Applied Science, Faculty of
Nursing, School of
DSpace
UBCV
Dyachuk, Dar'ya
Master of Science in Nursing - MSN
University of British Columbia
Many academic researchers want to partner with service providers who work for not-for-profit community-based organizations (CBOs) because they mitigate the gap between researchers and groups considered hard-to-reach. Although, literature exists on community-based participatory research (CBPR) practices, and the need to partner up with CBOs when doing research with marginalized communities, more research is needed on CBO staff’s perspectives and experiences of what ethical, valuable, and needed research is, for the communities they represent. The purpose of this thesis was twofold: (a) to examine the ethical experiences of CBO staff engaging with research; (b) to generate recommendations for ethical research practices with CBOs. Interpretive description (ID) was used during this secondary analysis, which drew upon 16 anonymized transcripts from in-depth interviews with CBO staff from a larger project examining ethical and methodological challenges within health research with people engaged in sex work (PESW). To help understand the complex dynamics of research ethics in practice as experienced by CBO staff, I drew on central tenets of relational ethics as described by Bergum (2013) for my theoretical underpinnings. Data was analyzed using a reflexive thematic analysis (TA) approach, as described by Braun & Clarke (2006; 2019), because it provided a rich and detailed description of the experiences of CBO service providers, while generating new knowledge. This analysis revealed three themes including: (a) CBOs and research relationships, (b) motivations for research engagement, and (c) recommendations for ethical research. Several implications for future research, including concluding recommendations are made at the end of this thesis.
ETHICAL ISSUES IN RESEARCH ENGAGEMENT WITH COMMUNITY SERVICE ORGANIZATIONS: A SECONDARY ANALYSIS by Dar’ya Dyachuk B.Sc.N., R.N. Queen’s University, 2018 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE AND POSDOCTORAL STUDIES THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) April 2023 © Dar’ya Dyachuk, 2023 ii The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the thesis entitled: Ethical Issues in Research Engagement with Community Service Organizations: A Secondary Analysis submitted by Dar’ya Dyachuk in partial fulfillment of the requirements the degree of Master of Science in Nursing Examining Committee: Dr. Victoria Bungay, Professor, School of Nursing, UBC Supervisor Dr. Adrian Guta, Associate Professor, School of Social Work, University of Windsor Supervisory Committee Member Dr. Lydia Wytenbroek, Assistant Professor, School of Nursing, UBC Supervisory Committee Member iii ABSTRACT Many academic researchers want to partner with service providers who work for not-for-profit community-based organizations (CBOs) because they mitigate the gap between researchers and groups considered hard-to-reach. Although, literature exists on community-based participatory research (CBPR) practices, and the need to partner up with CBOs when doing research with marginalized communities, more research is needed on CBO staff’s perspectives and experiences of what ethical, valuable, and needed research is, for the communities they represent. The purpose of this thesis was twofold: (a) to examine the ethical experiences of CBO staff engaging with research; (b) to generate recommendations for ethical research practices with CBOs. Interpretive description (ID) was used during this secondary analysis, which drew upon 16 anonymized transcripts from in-depth interviews with CBO staff from a larger project examining ethical and methodological challenges within health research with people engaged in sex work (PESW). To help understand the complex dynamics of research ethics in practice as experienced by CBO staff, I drew on central tenets of relational ethics as described by Bergum (2013) for my theoretical underpinnings. Data was analyzed using a reflexive thematic analysis (TA) approach, as described by Braun & Clarke (2006; 2019), because it provided a rich and detailed description of the experiences of CBO service providers, while generating new knowledge. This analysis revealed three themes including: (a) CBOs and research relationships, (b) motivations for research engagement, and (c) recommendations for ethical research. Several implications for future research, including concluding recommendations are made at the end of this thesis. iv LAY SUMMARY Although academic researchers want to partner with staff who work for community-based organizations (CBOs) to do research with communities experiencing marginalization, there is a lack of understanding of the experiences of CBO staff when it comes to partnering with researchers to do this work. This study aimed to better understand the experiences of CBO staff engaging with research and to generate recommendations for better research practices. Stories from 16 CBO staff members were included in this thesis. The participants revealed their experiences participating in research and working with researchers, their motivations for engaging in research, and their recommendations for improving research practices. Overall, academic researchers working with CBO staff need to improve their research practices to make research more ethical based on the perspectives of CBO staff. v PREFACE This thesis is a secondary analysis of a subsample of data taken from a larger study and includes original, unpublished work. The work depicted in this thesis, including the analysis, was completed by the author with support from the supervisors including Dr. Victoria Bungay, Dr. Adrian Guta, and Dr. Lydia Wytenbroek. This thesis was granted ethical approval by the University of British Columbia’s Behavioural Research Ethics Board (UBC BREB Number: H22-01208). vi TABLE OF CONTENTS Abstract ………………………………………………………………………………………... iii Lay Summary ………………………………………………………………………………….. iv Preface …………………………………………………………………………………………... v Table of Contents ……………………………………………………………………………… vi List of Abbreviations …………………………………………………………………………... x Acknowledgements ……………………………………………………………………………. xi Dedication ……………………………………………………………………………………... xii Chapter One: Situating the Issue ……………………………………………………………... 1 Introduction ……………………………………………………………………………… 1 Purpose …………………………………………………………………………………... 3 Significance ……………………………………………………………………………… 4 Research Questions ……………………………………………………………………… 5 Summary ………………………………………………………………………………… 5 Thesis Overview ………………………………………………………………………… 5 Chapter Two: Literature Review ……………………………………………………………... 7 Introduction ……………………………………………………………………………… 7 Literature Review Methods ……………………………………………………………… 7 Summary of the Studies …………………………………………………………………. 8 Community Engagement Definition …………………………………………………… 10 Community Engagement Research with CBOs ………………………………………... 11 Community-Based Participatory Research …………………………………….. 13 Benefits of CBO Research Engagement ……………………………………………….. 14 vii Challenges of CBO Research Engagement …………………………………………….. 