited their participation. I then approached all staff who were involved in the care of the patients who had given me permission to observe their care and introduced myself, provided them a copy of the study poster, discussed the study, consent process and invited their participation (see Appendix F for Staff Study Poster). Informed verbal consent was obtained from patient and staff participants who were included in observations (see Appendix G and H for Informed Verbal Consent Form for Observations – Patients and Staff). Informed verbal consent was obtained from patient participants, recognizing that informed written consent may be perceived as a means of formalizing or legalizing the consent process and be interpreted as a distrust on the part of the researcher. Consent forms for patients were specifically designed without words that might identify the person being as someone with lived or living experience of substance use to avoid compromising participants safety (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada, 2018). A consent log was maintained for both patients and staff (see Appendix I for Informed Verbal Consent Log). One master list was maintained and included participants first name and study ID. The purpose of this master list was to ensure I was able to keep track of which staff and patients consented (see Appendix J for Master List). The inclusion criteria for patient observations were: (a) age 19 or over, (b) able to understand and 30 speak English, (c) presented for care at a participating emergency department when recruitment was conducted, (d) self-identified as having lived or living experience of substance use, (e) self-identified as having living experience of homelessness, and (f) able to provide informed consent. The inclusion criteria for staff observations were (a) age 19 or over, (b) able to understand and speak English, and (c) staff member of a participating emergency department site. If participants (i.e., patients or staff participants) did not meet the inclusion criteria, they were excluded from the study. 3.6.2 In-depth Interviews. Participant observations informed the interviews I conducted including the questions I asked (Thomas, 1993). Purposive sampling was used to selectively sample PWLESH for interviews. The same approach used to recruit patient participants for observations was used for interviews. Those who participated in observations were also given the opportunity to participate in an interview. Interviews were semi-structured in nature and an interview guide was used (see Appendix K for Interview Guide). Throughout the interview, probes were used to invite participants to further discuss their emergency department experiences and the meaning it had for them. The probes that were used were unique to each interview but all related back to the purpose of the study. For example, open-ended questions were used to invite participants who spoke about previous emergency department experiences to further discuss the meaning this had for them when thinking about accessing the emergency department in the future. Demographic information and information about participant’s social circumstances were also collected from participants (see Appendix L Patient Demographic Survey). This survey was developed using questions from the aforementioned study in equity oriented health care. Demographic information and information about social circumstances were collected to ensure I purposively 31 sampled participants from diverse backgrounds and to better understand the larger context of peoples’ lives and the meaning this had for their emergency department visit. Participants were given the option of completing their interview within five days of their emergency department visit. However, all participants chose to complete the interview when they were admitted to the hospital (i.e., had completed the emergency department portion of their visit) or after they were discharged from the emergency department but before leaving the hospital. Informed verbal consent was obtained prior to beginning the interview (see Appendix M for Informed Verbal Consent for Interviews – Patients). The same verbal consent log and master list was maintained as described in the section above on observations. All interviews were audio-recorded with participants’ permission, transcribed verbatim by a professional transcriptionist and checked for accuracy by myself. The inclusion criteria for interviews was the same as it was for patient observations. Altogether, a total of twelve participants completed an in-depth interview. Interviews were between five and fifty-four minutes in length and averaged around twenty-three minutes. Participants’ ages ranged between twenty-two and sixty-seven and participants’ age was almost evenly distributed across ten-year age group intervals (see Figure 1). Seven people identified as male, four identified as female and one person identified as non-binary. Two people identified as Indigenous and a third person identified as non-status Indigenous. People identified their ethnicity in a variety of ways including as: Caucasian, Portuguese, Native, Black, Scottish-Welsh-Cree, Canadian, Canadian-German-Scottish (Wallace) and Other Bits Mixed In, City Girl/Surrey Girl, Canadian-American- German and Native-Irish. Two people also identified their ethnicity as White. Five people were living on the street, three people were living in a shelter, two people were living in public, supportive or social housing, one person was living in a rental 32 house and one person was living in a shed. All participants were currently unemployed, of which seven people were receiving disability benefits and four people were receiving social assistance. One person was receiving neither disability benefits nor social assistance. Ten people identified it was very difficult to live on their total household income and two people identified it was somewhat difficult to live on their total household income. Figure 1 Number of participants by age group 3.6.3 Hospital Documents Building from observations and interviews, seven hospital documents were examined that enabled me to examine in greater detail the social context of practices observed and patients’ experiences. The purpose of this was to understand the possible relationships between what the documents conveyed, and the care people received. The seven hospital documents included three policies and procedures related to violence prevention, harm reduction and “prohibited weapons and suspected illicit substances” and four signs and brochures related to substance use, violence in the emergency department, prescribing pain medications and the Choose ER Wisely campaign. 0123420-29 30-39 40-49 50-59 60-69Number of ParticipatnsAge GroupNumber of Participants by Age Group33 3.7 Data Analysis Drawing on critical ethnographic methods, data analysis was done on an ongoing, iterative basis. As discussed above, participant observations informed in-depth interviews and the selection and retrieval of hospital documents. Data was collected until re-occurrent patterns emerged the data occurred and when connections between observations, interviews and hospital documents provided a fulsome understanding of participant (i.e., patient participant) experiences. I began data analysis by immersing myself in the data (Thorne, 2008). I listened to each of the audio-recordings while simultaneously reading the transcripts and also read my interview notes. This provided an understanding of the interview as a whole and allowed me to pay attention to things such as the tone, words, phrases and pauses and the meaning it had (Thorne). After this, I used an inductive approach to code the data (Thorne). I began low level coding where I highlighted words or parts of sentences that revealed patterns within each transcript and jotted notes down in the margins about preliminary ideas. I then identified patterns across transcripts. In this step, I grouped the patterns that I saw and wrote out the words or parts of sentences on paper. I formed three categories based on the patterns that emerged: (a) interpersonal relationships, (b) impact and consequences of negative interpersonal relationships, and (c) suggestions for improving care. Guided by coding techniques detailed by Thorne (2008) I purposely made these categories general and resisted any sort of significant investment in the names of the categories. Following this, I went back and re-read the transcripts and highlighted words, sentences and sections using a designated colour scheme. I also made notes of anything that seemed significant and did not seem to fit (Thorne). Drawing on Intersectionality and Stigma theoretical frameworks, I further analyzed the data within these categories. I created maps to help facilitate ideas and relationships within and 34 across the categories that illustrated the context of patient care experiences in the ED. After this process, the initial three categories changed to: (a) stigma and discrimination was pervasive and had a profound impact on access to care; (b) practices and policies overlooked the larger context of peoples’ lives and scarce community resources; and (c) rare, positive experiences, aligned with suggestions on improving care. The first category included several subthemes: (a) previous experiences of stigma were continuous with current experiences, (b) stigma narrowed healthcare providers’ focus on substance use, (c) significant efforts made toward navigating stigma, (d) stigma perpetuated and deepened health and social inequities, (e) anticipated stigma deterred future access to care, (f) stigma fueled negative perceptions and violence against participants, and (g) stigma was perpetuated: from provider to provider and in hospital policies. I sought ongoing input from my thesis supervisor throughout these steps. After consulting with my thesis supervisor and committee members as a whole, these categories changed once more to: (a) experiences of stigma, (b) effects of stigma, and (c) recommendations for equitable healthcare. 3.8 Rigor Several measures were taken to ensure study rigor, also commonly referred to as study validity or trustworthiness (Polit & Beck, 2017). Rigor includes five criteria: (a) credibility, (b) dependability, (c) confirmability, (d) transferability, and (e) authenticity (Polit & Beck). A number of strategies were used to meet these criteria during data collection, analysis and in presenting the findings. During data collection, I spent thirty hours conducting observations, completed twelve in-depth interviews and reviewed seven hospital documents. The data was also purposely collected over a two-week time period, at different times of the day and different days of the week, and interviews were completed at two different emergency department sites. 35 Interviews were audio-recorded, transcribed verbatim and checked for accuracy. An audit trail was maintained which included interview transcripts, hospital documents, field notes and methodological notes. While analyzing the data, my thesis supervisor and two thesis committee members were involved in data analysis and interpretation and I employed negative case analysis throughout the analysis, where I looked for cases (i.e., participant experiences, hospital documents, observations) that “appear[ed] to disconfirm earlier hypothesis” (Polit & Beck, p. 567). In presenting the findings, thick, vivid descriptions and interview quotes were drawn on to demonstrate valid interpretations of the findings. Furthermore, detailed descriptions of participants, including their demographics, the emergency department settings and the findings were provided. 3.9 Reflexivity I maintained a reflexive practice throughout the research process from designing the study to making conclusions. Reflexivity may be defined as “the process of internal dialogue and critical self-evaluation of researcher’s positionality as well as active acknowledgement and explicit recognition that this position may affect the research process and outcome” (Berger, 2015, p. 220). I was reflexive about my position as Registered Nurse who has worked in both emergency department and community settings with PWLESU and as a research assistant for the equity study. Throughout the research process I was reflexive about my own “motivations, assumptions, and interests in the research process” (Finlay, 2002, p. 536). For example, while designing the study, I was reflexive about my own values and beliefs and how that might shape the research questions. While collecting data, I was reflexive about what probing questions and how I asked them while conducting interviews and whose voices (i.e., patient participant interviews) I heard from and why. During data analysis I was reflexive about the conclusions I drew including how I 36 interpreted the data, avoiding early conclusions and whose voice was being represented. For example, it seemed apparent throughout data collection and analysis that people had extremely frustrating and stigmatizing encounters. I had to maintain reflexivity about whether this was true for all participants and at each one of their ED visits. I thought about the meaning it had for people who had encounters where their concerns were legitimized and were able to obtain the care they needed. 3.10 Ethical Considerations Several measures were taken prior to, during and after data collection to ensure the ethical principles, outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, were upheld (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada, 2014). The ethical principles outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans include respect for persons, concern for welfare, and justice (Canadian Institutes of Health Research et al.). Prior to data collection, I applied for and received harmonized ethics approval from the Research Ethics Boards for the two involved health authorities in January 2020. In addition, I sought input from experiential experts on the research materials including the interview guide, demographic survey and study posters. Input was sought about the language, wording, and layout of study materials which helped avoid unnecessary harm to participants. Experiential experts provided extremely helpful input on the study materials. Most of the input provided was related to reducing the number of details on the study posters and changing the language in all study materials to wording that was non-stigmatizing. 37 During data collection, free, informed and ongoing consent was obtained from patient and staff participants. Renewal of consent was obtained after any change in care process (e.g., a procedure being started, being moved to a new location). During data collection, I was also mindful of cues from participants’ body language and verbal expressions of discomfort during interviews and observations. A safety protocol was used to guide my actions in such instances (see Appendix N for Safety Protocol). This study protocol was adopted with permission from the equity study. To eliminate any impact that the research might have on participants’ physical, economic and social circumstances, patient participants who completed an interview were provided with an twenty-five dollar cash honorarium (Canadian HIV/AIDS Legal Network, 2006). Experiential experts who provided input on the study materials were also provided a cash honorarium of thirty dollars. During and after data collection, all hard files (e.g., consent forms) were stored in locked cabinets and audio-recording files and electronic interview transcripts were encrypted and stored on a password-protected server to protect the data. Only members of the research team including myself, Drs. Collen Varcoe, Vicky Bungay and Bernie Pauly and Elder Roberta Price have access to this data. Finally, all interview transcripts were removed of all identifying information and was identified only with unique ID numbers/letters. 3.11 Study Limitations I observed the care of people accessing care in the emergency department and interviewed 12 people receiving care. The sample did not include people who did not access care in emergency departments altogether. People who do not access care in emergency departments likely experience the most stigma and barriers when accessing care. Furthermore, this study did not capture the experiences of people who left the emergency department before care was 38 completed. This includes people, for example, who may have had upsetting care experiences and who may have left the emergency department before they were invited to participated. People who leave before care is complete also likely experience significant barriers, including stigma when accessing care. 3.12 Chapter Summary In this chapter, I discussed the theoretical underpinnings used for the study and detailed the approach I used including the methodology, setting, sampling and recruitment, data collection, and data analysis. I also reviewed the strategies and procedures I employed to ensure rigor and to uphold ethical principles. Finally, I concluded acknowledging several limitations of the study. 39 Chapter 4: Findings In Chapter Three I discussed the methodology, methods and theoretical framework that were used to collect and analyze the data. I also presented details about the interviews and observations that were conducted and the documents that were reviewed. In this chapter, I present the findings from the analysis. I begin by providing an overview of the findings and then present the three main themes. 4.1 Overview This study examined the emergency department experiences, specifically in terms of access, of PWLESH and how the culture within the emergency department and larger organization influenced these experiences. This study also examined what might positively contribute to providing more equitable care. Three major themes were identified: (a) experiences of stigma, (b) effects of stigma, and (c) recommendations for equitable healthcare. Participants overwhelmingly described that they experienced multiple intersecting forms of stigma, including those related to substance use and homelessness within emergency department encounters. Participants also explained that emergency department staff were inattentive to the impact that the larger social context of their lives and inequitable access to resources (e.g., safe and adequate housing) had on their health and access to healthcare and social services. Hospital documents including policies, procedures, and signs set the tone for and reinforced such practices, demonstrating how such practices were influenced by a larger emergency department and organizational culture. These intersecting dynamics had a profound impact on whether participants were able to access and receive the care they needed and subsequently, perpetuated and deepened the health inequities participants experienced. 40 Participants provided several suggestions on how to improve care and make it more equitable which revolved around providing non-judgmental and respectful care. 4.1.1 Experiences of Stigma The majority of participants described current or previous emergency department visits where they had been stigmatized by healthcare providers. Within each of these encounters, participants experienced multiple forms of stigma including stigma related to substance use and homelessness. Participants described that even prior to arriving at the hospital, they were judged, discredited and dehumanized by ambulance personnel. Participants perceived that ambulance personnel deemed them unworthy and undeserving of care. For example, one participated stated: Participant J “They [ambulance personnel] can’t help but look around, you know, you can see them look around your house or at your dirty feet or whatever…”. The same participant described how the ambulance personnel refused to assist her to the ambulance in a stretcher and called her demeaning and derogatory names. Participant J “an ambulance driver when they came to pick me up … I couldn’t breathe… [the ambulance personnel] came in and I’m, I’m limping and, you know, I had ran into a wall and I couldn’t even put my shoe on, he knew that, but it didn’t look bad yet, you know, it really didn’t look bad. … at that time I lived on a driveway that comes quite high and he didn’t want to take the bed out and he made me walk it and then when we got to the hospital they quickly put me on a, um, respiratory stuffy, they said I was dead! Cause I couldn’t breathe. … he [ambulance personnel] called me names, he said dirty words, he was nasty… .” Another participant described being stigmatized by ambulance personnel. This participant reinforced how this set the stage for the rest of his visit. The participant explained that the 41 ambulance personnel talked about him in derogatory ways to the triage nurse in the emergency department in front of him. Participant B “I came in an ambulance, the worse ambulance team I’ve ever had. … these two [ambulance personnel] they made me walk, you see how much pain my leg is [in], they made me walk all the way down the driveway to the ambulance. He told me my ambulance has beds only for people that have no heart, no heartbeat, and can’t breathe, I said what? … That’s my ambulance, that’s the rules. Then he wouldn’t even let me lay in the bed in the ambulance, I had to sit in a chair in there… it was excruciating. … He brought me in [to the emergency department] and then when he was admitting me to the [urgent area of emergency department]… he’s shit talking me to the nurse, this is one of these people who has no regard for this as I’m listening to him look right at me, I couldn’t believe it, total bad, bad, uh, interaction with them people… .” Hospital and departmental documents set the tone and reinforced practices within the emergency department. The policy and procedure entitled “Prohibited Weapons and Suspected Illicit Substances” reflected discourses about people who use “illicit substances” as “criminal” and “violent”, perpetuating negative stereotypes. By coupling substance use with weapons, the policy reflected criminalizing discourses of people with lived and living experience of substance use. The policy states, “individuals are not permitted to have possession of prohibited weapons or suspected illicit substances while present in [health authority name] facilities. Consistent with [health authority name] commitment to safety and security, threats posed by or associated with prohibited weapons and suspected illicit substances will be mitigated through action, investigation and/or documentation.” The policy further outlined that police will be contacted in instances where people possess suspected illicit substances. The policy said “[health authority 42 name] Integrated Protection Services (IPS) will liaise with local police and other agencies to report incidents that pose a safety and security concern and to resolve issues related to prohibited weapons or illicit substances. Another policy and procedure titled “Violence Prevention” also reinforced practices within the emergency department. Signs about violence were the most frequent and visible sign displayed in both emergency departments that I observed (see Figure 2). The signs were posted at triage and in most patient rooms. They stated, “violence, foul language and abusive behaviours are not acceptable. Verbal threats or acts of violence will not be tolerated and may result in removal from this facility and/or prosecution”. Furthermore, the policy and procedure titled “Violence Prevention” detailed procedures to be taken for “behaviours assessed/perceived as disrespectful, inappropriate, aggressive or violent (verbal or physical)”. 43 Figure 2 Sign about violence displayed in the ED Participants’ experiences reflected the ideas these two policy and procedures conveyed. Participants described interactions in which they were constructed as “violent” by health care providers and how policies and procedures about violence were enacted by security guards, removing anyone perceived as such from the emergency department. One participant, for example, detailed an experience where healthcare providers dismissed his concern about being dehydrated, apparently with disregard for the reality of the lack of access some people have to basic needs. The participant described how humiliating this was for him and how emergency department staff subsequently had him removed from the emergency department after he stood up for his right to healthcare. 44 Participant H “I’ve had simple things like… a bottle of water, when you come in if you’re dehydrated, you’re obviously fucking dehydrated, they won’t even give you that, those kinds of things like and then you see the guy beside you getting exactly what you’re asking for and they’re smirking and giggling about it and shit right?” Participant H “So I don’t take the shit I give it right back and then they’ll call security and then me I’ve always, you know, I always make something a lot, you know, I make it bigger…something small I’ve got to upgrade it and cascade it and then security gets involved and I won’t go peacefully. If I don’t think I’m in the wrong I won’t move…” Another participant spoke about how security guards physically assaulted and then removed her boyfriend after asking where the exit was. Participant L “But my boyfriend he has face tattoos, okay, and they won’t let him even in this hospital, he OD’s [overdosed] once and he asked where the exit was, they wouldn’t even speak to him, the security escorted him without like, was pinning him down and then security comes in, pounds on him and pinned him to the ground and then pretty much dragged him out.” Participants expressed that instances where security removed people from the emergency department were common among people they knew who experienced homelessness. One participant stated: Participant H “…but they sure do it with a lot of people here, you know, and its usually people I know from the [location in city], down here in [city name]”. One participant described the impact that security guard interactions had on people they knew. This participant explained that he had friends who would not go to the emergency department 45 voluntarily because they had numerous negative interactions with security guards when they went previously. Participant N “…I have a couple friends that are on the verge of, you know, mental disorders and they’re terrified of the system, you know, they’re literally terrified, they are terrified of security guards and they will not come here because every experience they have here is with security. They come to see a doctor and they don’t get to see a doctor, they see security and I mean you can only get beat up by somebody so many times in a uniform where you become scared of that uniform.” My observations aligned with participants’ experiences of security removing people from the emergency department. During my time conducting observations, I observed security guards approach certain people on what seemed to be the basis of their appearance. Security guards approached people who appeared by their clothing to be living in poverty who were sitting calmly and quietly and told them to leave without asking them why they were there or how they could help them. Below is an observation note I made after interviewing a participant who expressed how security guards routinely removed people from the hospital. “[participant name] talked about how people get ‘kicked out’ all the time by security, [in her words she describes the people this happened to as] ‘the homeless people’. This is interesting as [another participant name] also talks about this. While I was in the emergency [department] that morning waiting for her [emergency department] visit to be done, I sat near the [street name] entrance and on several occasions watched security go up to people sitting in the waiting room with their eyes closed and removed them [from the emergency department] without even asking them how they could help them. On one occasion the security guard said something like you can’t come here to sleep.” 46 Another instance during my time conducting observations, there was a patient who was lying on the floor in the emergency department; I wrote down the following note about the interaction between the patient and health care providers: “… one of the nurses said to another nurse ‘people are lying on the floor (referring to a person lying on the floor in the waiting room) … I can’t deal with it … I called security’. The other nurse said, ‘Is that the homeless youth’, to which the first nurse responded ‘yes’. The other nurse said, ‘wasn’t he just supposed to see the [health care provider name] and go?’