15 Recommendations for CBO Engagement ……………………………………………… 17 The Need for More Research …………………………………………………………... 19 Chapter Three: Methods ……………………………………………………………………... 20 Introduction …………………………………………………………………………….. 20 Methodology …………………………………………………………………………… 20 Secondary Analysis …………………………………………………………….. 21 Theoretical Perspectives ……………………………………………………………….. 22 Relational Ethics Overview ……………………………………………………………. 23 Environment ……………………………………………………………………. 24 Embodied Knowledge ………………………………………………………….. 25 Mutual Respect ………………………………………………………………… 25 Engagement …………………………………………………………………….. 26 Summary of Relational Ethics …………………………………………………. 27 Data Collection ………………………………………………………………………… 27 Data …………………………………………………………………………………….. 28 Data Analysis …………………………………………………………………………... 28 Research Rigor …………………………………………………………………………. 30 Ethical Considerations …………………………………………………………………. 32 Chapter Summary ……………………………………………………………………… 33 Chapter Four: Findings ………………………………………………………………………. 34 Introduction …………………………………………………………………………….. 34 Introduction of the Three Themes ……………………………………………… 34 viii Summary of Participants ……………………………………………………………….. 34 Context for the Secondary Data ………………………………………………………... 35 Findings Overview ……………………………………………………………………... 35 Findings ………………………………………………………………………………... 36 CBOs and Research Relationships ……………………………………………………... 37 How Relationships Occur ……………………………………………………… 37 Examples of Positive Relationships ……………………………………………. 38 Examples of Disruptive Relationships …………………………………………. 41 Gatekeeping Against Research Harm ………………………………………….. 44 CBOs and Research Relationships Summary ………………………………….. 46 Motivations for Research Engagement ………………………………………………… 46 Recommendations for Ethical Research ……………………………………………….. 51 Recommendations to Improve Research Practices …………………………….. 51 Recommendations to Improve Community Engagement ……………………… 54 Findings Summary ……………………………………………………………………... 57 Chapter Five: Discussion and Recommendations …………………………………………... 58 Introduction …………………………………………………………………………….. 58 Summary of Key Findings ……………………………………………………………... 58 Discussion ……………………………………………………………………………… 60 Recommendations ……………………………………………………………………… 63 Study Implications ……………………………………………………………………... 66 Limitations ……………………………………………………………………………... 67 Conclusion ……………………………………………………………………………... 68 ix References ……………………………………………………………………………………... 71 x LIST OF ABBREVIATIONS CBPR: Community-based participatory research CBO: Community-based organizations CEnR: Community-engaged research CEQ: Critical ethical inquiry CIHR: Canadian Institutes of Health Research ID: Interpretive description PAR: Participatory action research PESW: People engaged in sex work TA: Thematic analysis xi ACKNOWLEDGEMENTS First, I would like to thank all the participants who took part in the original Ethics Project. Without their insights and storytelling, this study would not have happened. This work would also not have been possible without the patient, consistent, and gentle support of Dr. Victoria Bungay, my supervisor and mentor throughout this whole academic journey. Thank you for being both persistent and kind with me as I navigated the challenges of engaging with this material while battling my own mental health that got in the way, as it so often does. I will forever be grateful for the balance you have shown me in supporting and challenging me to ensure that the stories of participants were given the justice that they deserved. An incredible thank you to Dr. Adrian Guta, for your expertise and assistance. Thank you for pushing me to think deeper, and for encouraging me to make my voice more present in this work. I am also forever grateful to Dr. Lydia Wytenbroek, for your incredible attention to detail when reviewing my work, and for your unique perspectives which helped elevate my writing. I am incredibly appreciative of all the time each member took to reading, examining, and providing valuable feedback to my work. I know this thesis would not have been the same without it. I also cannot even begin to describe how the support of my partner, Scott, has made this entire project possible. Thank you for loving me at my very worst, I could not have achieved this without you. For my family, my parents Lana and Alex, and my grandma Irina, thank you for checking up on me, and reminding me every day why I am doing this. I thank you for all the sacrifices that you have made. I am so incredibly proud to be your daughter and granddaughter. It was because of your love, encouragement, and support that this achievement was possible. xii DEDICATION I dedicate this to my mom and dad, thank you for always letting me chase my dreams. я вас очень люблю! 1 CHAPTER ONE: SITUATING THE ISSUE Introduction Community-based organizations (CBOs) are not-for-profit bodies that represent and work on community needs. CBOs may partner with a specific community, for example, people engaged in sex work (PESW). They may also focus on addressing a specific cause, like affordable housing. Often, CBOs provide services and support to people who experience marginalization or people who are considered hard-to-reach (Barton-Villagrana et a., 2002; Blas et al., 2008; Carey & Braunack-Mayer, 2009). CBOs may provide health services, social programming, and may be involved in the production of research to inform the development of policy, programs, and services (Sanders et al., 2004). The inclusion of CBOs, their service providers, and consequently the populations they serve, in research studies may increase the chances that government or other decision makers will develop and implement realistic and practical policies that can better meet the needs of communities (Blas et al., 2008; Sanders et al., 2004). Therefore, many academic researchers want to partner with CBO service providers as they may be able to help bridge the gap between researchers and groups considered hard to reach. This thesis explored CBO staff’s perspectives regarding research experience and demonstrated that more research is needed on CBO service providers’ viewpoints and understandings of what ethical, valuable, and needed research is, for the communities they represent. Firstly, it was important to define what the terms hard-to-reach and marginalization mean. The definition for hard-to-reach varies but it does have common features (Bungay et al., 2016). In this thesis, communities that are hard to reach are defined as those that may be difficult to involve in research, healthcare, and other social services because of stereotypes and prejudiced 2 social policies and practices (Bungay et al., 2016). Populations experiencing marginalization refers to groups that experience discrimination and exclusion because of unequal power dynamics across a diverse number of contexts, including the economic, political, social, and cultural environments (Montesanti et al., 2017; Sevelius et al., 2020). Some examples of groups that experience marginalization are communities that are heavily researched, including those who are affected by mental health and addiction, individuals who are precariously housed, persons living in poverty, people affected by HIV/AIDS, and PESW (Sevelius et al., 2020). It is also important to note that communities that experience marginalization are also often the ones who are hard to reach, and so at times in this thesis, these two communities may be talked about in relation to each other, or they may also be discussed interchangeably. The inclusion of the perspectives of CBOs and their staff in research studies is essential to ensuring that the voices of those who work with communities experiencing marginalization are heard and that their concerns are a priority in developing research project objectives (Pratt, 2019). The researcher has the added responsibility of prioritizing the inclusion of CBO staff’s voices in equity-orientated health research, to address injustice and create research questions that focus on making health services more affordable, accessible, equitable, and appropriate for the populations that experience some of society’s biggest health challenges (Pratt, 2019). Unfortunately, when research is undertaken with members from communities experiencing marginalization, such as PESW, these individuals may experience a re-surfacing of traumatic experiences, negative emotions, and distress (Bungay et al., 2022; Goldenberg et al., 2015). As a result of academic curiosity and intrusive interview questions, that may not align with research objectives, unintended harm may be caused, leaving participants feeling violated and hopeless (Voith et al., 2020). It is key to note that unfortunately research harm may still 3 occur if researchers do have good intentions when undertaking a research project and if the interview questions do align with the research objectives, however harm is usually lessened when these ethical research practices and procedures are in place. Due to emotional distress, stigma, discrimination, and fear, communities may not want to participate in research which can lead to further inequities and lack of knowledge about appropriate service delivery for these populations (Goldenberg et al., 2015; Reed et al., 2017). Thus, involving individuals from communities who are experiencing marginalization in research studies may expose these individuals to a substantial degree of harm without contributing to better service delivery. This is where the inclusion of CBO service providers may be ideal in moderating some of these experiences faced by research participants, as will be described throughout the remainder of this study. One approach to conducting research projects in a way that can ease the harm to members of communities who are experiencing marginalization, while also helping to overcome the power dichotomy between academic researchers and community members, is to include CBO staff in research studies. This approach may be the most ethical, viable and sustainable action to engage groups affected by marginalization in research (Wilson et al., 2012). To effectively accomplish this goal, the academic community can benefit from the exploration of ethical engagement and ethical research from the experiences and perspectives of the CBO staff. Purpose There is a lot of literature that emphasized the need to engage communities experiencing marginalization in research to facilitate change for those communities. Many researchers also report that CBOs are in a place to support academic researchers and groups considered hard-to-reach (Wang et al., 2017). However, more research is needed on CBO staff’s perspectives and 4 experiences of what ethical, valuable, and needed research is, for the communities they represent. There is a key distinction that needs to occur for the purpose of this research project. It is vital to highlight that this thesis will be focusing on the CBO-research engagement, through the perspectives of staff who work for CBOs that support PESW. By using data from interviews of people who work at CBOs that support individuals engaged in sex work, the purpose of this thesis was two-fold. Firstly, the purpose of this study was to examine the ethical experiences of CBO staff engaging with research. Secondly, the purpose was to generate recommendations for ethical research practices with CBOs. Significance As mentioned previously, there is a substantial body of literature that explores the need to engage communities experiencing marginalization in research; however, there is a gap in CBO staff's perspectives regarding their experiences and engagement in academic research. A rich and detailed understanding of what CBO staff expect from academic researchers in relation to conducting ethical research with marginalized groups can inform higher quality research design and stronger partnerships between researchers and marginalized groups (Goldenberg et al., 2015; Montesanti et al., 2017). Improving the overall health, wellbeing, and quality of life for populations experiencing marginalization is the goal which can be achieved when researchers reduce the power dichotomy and facilitate the creation of practical solutions and influential policy change for services that community members access through community organizations (Wilson et al., 2012). By using a trauma-informed and strengths-based research framework, academic researchers may be able to focus on community-identified needs and treat CBO staff as knowledge experts (Voith et al., 2020). As a result of this approach, academic researchers may 5 be able to help reduce the stigma and help eliminate the deficit lens that is often used when describing these communities (Voith et al., 2020). Research Questions The research questions that will be guiding this secondary analysis are: 1) How do CBO staff who engage with research identify what constitutes ethical research experiences? 2) What are CBO staff’s recommendations about how researchers can conduct ethical research in a way that will enhance the research engagement of CBO staff? Summary CBO staff support marginalized communities by providing access to services and resources and by advocating for CBO staff engagement in research opportunities that can facilitate meaningful action and change for the clients that they serve. Marginalized populations are highly researched, with many academic researchers conducting projects that ask intrusive, triggering questions further perpetuating stigma, discrimination, and fear. This process leads to decreased research engagement by marginalized groups (Bungay et al., 2022). The goal of this study was to interpret the experiences of CBO service providers who have familiarity with participating in research and working with researchers. Additionally, the goal with this thesis was to provide recommendations for how to ethically engage with communities, such as PESW, with the purpose of enacting policy change and improving health, wellbeing, and overall quality of life for the affected communities. Thesis Overview This chapter provided a brief background on CBOs, CBO staff engagement with research, and the purpose and significance of this project, which focuses on the importance of 6 examining the research experiences of CBO staff who work with communities experiencing marginalization and their relationships with academic researchers. Chapter Two addresses the literature review of the current state of the knowledge on community engagement, and academic partnerships with CBOs and their staff. Chapter Three discusses the methods of secondary analysis, highlighting the theoretical framework and methodology that guided this study. Chapter Four describes the findings of the study, unfolding the themes of a) CBO staff research relationships, b) CBO staff motivation for research engagement, and c) recommendations for ethical research in relation to CBO staff’s experiences. Finally, Chapter Five discusses the findings and final recommendations from CBO staff on how to ethically engage CBO staff in research. 