. Five male security guards arrived, and the patient moved off the floor into a chair in the waiting room. The security guard came to ask the nurse if the patient is discharged. None of the nurses knew. One of the nurses went to find out and told the security guards the patient was discharged. The patient was then escorted out [of the emergency department] by security.” No one approached the patient to ask them what they needed or how they could help. The situation was devoid of any engagement with the patient and represented a missed opportunity to connect the patient with what they needed. Participants also described how health care providers focused on their substance use and held misconceptions of them as “drug seeking”. While posters in most of the triage rooms conveyed messages asking people to be open about substance use in order to provide the “best care possible”, both participants’ experiences and other hospital documents contradicted this. The posters in the triage area conveyed messages that all patients would be asked about substance use in order to provide “the best care” (see Figure 3 and 4). The signs stated, for 47 example, “Questions can save lives. That’s why we ask everyone about their substance use” and “We can’t see substance use. It could affect anyone, so we ask everyone”. Figure 3 Signs about substance use questions displayed in the ED (variation 1) 48 Figure 4 Signs about substance use questions displayed in the ED (variation 2) However, one participant, for example, described how healthcare providers narrowed their focus to his substance use after he was asked questions and was open about it. This 49 participant explained that even though he went to the emergency department because his blood sugar was high, health care providers dismissed his concern and focused on his substance use. Participant C “… they [people at a clinic] checked my diabetes and then that was at twenty-nine which is high and then they brought me to the emergency… then from there they [health care professionals] asked me a bunch of questions and I told them, you know, that I was homeless and substance abuse and all that and then pretty much a lot of things changed after that. And, yeah, so it went from my diabetes to my drug problem.” Another participant expressed that they felt healthcare providers would not help them when they went to the emergency department because they were misconceived to be “drug seeking”. Participant E “I’ve been here multiple times and they’re not helping me because they think I’m drug seeking and shit like that.” Brochures about “prescribing pain medications in the emergency department” were located in various areas of the emergency department and reinforced restrictions around providing pain medications (see Figure 5 and 6). The brochures detailed restrictions around providing refills for lost or stolen medication, prescribing medication for pain “if hospital and pharmacy records suggest prior prescriptions have not been taken as prescribed”, prescribing pain medication “if records indicate past prescriptions from multiple physicians”, prescribing “long acting pain medications such as MS contin or fentanyl patches for chronic, non-cancer pain”. 50 Figure 5 Prescribing pain medication brochure (outside). 51 Figure 6 Prescribing pain medication brochure (inside) Participants’ experiences echoed restrictions about providing pain medications communicated in brochures and stereotypes of people by healthcare providers as “drug seeking”. Participants explained that restrictions around providing pain medication and misconceptions of them as “drug seeking” were associated with their pain being dismissed and resulted in inadequate pain management and withdrawal. For example, one participant expressed healthcare providers ignored his pain entirely and contrasted this to the patient in the room next to him whose pain was addressed. 52 Participant B “I’ve overheard… other people… one guy come in, I heard him in the bed next to me through the curtain… he had something wrong with him inside here, an infection… and it was the third time he’d been back for it, they were offering pain meds… like hand over fist and I’m right next to him and they wouldn’t even answer my call button.” The same participant voiced the sheer and utter level of pain and the severe state of withdrawal that he was left in because healthcare providers ignored his pain. Participant B “…and its so excruciating like they touch it [referring to leg] and I scream and jump out of bed, scream. Why are you not giving me pain [medications] I said, it doesn’t matter who I am or what I am … that shouldn’t matter, if you see someone in that much pain you should deal with it clearly. If somebody is sweating and gurgling and can’t eat, can’t, should deal with that.” I observed a couple of participants in substantial levels of discomfort during my time conducting observations. Below is an excerpt from an observation note I made about one participants’ pain and the nurse’s response. “I finished completing an interview with another participant who was in the same area in the ED as this participant and I approached this participant. He was sitting up, was looking around and rocking back and forth – he appeared extremely uncomfortable. He discussed how uncomfortable he was and that he was trying to make a decision about his pain, including whether he should leave because his pain was so excruciating. … He asked me to let his nurse know he wanted to talk to her. I could not find his nurse anywhere near his stretcher. However, on my way back to the office I was working in, I 53 saw his nurse and let her know …that one of her … patients wanted to talk to her. She said ‘he’s an addict, he’s looking for his meds’ and then continued to walk past me.” Other observations conducted in the emergency department also indicated health care professionals’ negative perceptions and misconceptions of people as “drug seeking”. For example, while I was conducting observations in the triage area, someone approached the triage desk who said they lost their prescription and explained that they had seen the psychiatrist in the emergency department the day prior. After the patient left, a nurse came back into the triage area and said “Did he loose his methadone prescription?” In this instance, this health care provider appeared to make an assumption about the type of prescription the patient had lost, making specific reference to a prescription for a controlled substance, implying judgement when the patient could have lost any prescription. Despite these experiences, participants demonstrated great resourcefulness when accessing care in the emergency department. Participants made significant efforts towards navigating stigma, including healthcare professionals’ misconceptions of them as “drug seeking” to ensure they were able to access and receive the care they needed. One participant imparted that ensuring emergency department staff did not know about his substance use/homelessness was key to getting the care and help he needed. He said: Participant C “But once you have a little bit of stigma and a little bit of default you get treated differently… when you can walk in and they’re really nice to you, if you’re clean and proper. … But if you walk in and you’re stumbling… and you’re not very coherent, you know, they just tell you to sit down and you know, people wait there for hours sometimes if you don’t step up and ask them and become sort of a burden.” 54 Similarly, another participant described that in an effort to ensure their concerns were addressed, they withheld that they were in pain to avoid healthcare professionals’ misconceptions of them as ‘drug seeking’. Participant E “I’m like oh my stomach hurts and I’ve been puking for like two weeks… I’ve been here [emergency department] multiple times and they’re not helping me because they think I’m drug seeking and shit like that. So like now when I come in I always have to be like I’ve been throwing up for two weeks when they ask me if I’m in pain even though I am I have to say no.” The same participant explained that they went to the emergency department with a supportive organization to ensure their concerns were addressed. Participant E “They treat me better when I’m with someone, and that doesn’t go for like a friend. Like they treat me better once they know that I’m with an organization that’s supporting me which sucks because when I come on my own, um, I’m treated like shit so I had my worker, [worker’s name], with me … and you can tell that they were a lot more compassionate and kind and wanted to get down to like what was going on, yeah.” Other participants described relentlessly advocating for themselves to get the help they needed when healthcare professionals dismissed their concerns. One participant reported that she had to incessantly state she was not there for opiates to navigate healthcare professionals’ misconceptions of her as “drug seeking” when she went to the emergency department in severe abdominal pain. Participant L “…they were ignoring me and ignoring me and they had me in the emergency screaming and writhing in pain because I was also not on methadone at the time and I wasn’t planning on coming here but I got an ambulance called and so yeah I 55 laid there all night with no like methadone or anything and I kept just telling them I was willing to not have any opiates I just want you guys to scan me, please. That’s all, I just, I just want you to take care of this, that’s it, that’s all, and then I’ll go…. Just help me and figure this out because I don’t know what’s wrong.” Participant L “Like I didn’t want opiates, I never said I wanted opiates, I told them specifically, yo, I don’t want opiates because they think that we’re here to get free drugs. That’s usually what they think we’re here for, it’s like, nope I’m here for healthcare!” Several participants expressed how stigma was pervasive among health care providers in the emergency department and how this perpetuated negative stereotypes and judgements made about them. This included how stigma was enacted by healthcare providers through various forms of communication. One participant described that stigma was pervasive from one provider to the next and conveyed verbally from shift to shift. Participant J “I noticed once a long time ago that a nurse didn’t like me and then all of a sudden all the nurses didn’t like me, you know you’ve got to be careful of that too, because they do, they talk and they gang up, and that’s what I learned a long way in, a long way ago … they’re like a pack, you know, if there’s somebody has a problem with a nurse then she’s going to tell the next nurse and that shift is going to be hell, if you’re lucky it stays at that shift, you don’t know right?” Another participant expressed that stigma was communicated from one health care provider to another and conveyed in their chart from shift to shift. Participant E “And I feeling like in the system they just write like as much or as little as they want to so when the next person comes in and reads it especially when there’s shift 56 changeover while you’re still here they have, already have this preconceived like idea of who you are as a person.” A third participant illustrated how stigma was insidious among health care professionals and conveyed in his hospital records from visit to visit. This participant discussed that healthcare professionals saw a history of substance use at triage and diminished his concerns about his back pain. He explained that he was initially sent to a less urgent area of the emergency department for his back pain when he had an infection in his spine and was subsequently admitted. He said: Participant I “But then the next time I came in I guess they took a better look at my chart and they put me to fast track [less urgent/non-urgent area of the emergency department]!” Participants also felt healthcare providers were inattentive to the influence that the larger context of their lives and lack of access to basic survival resources (e.g., safe, adequate housing) had on their health and access to healthcare. Ideas about what the emergency department was for were reinforced in emergency department documents including the “Choose ER Wisely” campaign. Posters about the “Choose ER Wisely” campaign were displayed in various waiting rooms in the emergency department. Brochures were also available near the posters and noted the aim of the campaign was to “improve public understanding of available health care options and the importance of attempting to see their own GP [general practitioner] before seeking care in the Emergency Department”. The posters and brochures directed people to access care in other places by calling their family doctor, HealthLink or one’s pharmacist, by checking a website for walk-in clinic locations and wait times, or for mental health concerns, the Crisis Line. The brochure and poster clearly illustrated what the emergency department was for including “critical or life-threatening condition(s)” (see Figure 7). The ideas conveyed in the campaign were inattentive to the fact that the emergency department may be the only viable option for people 57 who face barriers to accessing care in other settings (e.g., no family doctor, no phone, no internet). Furthermore, the “Choose Wisely” campaign was inattentive to complexity of peoples’ health concern(s), including the influence that resources such as housing have on peoples’ health and ability to access health care services. Several participants emphasized how this inattention contributed to them needing to come to the emergency initially and to access care multiple times in the emergency department and other health care settings. Figure 7 Choose ER Wisely poster displayed in the ED 58 For example, one participant, who identified as living on the street at the time, described that healthcare providers discharged her in the middle of the night when she was unwell without considering her current housing situation and what this meant for her health and safety. Participant L “So what brought me in was I had an infection in my face right now… I came in because I was septic… it was getting really bad… they sent me home the same night like I … [had a] fever, I was super not good to go home … and they sent me home at two in the morning… Like how fucking am I supposed to get home? And what the fuck is that, you know I’m homeless? So I had to walk and I don’t even remember half of that walk and I was not using, I was sick but I was so sick