7 CHAPTER TWO: LITERATURE REVIEW Introduction In this chapter I explored current literature about meaningful engagement between CBOs and academic researchers to identify the state of knowledge about how meaningful engagement is understood. I specifically explored primary, original research articles published in academic journals to identify definitions and relational elements of engagement. I concluded with a summary of the state of current knowledge and the gap my project sought to address. Literature Review Methods When I searched the literature to identify the current state of knowledge about definitions and elements of CBO and community engagement, I was not able to find a concreate definition that was consistently used by researchers. As a result of this inconsistency, I conducted a comprehensive literature search in two databases, including Cumulative Index to Nursing and Allied Health Literature (CINAHL), and MEDLINE, to examine the definition and elements of CBO engagement. I used two elements in this literature search including community-based organization and engagement. The literature search included both ways of spelling the first concept, ‘organization’ and ‘organisation’. The search terms were combined using the Boolean operator “OR” for within concepts, and with the Boolean operator “AND” for across concepts. Primary research articles published between 2015 and 2022, and studies published in English were included. I decided to only include articles published in the last seven years so that the information guiding this thesis was current and up to date. The American Psychological Association (2020), recommends “citing reliable, primary sources with the most current information whenever possible.” Therefore, following this recommendation I wanted to see if I 8 could find the most recent articles available to understand the current views and research on CBO engagement. Selected articles were imported into Covidence, an organizational system for better review management. I first reviewed the title and abstracts of each article in the first step of the review. During the full-text review, I made sure that the references met my inclusion criteria of a) studies that defined or discussed engagement in CBOs or mentioned definitions of community engagement and/or community-based research practices b) studies that discussed factors leading to CBO engagement c) recommendations for CBO engagement and d) activities that illustrated CBO engagement. Studies were excluded for several reasons. Studies were excluded if the population of interest were children or youth because the primary data that was analyzed in this thesis did not involve any CBO staff that worked with children or youth. Therefore, it would be beyond the scope of this thesis to explore any differences between CBO service providers experiences who work with adults versus who work with children and/or youth. Studies were also excluded if the authors only mentioned a collaboration between a healthcare system and CBO and if the study only mentioned patient-care outcomes. Overall, to guide this thesis I selected studies that looked at community engagement or claimed to use community engagement in its methodology. I also looked at studies that described working in partnership with CBOs and their staff members. Summary of the Studies A total of seventeen studies were reviewed in detail to understand the existing literature about CBOs and community engagement. As mentioned previously the studies were published between 2015 and 2022. Most of studies were conducted in the United States (n= 9) and Canada (n= 5), while one study was conducted in Australia, one in India, and one in Sweden. All the 9 studies were qualitative (n= 17). Out of the seventeen studies, three studies specified that they utilized a case study approach in their methods. Furthermore, ten studies mentioned that they used a community-based research approach including: community-engaged research (CEnR) (n= 5), community-based participatory research (CBPR) (n= 3), community-based research (n= 1), and community-based participatory action approach (n= 1). The participants in these studies were varied. Some studies exclusively examined CBO staff members (n= 6) working for different types of CBOs, while other studies focused solely on researchers (n= 4). There were also studies that focused on both the CBO staff and researchers (n= 4). The other participants included: a diverse inner-city community with no prior knowledge of research (n= 1), older adults in Native American rural and homeless communities (n= 1), and black men and women living with HIV (n= 1). There were many different topics that were the primary focus of the studies included in this literature review. The most common topic was exploring how to understand and strengthen community-academic partnerships (n= 6), closely followed by examining research ethics when working with CBOs and developing guidelines (n= 4). The studies also focused on designing, implementing, and evaluating a training program for researchers working with marginalized communities (n= 2), as well as studies focusing on community dissemination and knowledge translation with community members (n= 2). Finally, there were three more studies that dealt with how CBOs decide to engage with research (n=1), how CBOs understand engagement (n= 1), and one study which dealt with understanding power, privilege, and the researcher identity (n= 1). After reading the current literature, five main themes were chosen to be discussed in this literature review including a) community engagement definition b) community engagement with 10 CBOs c) benefits of CBO engagement d) challenges of CBO engagement and e) recommendations for research engagement with CBOs. Community Engagement Definition Nine studies provided varied definitions of community engagement within the research context (Battaglia et al., 2019; Fielding-Miller et al., 2022; Neufeld, 2019; Pratt, 2020; Pratt et al., 2020; Saleh et al., 2022; Scruby et al., 2017; Turin et al., 2022; Youn et al., 2019). There was no consensus about the exact definition for community engagement, however there were similarities and differences between how the studies included in this literature review chose to describe this concept. Several studies summarized community engagement as working together collaboratively with groups of people, or organizations to address the well-being of those people (Battaglia et al., 2019; Fielding-Miller et al., 2022; Neufeld, 2019). Other studies expanded that definition and went on to state that community engagement encourages community-academic partnerships, where the community is an equal partner to academic researchers (Battaglia et al., 2019; Fielding-Miller et al., 2022; Saleh et al., 2022; Turin et al., 2022). Another study by Scruby et al. (2017), added that community engagement aims to repair inequities by showing respect for the community by highlighting their value and acting on their actual needs. Several studies spoke directly about the ways in which community engagement increases the relevance of research in more underserved populations in research by increasing the participation of those communities (Pratt, 2020; Saleh et al., 2022). Alternatively, instead of talking specifically about community engagement, some studies defined community-based research methods. One specific example was a study by Scruby et al. (2017), that defined community-based participatory action research (PAR). PAR was defined as a subset of community-based research that tries to include the views of community 11 representatives in each step of the research process, with the goal being that the engagement with the community will facilitate knowledge translation and put the research findings into practice with the affected communities (Scruby et al., 2017). As mentioned previously three studies chose to define community-based participatory research (CBPR), highlighting that this framework emphasizes equity in partnerships between communities, organizations representing those communities, and researchers in all aspects of the research process, with the goal of focusing on strengths and the sharing of responsibilities (Coffey et al., 2017; Saleh et al., 2022; Youn et al., 2019). Another study mentioned that “community engagement is ethically and scientifically essential for all health research” (Pratt et al., 2020). All these definitions have several things in common. They all speak to the collaborative partnership between different groups that is grounded in respect and valuing the voices of the community that is being researched. The goal of community engagement and community-based research practices is to carry out research that will address the needs of the target community and increase the well-being within those groups. Community Engagement Research with CBOs Once the definition of community engagement was explored, I wanted to understand what community engagement research with CBOs looks like, and if there is a consensus in the literature on how this practice is understood and implemented. Overall, ten studies spoke to this idea (Battaglia et al., 2019; Fielding-Miller et al., 2022; McDavitt et al., 2016; Pratt, 2020; Pratt et al., 2020; Saleh et al., 2022; Scruby et al., 2017; Turin et al., 2022; Yeh et al., 2022; Wang et al., 2017). It appeared that one of the main assumptions of community-engaged research underpinning research in this field is that CBOs, and the staff who work in them, have a credible 12 and legitimate understanding of the experiences, values, and concerns of the communities they serve (Pratt et al., 2020; Saleh et al., 2022; Scruby et al., 2017). CBOs are seen as trustworthy places by community members, where individuals share their experiences and develop relationships (Yeh et al., 2022). As previously mentioned, community engagement may be described in terms of relationships between researchers and community representatives. The literature highlighted that often these relationships take place along a continuum and are not necessarily static, meaning that they can change and mold over time (Wang et al., 2017). Some examples of activities that fall at the low engagement end of this continuum or spectrum include participant recruitment; activities such as approaching potential participants on the street or posting flyers by community members and/or CBO service providers (Fielding-Miller et al., 2022; Pratt, 2020; Saleh et al., 2022). Participant recruitment may also be more collaborative, for example, a researcher can work with CBO staff to develop the recruitment materials based on their expert opinions and experiences (Fielding-Miller et al., 2022; Pratt, 2020; Saleh et al., 2022). If you move farther along the relationship continuum, the literature illustrated that more engaged research studies implement focus groups or community advisory committees at the beginning of the study to identify the community’s key issues (Wang et al., 2017). These same groups should be once again consulted at the end of the study to report back the analysis and findings of the research (McDavitt et al., 2016). Further, the literature reveals that currently CBO engagement is also considered to be occurring when CBO staff are asked to implement a study design, like providing training following a research protocol or integrating a research intervention into their own programs and services at the organization (McDavitt et al., 2016). 13 Five studies in this literature search also revealed that the greatest level of community engagement is achieved when the researcher and CBO enter a partnership (Battaglia et al., 2019; Fielding-Miller et al., 2022; Saleh et al., 2022; Turin et al., 2022; Yeh et al., 2022). This partnership is used to identify, explore, and address problems of interest to both the CBO and the researcher and to collaboratively develop and implement the research questions, methods, and decision-making plan (Fielding-Miller et al., 2017; Pratt, 2020; Saleh et al., 2022). This partnership supports the belief and understanding that the CBO, and the staff at the CBO, are experts in working effectively with a population and that this skill and knowledge is as valuable as the researcher’s academic expertise. Community-Based Participatory Research Out of the seventeen studies, three studies specifically described CBPR (Coffey et al., 2017; Saleh et al., 2022; Youn et al., 2019). This collaborative research approach establishes structures and procedures for communities, often through CBOs, to participate in the research process fully and to improve the overall well-being of the people who access CBO spaces (Coffey et al., 2017; Saleh et al., 2022; Youn et al., 2019). Current findings from the studies reviewed, highlight that the CBPR approach requires co-learning, shared decision-making, full participation in the research process, and reciprocal ownership of any intervention or product of the project (Coffey et al., 2017; Saleh et al., 2022; Youn et al., 2019). The literature agreed that a key aspect of CBPR is that the more inclusion and community partnerships that are integrated into the project, the more applicable the research findings will be (Coffey et al., 2017; Saleh et al., 2022; Youn et al., 2019). It was also found that the best time to implement that inclusion is as early as possible in the research process (Fielding-Miller et al., 2022; Pratt et al., 2020; Youn et al., 2019). 