and out of it that I don’t even remember any of it, really.” Another participant, who identified as living in a shelter described that health care professionals were unconcerned with anything other than his shortness of breath. Participant G “I came back last time I had, I showed up and I couldn’t breathe and they just kept me for a couple of hours and they cut me loose, threw me back out on the street and I was just as bad as I was this time, if not worse…[they said] we’re just worried about your breathing right and its fine, we’re not concerned, it’s within the limits and that’s what they told me. I had to leave, they give me a script [i.e., prescription] for, for some antibiotics and some puffers…they just cut me loose said, you know, I’ve got a shelter across the street and… just keep looking [for housing] and go see these people here or whatever right they’re more set up for it than we are right? They kind of pass you off on everybody else right say its not up to them right… I guess if I dropped dead or something but, yeah, they’d done everything they could for me.” 59 The same participant emphasized that while he was able to stay at a shelter at night, there was no place for him to be during the day and so his breathing and leg infection continued getting worse. He ended up returning to the emergency department several times because of this. He stated: Participant G “but my feet weren’t getting any better I still had to get up at seven in the morning and trudge all over the place to find a place to, to go for the whole day right? No place to heal, right?” One participant explained that even when emergency department staff referred him to a community program, he was turned away after being told he did not meet the program’s criteria. He emphasized the impact this had on being able to access the help he needed. Participant B “I think that like when it comes to like that like social housing or not, the staff don’t know what certain programs provide or what the rules are for the certain programs. So they direct you to some part of it where when you go there, they’re no, you don’t, no that’s not even you right? … I was told to go to [program name], so I went to [program name], oh you can’t cause you’re on Kadian, right? Or go over there and then they’ll help you, and they’re like, no, no you’ve got to go over here, oh no, you’ve got to go over here…It becomes, um, a revolving door that nothing ever gets done.” 4.1.2 Effects of Stigma Participants expressed that healthcare professionals’ delegitimization of their concerns had a profound impact on whether they were able to access the care they needed and was associated with the perpetuation and deepening of health inequities. The delegitimization of participants’ concerns was associated with participants being discharged with their concerns unaddressed and being forced to leave prior to getting the help they needed. In turn this resulted in having to seek care in another setting or returning to the emergency. One participant, for 60 example, recounted a prior emergency department experience where healthcare professionals misconceived them to be “drug seeking”, and resulted in a misdiagnosis and being forced to seek care in another setting. Interviewer- “…can you tell me more about you said that sometimes they, you feel like they think that you’re drug seeking can you tell me more about that?” Participant E - Participant -“I had self-harm and it was really bad and I couldn’t, I was having a lot of pain in my hand and I couldn’t move my hand properly because I had, long story short, I cut a tendon. And the doctor was like are you in pain and I was freaking out, I was like it hurt so much, it hurt a lot… And he’s like I see that you self-harm often and so you shouldn’t be in this much pain, you’re fine go home. And I like no, no, no, there’s something wrong like there’s definitely like [something] wrong with what’s happening like yes I self-harmed in the past before, I wouldn’t have come to the hospital if, I, I knew that I didn’t need stiches like I wouldn’t have come to the hospital if I wasn’t in pain, you know, I was like listing off all these factors and he was just like you’ll be fine, go home. Then I went to Urgent Care the next day because I didn’t want to come back here and I didn’t come back here for weeks because of that. And I was consistently going to urgent care and they’re like why do you have so much weakness in your hand and I was like well I went to [name of hospital] and they said I was fine and they stitched me up and sent me home and they’re like you’ve cut a tendon… And I had to do like, it was a minor surgery, you know… .” 61 Similarly, another participant described that inadequate pain management left him with no other choice but to leave the emergency department. The participant had to seek care in the emergency department five times for the same health concern because of this. Participant I “Well when I came, I came to emergency like four or five times for this one, for this one thing….two different hospitals… once at [hospital name] and about four times at [hospital name]. What’s been happening is they’re not setting me up quick enough with my methadone and then my withdrawal would set in and so there’s nothing I can do, I’ve got to leave and take care of my habit. I know you don’t know what it is like to be sick from like a physical withdrawal is but it hurts like you wouldn’t believe, its really bad.” The impact of stigmatizing experiences was far reaching and went well beyond participants’ immediate emergency department visit. Most participants described the impact that prior stigmatizing experiences had on whether and how they accessed care. Several participants explained that they did not want to go back to the emergency department after healthcare providers dismissed their concerns. Participant H, who discussed he had “tons of hard times here [at the emergency department]” said: “and sometimes I would just suffer and tough it out [referring to health concern(s)]. You know because it’s a lot easier than coming here”. One participant described the reputation the emergency department had among people who experience homelessness. Participant C “the public automatically assumes that coming into the emergency you’re going to be treated bad that’s still, that’s the diagnosis on the outside.” The same participant said that he knew of people who completely avoided going to the hospital. 62 Participant C “I know a lot of people that don’t come to the hospital right because they won’t, you know, again they can come in, get seen, they think they’re normal and then once they look into the background they’re not normal and then, you know, it’s that… persona is put on them again… .” In some cases, participants delayed seeking care to the point where their health concern(s) became worse because they anticipated stigma. One participant, for example, elaborated that he avoided seeking care for eleven days for an infection because of prior stigmatizing experiences. Participant B “I probably wouldn’t be this bad if I had come sooner … I didn’t come sooner because I was, I knew what this process was going to be like… I laid in my own bed like this suffering for like eleven days hoping it would go away, praying it would go away because I didn’t want to go through this.” Another participant explained that her husband had to convince her to go to the emergency room. Participant J “Yeah I know my husband had to get me to go back to the hospital the second time [referring to current visit]. And I wasn’t going to go, I wasn’t going to go and it was a good thing I did because I was dead when I got there that time too, but, you know, it um, after the first one [referring to previous visit], you know, it was terrible, to come back again, it was very hard.” Some participants discussed that they got to the point where they felt hopeless in being able to get the help they needed. For example, one participant felt hopeless in getting the help he needed to secure housing. He explained that emergency department staff initially sent him to one housing program. However, he ended up being sent from one program to the next when he was told each time that he did not fit that program’s criteria. 63 Participant C “I’m going to find housing and if I have to rent a room until then I’ll go into my savings and blow it if I have to… help is not going to come, you know, I thought help would come, ease my burden, right. But no, it’s not going to do it. I just have to do it myself again like I did the first time.” Another participant expressed feeling hopeless after the hospital discharged him with a leg infection and nowhere to go. Participant G “… But so I thought, actually, I was ready to die, I thought I was going to die. I was just waiting one day… you know a stroke or heart attack or, you know, I’m at that age right? And everywhere I went, you know, all the doctors say, man, you’re in good shape your heart’s strong, this and that… but it’s getting to the point where I wish I was dead almost.” Participants who had emergency department encounters that were not stigmatizing, where health care providers were understanding of the larger context of their lives and attempted to address their lack of access to basic survival resources directly contrasted with other participants who felt hopeless. While participants emphasized these experiences were rare and discussed them within the context of other emergency department experiences that were stigmatizing, participants emphasized the impact such visits had for them. One participant, for example, who went to the emergency department with an infection in her hand, described that emergency department staff were understanding of her substance use and homelessness and were going to help her with it. She stated: Participant D “Yeah like knowing like I told them about my drug issues and about me being homeless like they’re okay with that you know what I mean?...Like they can help you. There’s a social worker that can help you with stuff like that. See that’s really 64 warming you know what I mean, knowing that they’re goanna help with that too. …I had thrown out there right away that I was, um, using and they asked me well what did I want to do about it and I said to get into treatment and they said they can help me with that too. …So that’s a big piece that I’m looking forward to”. This same participant expressed that this encounter Participant D “made life easier” and led to an “understanding that I’m not alone”, directly contrasting participants who felt hopeless in finding help with their circumstances. Another participant, for example, stated: Participant A “It [this visit] wasn’t as bad as some of the others, this one was okay”. This participant explained that his current emergency department was different from other visits where: “it just seems like its [emergency department] a really dark place, they just don’t care and its like a real dissociation with you”. He described that the “vibe” in the emergency department and “attitude” of health care professionals was different this time and that this time he: “was treated with respect and dignity and like a person”. A third participant described the impact that health care professionals’ understanding of the larger context of his life had for him. This participant stated that his nurse: Participant N “could have just treated me like another junkie and just put me through and moved me on right?” However, he expressed that his nurse was understanding of the larger context of his life and how this influenced his substance use. Participant N “I’ve had some several lengthy conversations with some nurses and, you know, I don’t hold anything back, you know, I don’t lie, I don’t uh, I don’t look for sympathy, um, I just tell it the way it is, you know, And, you know… I hope they don’t feel sorry for me. Because I’m not looking for sympathy but, uh, I’m just looking for them to understand why, why, I ended up the way I did, you know. You have a problem 65 and what not, you know, and I would never have used drugs, um, if I never was handed this, this hand. Yeah they understand that and the nurses here are so nice to me that it makes me want to cry inside… .” These participants’ experiences shed light on the impact that a few small actions can have on peoples’ lives, including having a non-judgmental approach to substance use, having understanding toward the larger context of peoples’ lives and connecting patients with healthcare providers that can help them with their social circumstances (e.g., housing). 4.1.3 Recommendations for Equitable Healthcare Many participants provided recommendations on how to improve care and make it more equitable. Predominantly, participants wished for future encounters that were non-judgmental and where they were treated with respect. For example, one participant wished for emergency department encounters where they were treated with respect and that were non-judgmental. Participant L “Honestly just having a little bit more respect with people and that we’re human and not all junkies are fucking assholes and thieves because like I’ve never stolen, I’ve never stolen from anyone.” While many participants wished for future encounters that were non-judgmental and where they were treated with respect, many seemed doubtful this would happen. One participant expressed this doubt after having numerous stigmatizing experiences in the emergency department. Participant H “I wish they’d have some way, I don’t see how it would be possible, rather than categorizing people… like I can’t see how that would happen but if that were removed and you were treated like any other person that would be great too, I’d love for that to be different, I can’t see it happening but that would be awesome.” 