14 Moving beyond the explicitly stated CBPR approach used by the three studies in this literature review, some studies also described some key components of a strong partnership between staff at CBOs and academic researchers including understanding, respect, and trust (Coffey et al., 2017; Neufeld et al., 2019; Pratt et al., 2020; Turin et al., 2022; Yeh et al., 2022; Youn et al., 2019). Other important factors to strengthen the CBO-researcher relationship include mutually agreed-upon project goals, and a continuous collaborative working structure which begins from the generation of goals to the dissemination of the results (Scruby et al., 2017). Benefits of CBO Research Engagement There were consistent findings across ten of the studies concerning the benefits of CBO engagement in research (Fielding-Miller et al., 2022; McDavitt et al., 2016; Neufeld et al., 2019; Nyström et al., 2018; Pratt 2020; Pratt et al., 2020; Scruby et al., 2017; Turin et al., 2022; Yeh et al., 2022; Youn et al., 2019). First, the literature indicated that the results of the research may be more appropriate to community members and their everyday realities if meaningful engagement with CBOs is achieved (Fielding-Miller et al., 2022; Neufeld et al., 2019). Research suggests this positive result may occur because a true partnership may help advance academic research into practice more rapidly and advance the health of communities being studied in more pronounced ways (Neufeld et al., 2019; Youn et al., 2019). Therefore, partnerships between CBOs and researchers are key for knowledge translation, and the integration of community knowledge, needs, and preferences into research (Scruby et al., 2017). Additionally, meaningful collaboration between CBO staff and researchers can lead to varied and important outcomes for the community members where the research occurs as well as population health more broadly. Some of these outcomes include the most up-to-date intervention and prevention efforts for community members, the development of greater health 15 promotion systems and educational opportunities, identification of public health priorities, and the knowledge translation of clinical questions that address community needs (Pratt et al., 2020). Other benefits reported in these studies pertained to the research process. For example. in research in which a CBO is a collaborator for a funded study, CBO’s may gain access to financial and other resources to start sustaining or improve existing programs or initiate new programs (McDavitt et al., 2016). Through research and collaboration, organizations may further respond to the needs of the community and enhance their role as a critical resource for community members. By participating in research projects as collaborators, CBO staff may learn about the effectiveness of their existing programs and services, further improving the organization’s ability to deliver and implement initiatives in the present and future (McDavitt et al., 2016). Increased advocacy was an additional benefit of CBO engagement in research (Neufeld et al., 2019; Yeh et al., 2022; Youn et al., 2019). By partnering with an academic institution, staff at CBOs may increase their advocacy strength by having a more visible platform to share the community voice and impact policy change (Fielding-Miller et al., 2022; Pratt 2020; Pratt et al., 2020; Turin et al., 2022; Yeh et al., 2022; Youn et al., 2019). Lastly, for community organizations to secure additional funding for their programs and services it may be critical to demonstrate understanding of the research process and the skills gained by the organization and its staff, through participating in a research partnership (Nyström et al., 2018). As a result, the CBO staff-research engagement may be beneficial because it may secure more funding for their organizations if CBO staff partner with academic researchers to drive knowledge generation and the acquisition of new research skills for the CBO service providers. Challenges of CBO Research Engagement 16 Ten studies highlighted some of the most common challenges with CBO research engagement (Coffey et al., 2017; Fielding-Miller et al., 2022; Jull et al., 2017; McDavitt et al., 2016; Muhammad et al., 2015; Pratt, 2020; Pratt et al., 2020; Switzer et al., 2019; Turin et al., 2022; Wang et al., 2017). A prevalent challenge reported for CBO staff engagement in research with academic researchers is the time required to establish, support, and advance partnerships that are required to be built on trust (McDavitt et al., 2016; Wang et al., 2017). The literature demonstrated that CBO staff are incredibly busy, therefore it may be challenging for staff to free up time for additional activities beyond the scope of their daily work (McDavitt et al., 2016). Other findings note that there may be competing priorities between what the research staff believe to be important and what the CBO staff deem as a priority (Pratt 2020; Turin et al., 2022). These differing opinions may make the relationship feel strained, with each party feeling like they are compromising and not staying true to their goals and vision (Pratt 2020; Turin et al., 2022). Another challenge reported was the hierarchies and negative power dynamics in academic and CBO settings (Coffey et al., 2017; Fielding-Miller et al., 2022; Pratt, 2020; Pratt et al., 2020; Switzer et al., 2019). The research studies demonstrated that CBO staff represented a varied and dynamic group. For example, some staff had advanced degrees and worked as staff members for many years (Switzer et al., 2019). Other staff members shared similar life experiences with the members served and had received or were currently receiving services from the agency at the time these studies were conducted (Switzer et al., 2019). Staff with lived experience were valued because of their indispensable knowledge of community dynamics and experience with the issues being addressed by the research (Pratt, 2020; Pratt et al., 2020; Switzer et al., 2019). For researchers the story may be very similar. The findings of the research 17 studies reported that academic researchers may have deep connections with the communities they do research with, while others have fewer connections but express more of a curiosity about a particular topic or area of concern (Coffey et al., 2017). In either case, the literature highlights that it is vital to be able to assess and distinguish the strengths and limitations of the people who will be participating in the research process and working with community members (Muhammad et al., 2015). The findings from the literature review also showcased that it may be challenging getting the intended outcomes from research if the researcher does not have the required skills, or if they do not believe in the value of a meaningful research process (Jull et al., 2017). As a result of this ineffectiveness, one study suggested that the data’s quality and the findings of the research may suffer (Jull et al., 2017). The literature also suggested that both researchers and CBO staff have their own expectations when it comes to the outcomes of the research and their respective agendas (Jull et al., 2017; Muhammad et al., 2015). Researchers may have challenges in navigating their own research agendas and the needs identified by the whole research team, including CBO staff (Jull et al., 2017; Muhammad et al., 2015). Therefore, the goal of more inclusive and comprehensive research studies requires more time and resources than the more traditional style studies. Recommendations for CBO Engagement Even though ten studies mentioned that they used a community-based research approach (Battaglia et al., 2019; Coffey et al., 2017; McDavitt et al., 2016; Muhammad et al., 2015; Neufeld et al., 2019; Scruby et al., 2017; Switzer et al., 2019; Turin et al., 2022; Youn et al., 2019; Wang et al., 2017), the literature did not seem to provide too many concrete recommendations on ways to improve partnerships between CBO staff specifically and academic 18 researchers in making them more meaningful and ethical. Several authors agreed that to address some of the most common challenges between CBO staff and researchers, as mentioned in the previous section, regular communication and collaboration, that starts at the beginning of the CBO-researcher relationship, is key to build the foundation of trust that will be used to build the remainder of that relationship (Coffey et al., 2017; Fielding-Miller et al., 2022; Pratt et al., 2020; Turin et al., 2022). The literature described a good academic research partner as one who understands the value of the CBO staff and intentionally works on learning about implementation from them (McDavitt et al., 2016). In the discussion sections of some of the studies guiding this literature review, there was also a lot of emphasis on member training to prevent a lack of quality in the data and research findings (Battaglia et al., 2019; Pratt et al., 2020). The studies reported that it is vital for all members of the research team to understand their role and their value, and they should be encouraged to freely ask for help or provide necessary feedback about what is working in the research process and what can be improved (Battaglia et al., 2019; Pratt et al., 2020). The literature also recommended that when a relationship between a CBO, their staff, and a researcher is being considered, there needs to be a process to assess the needs and capacity of each at the beginning of the engagement and at regular intervals after the partnership is started (Scruby et al., 2017). There also needs to be a consistent, interactive, and explicit plan to monitor and discuss the research process whenever it is needed to avoid misunderstandings and distrust (Jull et al., 2017). A consistent recommendation within this body of literature was that logistically the researcher and the CBO staff need to be clear about their availability, plans, and expectations for 19 continued engagement, working relationships, and current and future projects, so that each member of the team is on the same page (Muhammad et al., 2015). The Need for More Research Although there was current literature available on several aspects of community engagement and community-based research practices, more research is needed directly from the perspectives of the CBO staff who work for non-profit organizations. This practice was especially true when referring to CBO staff who work in supporting heavily researched communities, including PESW. This literature review was not sex work specific because there was a lack of empirical studies about CBO engagement specific to sex worker populations in research. As well, although there were six studies which examined CBO staff perspectives, more research is needed to further articulate and explore their experiences. CBOs’ service providers experiences and perspectives are required to advance knowledge and understanding from academic researchers and to further support or dispute some of these claims and/or recommendations found in the current literature. 20 CHAPTER THREE: METHODS Introduction In this chapter, I describe the research and theoretical perspectives, methods, and ethical considerations that informed my thesis. I begin with an overview of qualitative interpretive description as the methodology. I then detail the theoretical perspectives concerning relational ethics that informed my work. Next, I explain the data collection and analytic approach that I used, including the application of perspectives concerning relational ethics. I conclude with the ethical considerations for this project. Methodology For this project, Interpretive Description (ID) was used as the methodological direction to inform this study. ID was chosen because it is an inductive analytical approach that generates an understanding of applied phenomena (Thorne, 2016, p. 180). It also yields implications, and in relation to this thesis, recommendations that can be applied to real-world environments. ID allows the analysis to flow in a logical manner and creates data engagement that goes beyond description to generate new knowledge and apply it in practice (Thorne, 2016, p. 40). With ID the researcher can “shed light” on the circumstances that influence the interpretation of experiences in applied research contexts. Understanding what makes description interpretive is vital to accomplish this task. For this study it was key to explore associations and patterns within the described experiences to provide meaningful recommendations to improve academic and community research relationships (Thorne, 2016, p. 56). The aim of using ID in this analysis was to allow me to look beyond the obvious description, and instead focus on the thematic insights gathered from the 21 data to grasp how CBO service providers might have thought about the phenomenon (Thorne, 2016, p. 57). My objective was to examine the CBO service providers’ experiences, thoughts and feelings concerning academic researchers’ engagement with ethical research practices with marginalized communities. An ID approach allowed the perceptions of CBO staff to be examined and better understood. The data and the experiences which CBO service providers shared, allowed me to move beyond a qualitative description of their experiences and engage in actual interpretation of the experiences from CBO staff’s perspectives. These interpretations allowed me to build new knowledge and form opportunities for further research on this topic. Using ID methodology guided me to explain how the participating CBO staff engaged with academic researchers and research projects and discuss their recommendations for future research practices. Secondary Analysis In a secondary data analysis, data collected by one researcher is re-analyzed by another researcher to either answer a new research question or confirm the primary study’s original findings (Polit & Beck, 2017). This thesis addressed new research questions not explored in the primary study. Glaser (1963) wrote that secondary analysis is “the study of specific problems through analysis of existing data which were originally collected for other purposes” (p. 11). Since then, this approach has been developed and adapted for qualitative data, without the limitations of rigid instructions that qualitative researchers need to follow (Beck, 2019, p. 9). This analysis allows researchers to explore and re-use primary data which may increase efficiency in