66 Participants further explained that non-judgmental and respectful encounters included encounters where healthcare professionals legitimized and addressed the concern(s) that they sought care for. For example, one participant described this in the context of another visit where she was perceived to be “drug seeking” and where she had to relentlessly advocate for herself to navigate stigma to ensure her concerns were addressed. Participant L “I think to change here is treat homeless people like everyone else… because we’re not here for drugs, we’re not… we really aren’t… we can literally go to our doctor’s office and get a fucking morphine prescription as much morphine as we want if we want that… like you can go to my doctor’s office has Kadian, dilaudid and fucking heroin program like they’re not here for that they’re here because they need help, they need like to get their health taken care of.” Participants also wished for encounters where healthcare providers were understanding of the larger context of their lives and the impact that scarce community resources had on their health and access to healthcare. For example, one participant expressed the importance of recognizing the impact that inadequate housing had on his health and wished that in the future, health care professionals would take the opportunity to address it before he is discharged. This participant explained that healthcare providers repeatedly discharged him from the emergency department without adequate community support in place, including housing. Participant G “I’d set it up so that if a guy hasn’t got a place to go you must take care of him right. Gotta at least make sure that he’s going to be healthy, don’t throw him back out on the street if there’s you know, he’s still, he’s not healthy right? … just because his breathing is good and his legs aren’t falling off that’s no reason to send him home right … you should have the right to have a warm place to go and have a meal right? … should 67 at least have a place where a guy can go and put his feet up and can get well and at least get dry you know.” Participants also wished that healthcare providers were better able to connect them to the right community programs. One participant suggested that emergency department staff receive education about outpatient programs and resources that are available. This was a participant who was sent from program to program, and repeatedly told he did not meet the programs criteria. Participant C “…maybe they should have a course, you know, like, you know, just a, to get, tell them, you know, what resources are there for certain people right, for the patients right? One participant expressed that he specifically wanted security to receive education about substance use and mental health and learn about the influence that scarce and inaccessible community resources had on peoples’ health and ability to access health and social services. Participant N “I would want the security to, to learn about addiction, learn about mental health, learn that people with a mental health aren’t addicts, they don’t do drugs, they have a mental problem. And the system has kicked all the people with mental problems out onto the street and they end up at the hospital because they don’t know where else to go, this is where they’ve lived their life and this is where they know to come for help. Now the security thinks they’re all on drugs they beat them up and they beat them up good and they beat up the girlfriends and they beat up everybody. If you listen to all the code whites that go on in this place it is stunning and a code white is a, an interaction with a security guard and a person right? And that’s what I, I could beg god to change that.” 68 4.2 Chapter Summary In this chapter I discussed the findings of the study based on twelve in-depth interviews, thirty hours of observations, and a review of seven hospital documents. I identified three themes from the data including: (a) experiences of stigma, (b) effects of stigma, and (c) recommendations for equitable healthcare. In the next chapter, I summarize the findings and situate them within existing literature and speak about the implications they have for practice and education, policy and future research. 69 Chapter 5: Discussion In this chapter I begin by summarizing the findings. I then discuss how these findings align with the current body of literature on the experiences of PWLESH accessing health care services. Subsequently, I highlight the unique contributions this study makes to existing literature. I conclude by reviewing the recommendations participants made to improve care, situating it within existing literature on providing equitable care. I discuss the implications this study has in terms of policy, practice, and future research. 5.1 Summary of Findings This study revealed that participants’ emergency department experiences were fraught with stigmatizing and discriminatory care encounters. Participants detailed how they felt judged and dehumanized by healthcare providers and how their concerns were delegitimized by health care providers when accessing care in the emergency department. Participants also discussed how healthcare providers were inattentive to the larger context of their lives and the impact that their lack of access to basic survival resources had on health and access to health care. Participants explained how inattention to the larger context of their lives and their lack of access to basic survival resources contributed to their need to visit the emergency department in the first place and subsequently. Hospital documents such as the “Choose ER Wisely” campaign, brochures about prescribing pain medication in the Emergency Department, and policies, procedures and signs about violence and prohibited weapons and suspected illicit substances set the tone for and reinforced such practices, demonstrating how those practices were influenced by a larger emergency department and organizational culture. These intersecting dynamics had a profound impact on whether participants were able to access and receive the care they needed and subsequently perpetuated and deepened the health 70 inequities participants faced. Participants explained that the delegitimization of their concerns resulted in them being discharged with their concerns unaddressed, being forced to leave before they received the care they needed and/or being physically removed from the emergency department by security guards. For some participants, this meant having to access care again in the emergency department or another health care setting. Ultimately, these experiences were associated with participants anticipating stigma and delaying future care and/or avoiding care completely. Few participants spoke about current encounters that were non-judgmental, where they were treated with respect, their concerns were legitimized and where attention to the larger context of their lives afforded them the opportunity to access and receive the care they needed. Such encounters were discussed as contrasting with most emergency department experiences. Participants provided several recommendations on how to improve care in the emergency department and make it more equitable. These recommendations included providing care that is non-judgmental, where they are treated with respect and where their concerns are legitimized. In addition, participants also made recommendations about increasing education for emergency department staff on available and appropriate outpatient community resources. A recommendation was made specifically to increase education for security guards on substance use and mental health and the influence that scarce and inaccessible community resources has on peoples’ health and ability to access health and social services. 5.2 Situating the Findings within Existing Literature and its Unique Contributions These findings align with the current body of literature on the health care experiences of PWLESH accessing general health care services. A prominent theme in existing literature is that people experience stigma and discrimination related to substance use and/or homelessness within health care encounters (Bungay, 2013; Butters & Erickson, 2003; Christiani et al., 2008; Drumm 71 et al., 2003; Goodman et al., 2017; Hudson et al., 2010; Lang et al., 2013; Markwick et al., 2015; Marlow et al., 2010; McNeil et al., 2014; Mulia, 2002; Neale et al., 2008; Nicholas et al., 2015; Paquette et al., 2018; Pauly et al., 2015; Santos Cruz et al., 2013; Summers et al., 2018; Sznajder-Murray & Slesnick, 2011; Weiss et al., 2004). This was also the prominent theme in this study. The findings of this study are also similar to current literature in that participants described being misconceived by healthcare providers as “drug seeking” (Bungay; Goodman et al.; McNeil et al.; Pauly et al.; Summers et al.; Weiss et al.). Participants explained that misconceptions of them as “drug seeking” were associated with a plethora of practices that delegitimized their concerns (e.g., diminishing peoples’ level of pain, refusal of pain medication). Furthermore, the impact and consequences of stigmatizing and discriminatory care, including leaving prior to the completion of care, delaying seeking care and avoiding care shown in this study echo existing literature (Boeri et al., 2011; Bungay; Goodman et al.; Markwick et al.; Mulia; Paquette et al.; Pauly et al.; Weiss et al.). This study provides unique insight into how structural violence, in the form of stigma, perpetuates and deepens inequities among PWLESH accessing the emergency department. Structural violence: is one way of describing social arrangements that put individuals and populations in harm’s way. The arrangements are structural because they are embedded in the political and economic organization of our social world; they are violent because they cause injury to people. (Farmer, Nizeye, Stulac, & Keshavjee, 2006, p.1686) More specifically the findings of this study demonstrate how stigma manifests in organizational and hospital documents and is enacted by healthcare providers. Stigma was associated with unjust and undue harm; people were forced to leave prior to receiving or completing care, were 72 discharged or physically removed by security guards with their concerns unaddressed, and ultimately avoided or delayed accessing care. Furthermore, this study, in concert with existing literature, imparts an understanding of the context surrounding why people access care frequently and more than once (i.e., return for care again for the same problem) in the emergency department. Existing literature indicates the multitude of barriers people experience accessing primary care and walk-in clinic services, such as stigma and discrimination and limited hours services (Browne et al., 2011; Bungay, 2013; Khandor et al., 2011). This study highlights how stigmatizing and discriminatory care encounters, including the delegitimization of peoples’ concerns and inattention to the larger context of peoples’ lives and lack of access to survival resources contributes to people having to access care repeatedly in the emergency department. This study also offers insights about why PWLESH may be more likely to leave prior to the completion of treatment, be readmitted within 14 days after leaving, have multiple re-admissions one year after and have higher all-cause in-hospital mortality compared to those who do not leave (Choi et al., 2011; Ti et al., 2015). 5.3 Implications for Policy, Practice and Future Research This study has several implications for practice and education, policy, and future research. 5.3.1 Policy and Practice The culture within the emergency department and the larger hospital, conveyed in hospital documents align with neoliberal ideologies. Neoliberalism see that “we are… our own products; what happens to us is entirely due to our own efforts and the greatest good is that which frees individuals from any constraints” (Bryant, Raphael, & Rioux, 2010, p. 68). Understandings of substance use based in a neoliberal view lack attention to the larger context in 73 which substance use is situated including historical, political and economic “constraints”. Substance use, through a neoliberal lens, is seen in this way: individual failure and lack of personal responsibility. The prohibition and criminalization of substance use, including arrest and incarceration are examples of practices that reinforce these notions (Canadian Nurses Association, 2017b). Studies to date, have demonstrated the harm associated with criminalizing approaches to substance use (Markwick et al., 2015; McNeil et al., 2014; Pauly et al., 2015; Wood et al., 2004). Criminalizing approaches to substance use, aligning with ideas that see substance use as an individual failure were evident within the emergency department and larger organizational documents. The policy and procedure including “Prohibited Weapons and Suspected Illicit Substances” set the tone for and reinforced practices within the emergency department, criminalizing substance use. The coupling of weapons and substance use further portrayed negative stereotypes of people with lived and living experience of substance use not only as “criminal” but also as “violent”. Additionally, the policy and procedure entitled “Violence Prevention” and signage about violence was enacted by healthcare providers and followed through by security guards in which people perceived as such were removed from the emergency department. Deeply concerning was how routinely people were removed from the emergency department, demonstrating the extent to which these processes were embedded within the emergency department. Stigmatizing practices, including how participants felt health care providers focused on their substance use and held misconceptions of them as “drug seeking” also represented views of substance use as an individual failure. Hospital documents including the brochure, “prescribing pain medications in the emergency department” further reinforced restrictions about providing 74 pain medication, setting the tone for such practices. The impact of stigmatizing practices, including how participants explained that their concerns were diminished and delegitimized and deemed unworthy of care by healthcare providers further represented understandings of substance use as an individual failure and those that use them as deviant from the “social norm”. Participants descriptions of the negative perceptions that healthcare providers held echo literature that shows that health care providers hold negative perceptions of PWLESH and that they are “undeserving of care” (Ford, 2011; Hoskins et al., 2005; Ibragimov et al., 2017; MacKridge & Scott, 2009; Mclaughlin et al., 2006; Neville & Roan, 2014; Peckover & Chidlaw, 2007). Neoliberal ideologies are also evident in healthcare in how “efficiency considerations have come to trump considerations of quality of care in the implementation of a great deal of health and health care policy” (Rodney, Buckley, Street, Serrano, & Martin, 2013, p. 188). Within this study, policies and procedures including the “Choose ER Wisely” campaign reflected neoliberal ideologies including characteristics of efficiency, and the identification of “a manageable problem” (Varcoe & Rodney, 2011, p. 101). “Choose ER Wisely” posters in the emergency department directed people to seek care elsewhere for anything other than a “critical or life-threatening condition”, diverting people away from using the emergency department for non-urgent care. This undermines the lack of choice that people have in deciding where to access care. It ignores evidence showing that PWLESH face barriers when accessing care in other settings which may leave the emergency department as the only viable option (Boeri et al., 2011; Bungay, 2013; Butters & Erickson, 2003; Christiani et al., 2008; Hudson et al., 2010; Kumar et al., 2018; Markwick et al., 2015; McNeil et al., 2014; Nicholas et al., 2015; Pauly et al., 2015). The “Choose ER Wisely” campaign also reinforced what the emergency department was for, drawing attention from the complexity of peoples’ health concerns. In this study, participants 75 described how health care providers were inattentive to the larger context of their lives and the impact that their lack of access to survival resources, such as housing, had on their health and access to healthcare. Such inattention was associated with people having to access care repeatedly in the emergency department and some participants reached the point where they gave up hope in finding help with their needs. Altogether, these policies, procedures and signs operated in unison to set the tone for and reinforce practices within the emergency department. In turn, these practices disadvantaged participants who had lived and living experience of substance use and homelessness, perpetuating and deepening the inequities they faced. Efforts towards reducing and ameliorating inequities among PWLESH within the emergency department must include interrogating the dominant ideas on which the emergency department and organization documents as well as practices are based. As opposed to an approach that criminalizes substance use and sees substance use an individual failing, a harm reduction approach includes practices, policies and procedures, for example, that are non-judgmental and that do not discriminate against PWLESH. It includes both “downstream” approaches such as the provision of naloxone kits or safe consumption supplies and “upstream” approaches that aim to reduce the social-structural factors (e.g., housing) that influence the harms of substance use. The policy brief Indigenous harm reduction = Reducing the harms of colonialism (Interagency Coalition on AIDS and Development, 2019) emphasizes the importance of focusing on “upstream” factors in addition to “downstream” factors. The policy brief states that “focusing on substance use, for example, without, also addressing racism, trauma, poverty, homelessness, or other determinants of ill health, will do little to change a person’s circumstances long term” (Interagency Coalition on AIDS and Development, p. 8). The policy brief goes on to say that “this [little change will occur] is also true when the focus of harm 76 reduction is on individual change while ignoring the systems and structures within which the individual must operate” (Interagency Coalition on AIDS and Development, p. 8). These changes were echoed by participants. Participants recommendations to make care more equitable included providing care that is non-judgmental, where they are treated with respect and where their concerns are legitimized. Recommendations for improving care also included increasing emergency department staffs’ understanding of socio-structural factors (e.g., housing) that influence substance use and how a lack of access to survival resources impact peoples’ health and ability to access care. 5.3.2 Future Research This study brought to light the influence that policies, procedures and other hospital documents have on practices and how they reflect a larger organizational and emergency departmental culture. Studies to date have explored the impact of interventions aimed to reduce stigma on an interpersonal level (Livingston, Milne, Fang, & Amari, 2012). As this study suggests, future research is needed on interventions aimed at reducing stigma at an organizational and departmental level and that disrupt policies and procedures and other hospital documents that influence inequitable practices within the emergency department. Future research might include conducting an up to date scoping review of interventions aimed at reducing stigma within hospital settings. Peer or experiential expert engagement is important in “designing health and policy solutions… to mitigate equity issues through capacity building and empowerment” (The Peer Engagment and Evalution Project, 2018, p. 3). As such, future research might also include examining how peer engagement has been incorporated within hospital settings to date, the barriers and facilitators to peer engagement, specifically in terms of the culture within the hospital and the impact(s) that it has had. 77 5.4 Conclusion The findings of this study revealed the experiences, specifically in terms of access, of PWLESH accessing the emergency department. Predominately, participants experienced multiple forms of stigma and discrimination when accessing care. Participants also discussed that staff were inattentive to the larger context of their lives and the impact that their lack of access to survival resources had on their health and access to health care. These intersecting dynamics had a profound impact on whether participants were able to access and receive the care they needed. A review of hospital documents, including policies and procedures, signs, brochures and campaigns revealed stigmatizing discourses and reflected a larger organizational and emergency department culture. Observations also shed light on the influence that these documents had on practices within the emergency department, including those that perpetuated and deepened inequities participants faced. This study imparted several recommendations to improve care in the emergency department for PWLESH. 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Health Promotion and Chronic Disease Prevention in Canada, 38(6), 248–251. https://doi.org/10.24095/hpcdp.38.6.05 94 Appendices Appendix A Literature Review One Search Terms Database Type of Words Concept One: People with lived and living experience of substance use and homelessness Concept Two: Health care experiences CINAHL Subject headings • MM Substance Abusers+ • MM Street Drugs+ • MM Intravenous Drug Users • MH Health Services Accessibility+ • MH Patient Satisfaction+ • MH Health Resource Utilization+ • MH Health Care Delivery+ • MH Healthcare Disparities • MH Patient Attitudes MEDLINE Subject headings • MM Street Drugs+ • MM Drug Users • MM Substance-Related Disorders+ (Including: Epidemiology, Nursing, Psychology ) • MM Health Services Accessibility+ • MM Patient Satisfaction+ • MM Delivery of Health Care • MM Patient Acceptance of Health Care • MM Attitude to Health PsycINFO Subject headings • DE Substance Use Disorder • DE Addiction • DE Drug Abuse • DE Drug Dependency • DE Inhalant Abuse • DE Opioid Use Disorder • DE Drug Addiction • DE Drug Seeking • DE Intravenous Drug Usage • DE Prescription Drug Misuse • DE Health Care Access • DE Health Care Delivery • DE Client Attitudes • DE Client Satisfaction • DE Health Care Services 95 Appendix B Literature Review Two Search Terms Database Type of word(s) Concept one: healthcare providers Concept two: perceptions Concept three: people with lived and living experience of substance use and homelessness CINAHL Subject headings • MH Health Personnel+ • MH Nurses+ • MH Attitude of Health Personnel+ • MH Stigma+ • MH Stereotyping+ • MH Discrimination+ • MH Substance Abusers+ • MH Street Drugs+ • MH Intravenous Drug Users+ • MH Substance Use Disorders+ MEDLINE Subject headings • MH Health Personnel+ • MH Attitude of Health Personnel+ • MH Social Stigma+ • MH Prejudice+ • MH Social Discrimination+ • MH Drug Users • MH Substance-Related Disorders+ • (NOT) MH Tobacco Use Disorder 96 Appendix C Participant Observation Guide Participant Observation Guide Conducting participant observations and writing field notes are a method used in critical ethnography to collect data (Thomas, 1993). I will conduct participant observations that aim to uncover the social processes and interactions that occur and that shape the emergency department care experiences of people who use drugs and who are homeless or at risk of homelessness (Emerson, Fretz, & Shaw, 2011). Aligning with critical ethnography, these observations will focus on the social processes (e.g., values, norms) that position people who use drugs and who simultaneously experience homelessness, evident within the social interactions that occur between this population and the health care professionals providing care (Irwin, 2005; Thomas, 1993). Observations will be made about the emergency department environment as well as interactions between patients and staff. In order to observe interactions between staff and patients, I will partner with social workers and substance use related staff (e.g., substance use liaisons). Third party recruitment will be used whereby when these specific staff are referred to see patients who use drugs and who simultaneously experience homelessness, they will provide patients with a study poster and determine their interest. I will provide these specific staff will a script that they can use to recruit participants. Patients may then express their interest to emergency department staff who can then text me to let me know or patients may text me themselves at times when I am conducting observations in the emergency department. After I receive a text indicating a patient is interested in participating, I will contact the patient in person in the emergency department, introduce myself, discuss the study, consent process and invite their participation. During this process I will make every effort to ensure potential participants understand their participation is completely voluntary and will not affect any aspect of their care. Patients with emergent issues requiring immediate attention will not be approach for recruitment and observations will cease if this occurs. I will also wait until the most appropriate time to approach potential participants meaning waiting for a break between interactions with staff such as time before or after initial registration and triage, assessments, diagnostic tests or treatments. If potential participants decide to participate in the study, informed verbal consent will be obtained prior to conducting observations that include them. I will make every effort to communicate with staff that I partner with, doing third party recruitment, that I would like to observe interactions between staff and patients as early in their visit as possible. This approach will allow me to capture care experiences from all aspects of their visit and understand the factors that will contribute to providing more equitable care throughout patients’ journey. Initial Impressions To begin, Emerson, Fretz and Shaw (2011) suggest that novice researchers begin observing and taking note of initial impressions which, they include as “things available to the 97 senses – tastes, smells, and sounds of the physical environment, and the look and feel of the locale and the people in it” (p. 24). Initial impressions will remain focused on the participants I observe and the people they interact with, their immediate surroundings and features of the environment that have implications for the care they receive. Significant or Unexpected Events – The Researcher and the Participant Moving beyond initial impressions, I will observe and write field notes about incidents that seem “significant or unexpected” (Emerson et al., 2011, p. 24). I will also observe incidents not only that I find significant or unexpected but also observe for incidents that “what those [patients who use drugs and who simultaneously experience homelessness] in the setting experience and react to as ‘significant’ or ‘important’” (Emerson et al., 2011, p. 25). This means observing for events that people who use drugs and who simultaneously experience homelessness react to. Routines As observations continue, ‘routine’ observations will be made and are observations of “how routine actions in the setting are organized and take place” (Emerson et al., 2011, p. 29). As Emerson et al. discuss, this involves focusing less on why things take place and instead how they take place. Similarities and Differences Finally, as I spend more time conducting observations and my observations become more focused, incidents and interactions that are similar will be recorded (Emerson et al., 2011). In addition, I will keep my observations open to incidents and events that are different, or are variations of these similarities (Emerson et al., 2011). Types of Events In all above cases, observations will focus on the social processes and interactions that position people who use drugs and who simultaneously experience homelessness. Interactions occurring between participants and emergency department staff will be recorded. These incidents may be evident of those that oppress and that disadvantage this population or on the other hand be evident of care that is equitable. Where the later may deter people from seeking care and the former creates a place where people feel safe, respected and welcome. In addition, observations will include the emergency department environment as it relates to access to health care in the emergency department. Participant observations will focus on: • How patients are welcomed into the emergency department • How staff build and maintain relationships with patients • How conflict arises and how it is addressed • How patients’ concerns are addressed • How follow up care and resources at discharge are organized and delivered 98 • Descriptions of participants including clothing, ethnicity, position (i.e., whether they’re lying, sitting, standing), demeanor (e.g., calm, angry, sad) and non-verbal expressions, mobility aids • Details about the environment the participant is situated in: o Where people are ‘placed’ in the emergency including the room/space they are in and how this place is situated in relation to the nurses/health care members o The attributes of the room/space and immediate environment including whether it is busy, quiet, and things such as the lighting, signage, level of privacy (e.g., door, curtain) 99 Appendix D Study Poster - Patients 100 Appendix E Recruitment Script There is a researcher present in the emergency department today who is interested in observing the care that people receive. Specifically, she wants to learn what would make emergency room care better when people face difficulties with housing, income or employment and who have lived or living experience with substance use. She is interested in observing the care people receive and/or interviewing people to learn about the care people received during their visit. If you are interested, she would like to meet with you to talk more about what the purpose of the study is, what it entails and the risks and benefits. Your participation is completely voluntary and will not affect your care in anyway and you can stop participating at any time. Is this something you are interested in or want to talk to her more about? Note: If the potential participant is interested in participating, they may either have an emergency department staff call the study’s cell phone using a Fraser Health device or the patient may text and/or call the study’s cell phone themselves using their own phone. Upon expressing interest, I will approach the potential participant, introduce myself, discuss the study, consent process and invite their participation. If participant decides they are still interested after this, informed verbal consent will be obtained and documented in a consent log. 101 Appendix F Study Poster - Staff 102 Appendix G Informed Verbal Consent Form – Observations - Patients Opportunities for Care: Providing Equitable Healthcare in the Emergency Department Informed Consent Form – Observations Principal Investigator: Dr. Colleen Varcoe (UBC) Co-Investigators: Patrice Wright (UBC Graduate Student), Dr. Vicky Bungay (UBC), Dr. Bernie Pauly (UVic), Elder Roberta Price (UBC), [2 co-investigators removed to maintain confidentiality of study sites] Funded by: UBC School of Nursing About the Research Study: This study is the master’s thesis of Patrice Wright, a graduate student at the University of British Columbia. The purpose of this study is to understand the healthcare experiences of people who face frustrations and barriers when accessing care in the emergency department. We also want to understand what would make care more accessible and effective for them when accessing the emergency department. The study aims to create recommendations that improve the care for these people when visiting the Emergency Department. Invitation to Take Part in the Study: We would like to learn about the care experiences that make the emergency department a place where people feel welcome, safe and respected as well as the care experiences that may stop, delay or deter people from coming to the emergency department. This includes learning about how patients are welcomed, how staff build relationships with patients, how patients concerns are addressed, how conflict between patients and staff arises and is addressed, and how follow-up care is organized and communicated to patients. We plan to conduct observations of approximately 10 patients. We invite you to participate in this study by allowing us to observe the care you receive during your emergency department visit. To participate, you must meet the inclusion criteria that the research team has already discussed with you. What Participating Means: If you agree to take part, a researcher will be present during this emergency department visit. The researcher will be observing and taking notes during your emergency department visit. If you agree to take part, the researcher may make notes about your comments and interactions with emergency department staff. Your name or other identifying details will not be written down. We will not delay or interfere with your care in anyway. If you are in need of immediate medical attention, we will not observe your care until after you have received that attention. Taking part in this study is your choice. You may stop taking part at any time or request to have anything or 103 everything you say excluded from the researcher’s notes. Choosing to participate or stop taking part in the observations will not affect your care or your ability to get the care you need. Privacy and Confidentiality: Information collected is strictly confidential and will not affect your care in any way. Your name will not be written down, and no other information that identifies you (for example, where you work, or where you live) will be available to anyone except the research team. The following are the steps we will take to protect your identity and confidentiality: • Your name will not appear on any study documents. • The one document that does contain your name and the original notes taken during observations will be accessible only to the study investigators. • All documents will be identified only by code number and will be kept in a locked filing cabinet in a secure location. • All information will be stored securely in a locked cabinet or password-protected computer in a research office at the University of British Columbia. All research materials will be stored for at least 5 years after the work is published or presented. After that time, paper records may be securely destroyed. Even if you decide to stop participating in the study, the information you have provided will be kept and may be used in this study, unless you specifically request otherwise. Your name will never be used in any reports of this research. What you tell us will be used for final reports, articles in magazines and professional journals, and public talks. The results from this study may be used by researchers in future projects. Please let the researcher know if you would like a report of what we learn. Potential Risks and Benefits: There are no risks to your health from taking part in this study. Taking part in this study will help us better understand how to provide care that is more accessible and effective in the emergency department for people who face frustrations and barriers when accessing the emergency department. You personally may not receive any direct benefits from taking part in this study. Your participation is entirely voluntary, and your care will not be affected. Questions About this Study: If you have any questions about the study, please contact Patrice Wright, graduate student, at [phone number] or Dr. Colleen Varcoe, principal investigator and graduate student supervisor, at [phone number]. 104 If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the [Name of Research Ethics Board] at [Research Ethics Board’s Phone Number] or if long distance e-mail [Email of Research Ethics Board] or call the toll free [Research Ethics Board Phone number]. You may also contact the [Name of Research Ethics Board] at [Research Ethics Board’s Phone Number]. Consent Your participation in this study is completely voluntary. If you decide to participate in the study and then change your mind, you are free to withdraw at any time with no consequence. By expressing your consent verbally to the researcher, you agree to participate in the study described above. This form is for your information only. Please keep this in case you need to contact us with any questions later. End. 105 Appendix H Informed Verbal Consent Form – Observations – Staff Opportunities for Care: Providing Equitable Healthcare in the Emergency Department Informed Consent Form – Observations (Staff) Principal Investigator: Dr. Colleen Varcoe (UBC) Co-Investigators: Patrice Wright (UBC Graduate Student), Dr. Vicky Bungay, Dr. Bernie Pauly (UVic), Elder Roberta Price (UBC), [2 co-investigators removed to maintain confidentiality of study sites] Funded by: UBC School of Nursing About the Research Study: This study is the master’s thesis of Patrice Wright, a graduate student at the University of British Columbia. The purpose of this study is to understand the healthcare experiences of people who use drugs and who simultaneously experience homelessness accessing care in the emergency department. We also want to understand what would make care more accessible and effective for them when accessing the emergency department. The study aims to create recommendations that improves the care for people who use drugs and who simultaneously experience homelessness when visiting the Emergency Department. Invitation to Take Part in the Study: We would like to learn about the care experiences that make the emergency department a place where people feel welcome, safe and respected as well as the care experiences that may stop, delay or deter people from coming to the emergency department. This includes learning about how patients are welcomed, how staff build relationships with patients, how patients concerns are addressed, how conflict between patients and staff arises and is addressed, and how follow-up care is organized and communicated to patients. We plan to conduct observations of approximately 10 patients and approximately 20 to 30 staff. We invite you to participate in this study by allowing us to observe the interactions between yourself and patients who visit the emergency department. What Participating Means: A researcher will be present observing care interactions between patients and staff. The researcher will be observing and taking notes of these interactions from the beginning to the end of patients’ emergency room visit. If you agree to take part, the researcher may make notes about your comments and interactions with emergency department patients. Your name and other identifying details will not be written down. 106 We will not delay or interfere with the delivery of care in anyway. If patients are in need of immediate medical attention, we will not observe their care until after they have received that attention. Taking part in this study is your choice. You may stop taking part at any time or request to have anything or everything you say excluded from the researcher’s notes. Choosing to participate or stop taking part in the observations will not affect your employment status, performance appraisals, evaluations, or other conditions at this hospital. Privacy and Confidentiality: Information collected as part of this study is strictly confidential and will not affect your job in any way. Your name will not be associated with the information collected in this study. Only the study investigators will have access to the data. Even if you decide to stop participating in the study, the information you have provided will be kept and may be used in this study, unless you specifically request otherwise. Information that could identify you, other staff at the ED, patients, or anyone else present during observations will be removed from all notes and documents. Information collected during observations will be held in the strictest confidence. You will not be identified in any reports of this research. The information gathered will be used for final reports, articles in magazines and professional journals, and public talks. Potential Risks and Benefits: There are no risks to your health from taking part in this study. Taking part in this study will help us better understand how to provide care that is more accessible and effective in the emergency department for people who use drugs and who simultaneously experience homelessness. You personally may not receive any direct benefits from taking part in this study. Your participation is entirely voluntary, and your employment, performance evaluations and other work conditions will not be affected. The information will not be used to evaluate your work or work performance, or the performance of your colleagues. Questions About this Study: If you have any questions about the study, please contact Patrice Wright, graduate student, at [phone number] or Dr. Colleen Varcoe, principal investigator and graduate student supervisor, at [phone number]. If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the [Research Ethics Board Name] at [Research Ethics Board Phone number] or if long distance e-mail [Research Ethics Board Email] or call the toll free [Research Ethics Board Phone 107 Number]. You may also contact the [Research Ethics Board Name] at [Research Ethics Board Phone number]. Consent Your participation in this survey is completely voluntary. By participating in observations, you are consenting to participate in the study. If you decide to participate in the study and then change your mind, you are free to withdraw at any time with no consequence. End. 108 Appendix I Informed Verbal Consent Log Informed Verbal Consent Log Site: A B (circle) Patients Staff (circle) Subject ID Consent Version Date Consent Obtained 109 Appendix J Master List Master List Site: A B (circle) Participant first name Study ID 110 Appendix K Interview Guide Note: this interview guide will be used after the researcher (Patrice) has introduced herself, discussed the study and informed verbal consent is obtained. Opening: Thank you (participant’s name) for talking with me. As you may know, we want to learn how to make emergency room care better when people face difficulties with housing, income or employment and have lived or living experience with substance use. I would like to ask you some questions about the care you received during your emergency department visit today as well as in the past. The first few questions are about your decision to come to this emergency and the care you received while you were here. Question 1: Can you tell me about your most recent emergency visit? • Probes: What made you go? How did you get there? What was it like? Question 2: What about your care experience would make you want to return to this emergency department? Question 3: Was there anything about the care you received that would stop or make you think twice about going back to this emergency department? The next question is about something I observed when you received care in the emergency department. Question 4 (for participants who also participated in observation): During your visit I noticed _______(this will refer to an part of their visit that exemplified equity-oriented or inequitable healthcare). Did I recall that correctly? • Probe: How does that impact whether or not you seek care here? Question 4 (for participants who did not participate in observation): I have noticed ________ (this will refer to something I have observed in other people visits that exemplified equity-oriented or inequitable health care). I am wondering if you have had a similar experience? • Probe: How does this impact whether or not you seek care here? The next couple of questions are about what would make the emergency department a better place for you to come to. Question 5: What would you want to be different the next time you come here? Question 6: What would you want to be the same the next time you come here? 111 Is there anything I missed or that you want to share? I want to check-in to see how you are doing now that the interview is done. How did you feel answering those questions? 112 Appendix L Patient Demographic Survey Patient Survey: About You This study hopes to include people who identify from diverse backgrounds and understand the care experiences of people who face hardships. As such we would like to ask a few questions to get to know you a bit more. If you do not want to answer one or multiple questions, that is okay – just leave the questions blank. In what year were you born? What is your gender? How do you identify your culture or ethnicity? Do you identify as an Indigenous person? m Yes m No What best describes your current living situation? m Public, social, or supportive housing m Couching-surfing m Shelter m On the street m In vehicle (car or van) m Single-room occupancy hotel m Rooming House m Detox, treatment or other health care facility m Other (please specify): __________________ 113 What would you consider your primary work status? m Employed full-time (20+ hours/week) m Employed part-time (less than 20 hours per week) m Seasonal m Unemployed m Retired m Services (e.g., babysitting) in exchange for food, housing, etc. m You don’t have an option that suits me (please specify):__________________________ Do you receive any type of income assistance? Receiving Seeking Employment Insurance (EI) m m Social assistance m m Disability benefits m m Sick leave m m Workers’ comp m m Pension (includes any type/source of pension) m m Maternity/parental leave m m We want to know how hard it is for you to make ends meet right now. Very difficult Somewhat difficult Not very difficult Not at all difficult Not applicable Overall, how difficult is it for you to live on your total household income right now? m m m m m 114 Appendix M Informed Verbal Consent Form for Interviews – Patients Opportunities for Care: Providing Equitable Healthcare in the Emergency Department Informed Consent Form – Interviews Principal Investigator: Dr. Colleen Varcoe (UBC) Co-Investigators: Patrice Wright (UBC Graduate Student), Dr. Vicky Bungay (UBC), Dr. Bernie Pauly (UVic), Elder Roberta Price (UBC), [2 co-investigators removed to maintain confidentiality of study sites] Funded by: UBC School of Nursing About the Research Study: This study is the master’s thesis of Patrice Wright, a graduate student at the University of British Columbia. The purpose of this study is to understand the healthcare experiences of people who often face frustrations and barriers when accessing care in the emergency department. We also want to understand what would make care more accessible and effective for them when accessing the emergency department. The study aims to create recommendations that improves the care for these people when visiting the Emergency Department. Invitation to Take Part in the Study: We would like to learn about the care experiences that make the emergency department a place where people feel welcome, safe and respected as well as the care experiences that may stop, delay or deter people from coming to the emergency department. This includes learning about how you decided to come to the emergency and what influenced this; care during your visit that would make you want to come back; care during your visit that would stop, delay or deter you from coming back to this emergency; and your opinion about what you would want to keep the same and what you would want to change. We plan on interviewing approximately 10 to 15 patients. We invite you to participate in this study by taking part in an in-depth interview, to share your perspectives and experiences related to the care you received in the emergency department. To participate, you must meet the inclusion criteria that the research team has already discussed with you. What Participating Means: If you agree to take part, you will complete a short survey about yourself and an interview with a member of our research team. The short survey asks some general questions about you (for example, about your gender, culture/ethnicity, living situation etc.). The interview questions will be about the care you received during your emergency department visit. The interview will take place, if possible, at the end of your emergency department visit. You may also choose to complete the interview at a nearby location within 5 days of today’s emergency department visit. The interview will be audio-recorded and later typed up for our analysis. 115 The interview will take approximately 30 to 60 minutes to complete. We recognize that participating in the interview will take some time, and therefore you will receive $25 cash as a token of our appreciation. If you choose to complete the interview in-person within 1-5 days after leaving the Emergency Department, we will reimburse you for any costs related to your participation, such as parking, transportation and childcare. You may keep this money even if you stop participating in the study. We will not delay or interfere with your care in any way. If you are in need of immediate medical attention, we will not talk with you until after you have received that attention. Taking part in this study is your choice. You may stop taking part at any time or choose not to answer any of the researcher’s questions. Choosing to take part in an interview will not affect how quickly you are seen. It will not affect your care or your ability to get the care you need. Privacy and Confidentiality: Information collected is strictly confidential and will not affect your care in any way. Your name will not be written down, and no other information that identifies you (for example, where you work, or where you live) will be available to anyone except the research team. The following are the steps we will take to protect your identity and confidentiality: • Your name will not appear on any study documents. • The one document that does contain your name and the original audio recordings of the interviews will only be accessible to the study investigators. • All documents will be identified only by code number and will be kept in a locked filing cabinet in a secure location. • When we transcribe the audio recording to text we will remove any information that identifies you or anyone else mentioned in the interview. The text without this type of information is what we will use for data. • All information will be stored securely in a locked cabinet or password-protected computer in a research office at the University of British Columbia. All research materials will be stored for at least 5 years after the work is published or presented. After that time, digital and paper records may be securely destroyed. Even if you decide to stop participating in the study, the information you have provided will be kept and may be used in this study, unless you specifically request otherwise. Staff will not be able to see, read, or hear anything you say to a researcher in a way that will identify you. Your name will never be used in any reports of this research. What you tell us will be used for final reports, articles in magazines and professional journals, and public talks. The results from this study may be used by researchers in future projects. Please let the researcher know if you would like a report of what we learn. 116 Potential Risks and Benefits: There are no risks to your health from taking part in this study. Other risks are small. Talking about your health and the health care you receive may be upsetting. If you become upset, support will be provided. If you wish, we will give you information to help you get counselling or other support services. The survey will give you a chance to share your thoughts and experiences about your health and the care given to you at this Emergency Department. What you share with us may help health care providers, staff, and policy makers to improve the quality of care. You will not directly benefit from participation in this study. Questions about this Study: If you have any questions about the study, please contact Patrice Wright, graduate student, at [phone number] or Dr. Colleen Varcoe, principal investigator and graduate student supervisor, at [phone number]. If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the [Research Ethics Board Name] at [Research Ethics Board Phone Number] or if long distance e-mail [Research Ethics Board Email] or call the toll free [Research Ethics Board Phone Number]. You may also contact the [Research Ethics Board Name] at [Research Ethics Board Phone Number]. Consent Your participation in this study is completely voluntary. If you decide to participate in the study and then change your mind, you are free to withdraw at any time with no consequence. By expressing your consent verbally to the researcher, you agree to participate in the study described above. This form is for your information only. Please keep this in case you need to contact us with any questions later. End. 117 Appendix N Safety Protocol for Patients If a participant mentioned any active health concerns during the survey, remind them that you will not be sharing any of the information they have shared with you in the interview with anyone at the hospital. Encourage them to follow up with their health care provider(s) if they would like support, care, or advice. During or after the survey, it is possible that a participant may become visibly upset, spontaneously disclose feelings of distress or information about traumatic or violent experiences. IF A PARTICIPANT BECOMES DISTRESSED, PLEASE OFFER THE OPPORTUNITY TO TAKE A BREAK, SKIP QUESTIONS, OR END THE INTERVIEW. IF A PARTICIPANT DISCLOSES AN IMMEDIATE SAFETY RISK TO SELF OR OTHERS, PLEASE FOLLOW THE ESTABLISHED “Guidelines for Responding to Crisis or High Suicide Risk”. • Acknowledge that talking about topics covered in the interview (e.g., frustrations in accessing emergency department services) may produce emotional distress. o People sometimes have strong emotional reactions in the first few days after they have talked about things they have experienced. • Reinforce that this is a stress reaction that is completely normal. • Review the signs of stress reaction (see next page). • Review the things that may help them deal with the signs of a stress reaction should they occur (see next page). • Ensure that they have someone with whom they can talk about their experiences (family members, friends or professionals). If they have no one to turn to, offer information about professional support with their permission. Common Signs of a Stress Reaction Physical Emotional Cognitive Behavioural nausea fear confusion withdrawal vomiting guilt nightmares restlessness dizziness panic hypervigilance loss of appetite weakness anxiety poor concentration insomnia palpitations irritability forgetfulness increased appetite sweating grief disorientation increased sleep difficulty breathing anger intrusive images changes in activity chest pain loss of control feeling as if you are experiencing the same things again suspiciousness increased substance use (alcohol, tobacco, other drugs) What might help? Do things that make you feel good, such as: • Physical exercise alternated with rest • Be aware that numbing the pain with alcohol/drugs will complicate things • Relaxation exercises • Allowing yourself to feel rotten, and sharing your feelings with others • Listening to music • Keeping a journal • Eating well balanced, nourishing meals • Talking to people: talk is the most healing medicine • Keeping busy: structure your time • Reaching out to others and spending time with them Guidelines for Responding to Crisis 1. Tell the participant that you believe their safety or that of another person is at risk and that you are obligated to intervene. • Emphasize that you realize they are feeling desperate and wanting some relief. • Express your concern for their safety. • Tell them that other people need to be aware of their level of distress in order to provide the support and professional help needed. 2. Ask the participant if they have someone who could provide to support to them while they work through the crisis. Also explain that there are counselors and nurses who can provide immediate support, and provide contact information for the local helpline – 1-800-SUICIDE (1-800-784-2433). • Obtain permission to contact someone to provide additional support for the participant and for yourself; ask if there is someone else who they would feel comfortable speaking with. • Useful phrases: I’m really concerned about you and would like to get more support for you. I would like to get some support and advice for myself, so that I feel I’m supporting you appropriately. Is there someone (like a health care provider, counselor, or other supportive person) who you would feel comfortable talking with right now? Would you be willing to share what you’ve just told me with one of these people? 3. Stay with the participant until they are emotionally supported and/or connected in with counseling or other support services. 4. Document all actions on an Incident Report form and discuss with Dr. Varcoe. 120 Incident Report Participant Number Date Time Location of Incident Details of the Incident (observations; what was said or done) Witnesses Actions Taken (including contact/referral to service) Plan of Action (if needed) Name Signature Date & Time of Recording Team Member(s) Notified & Assisting
Thesis/Dissertation
eng
Public Health / Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
The intersection of stigma and inequity : the impact of structural violence on people with lived and living experience of substance use and homelessness in the emergency department
Text