knowledge production and allow additional research questions to be answered (Beck, 2019, p. 1). Thorne (1994) argues for the potential success of this method for time- 22 intensive qualitative research studies (as cited in Beck, 2018, p. 6). This recycling of data may be cost-effective, providing a maximum benefit of publicly funded research for affected communities (Beck, 2019, p. 11). This approach may also be appropriate when conducting research with marginalized communities as this design may be able to safeguard participants from being asked the same intrusive questions multiple times, as well as facilitate more research with groups that may be difficult to recruit (Beck, 2019, p. 11). This thesis served to add new knowledge to community engagement research literature without having to recruit participants and collect data, instead focusing on data analysis of already-gathered rich data. Therefore, due to the efficient, cost-effective, and safe-guarding nature of the qualitative secondary analysis, it was an appropriate design to guide this thesis. Theoretical Perspective To help understand the complex dynamics of research ethics in practice as experienced by CBO staff facilitating and participating in health research and to generate recommendations that can be used in practice, I drew on central tenets of relational ethics as described by Bergum (2013). There are varied positions on relational ethics, but for the purpose of this study I drew on specific perspectives of relational ethics that consider the way that research practices occur within the context of relationships between people, their histories, experiences, and the setting. Relational ethics requires us to consider how people think about what is true for themselves and what is true for others (Bergum, 2013, p. 127). Conversations, and for the purpose of this study, interview transcripts, followed the principle that participants should not only have the ability and opportunity to share their experience but also that their experiences are their reality, and this reality should be considered as expert knowledge. This knowledge may 23 help researchers understand phenomena better than it currently is (Gadamer, 1996, p. 82, as cited in Bergum, 2013, p. 128). It is also important to speak about the relevance of relational ethics to a study about the experiences of CBO staff’s participation in research and the relevance of research ethics. In the context of this thesis, and when speaking about CBO research engagement, relational ethics speaks to the importance of the researcher being vulnerable and transparent about the motives and goals of a research project with the CBO and their staff (Bergum, 2013, p. 140). Through relational ethics, we can understand that everyone in the community has their own unique perspectives and priorities. The community may not agree with the priorities of the researcher or view the research urgencies as important. Relational Ethics Overview There are four main themes that make up relational ethics, and these themes guided my interpretative analysis. The four themes are environment, embodiment, mutual respect, and engagement (Bergum, 2013, p. 129). Relation ethics, as a theoretical perspective, posits that ethical action involves a relationship between two or more people or two or more groups. This approach involves commitment, agency, and responsibility for the self and others. Within this relationship, the researcher for example, is an embodied self who is both independent but also connected to others in said relationship. Relational ethics requires that people within the relationship recognize the identity and the humanness of other individuals in the relationship, as they exist in their totality, and not limited to the specific interaction that is occurring. Relational ethics supports that people have complex personal, social, and political histories that are part of the identity they bring to any interaction. 24 Overall, ethical action is complex and can be viewed from multiple perspectives. Relational ethics causes a shift in thinking from traditional, principle-based ethics that adhere to a more individualistic focus, to attend to how the individuals who are engaging in research-related interactions are interdependent and connected (Bergum, 2013, p. 127). People come to research with histories and experiences and these shape the nature of the decisions that they make (Bergum, 2013, p. 128-129). Thus, using a lens of relational ethics enabled me to examine experiences and perspectives of CBO staff as they worked with researchers on research with marginalized communities. In the context of this thesis, relational ethics helped explain how academic researchers work with CBO staff on research objectives. In the subsequent paragraphs, I describe each concept and the related significance for my analysis. Environment A relational ethics approach moves beyond the conception of the environment as limited to the physical environment to a broader understanding of the environment as something that is present within the broader social, political, historical context in which the individual lives within (Bergum, 2013, p. 129). In relational ethics we recognize that individuals exist in an interdependent environment. The environment can be defined as the circumstances or conditions by which one is surrounded. For example, in the case of CBOs, CBO service providers attend to the environments of individuals, including the social system, society at large, and local communities. The environment is complex and therefore relational ethics must encompass the personal, political, social, ecological, and communal factors that co-exist together (Bergum, 2013, p. 131). Creation and preservation of supportive environments may help marginalized communities improve population health and wellbeing and increase their ability to relate to others. This type of environment fosters freedom and choice for making decisions, inclusive of 25 individuals and social choice. Overall, there is a need to create supportive environments for marginalized communities to support the freedom and choice for making decisions regarding research participation to drive ethical action. Embodied Knowledge The principle of embodiment encompasses combining the body and mind so that scientific knowledge and human emotion are weighed evenly (Bergum, 2013, p. 132). In relational ethics, embodiment refers to the role that emotions play in our ethical actions. When conducting research, the researcher needs to acknowledge their own vulnerability as they try to understand the participant’s story. There needs to be a balance between sensitivity to another’s situation and perspectives, while understanding that one’s own perspective may be different (Bergum, 2013, p. 133). Embodied knowledge focuses on healing the division between body and mind, and the divide between subjective and objective knowledge. It is important that when doing research with communities experiencing marginalization and following a relational ethics approach, holistic support is provided which addresses individuals’ bodies, minds, spiritual dimensions, as well as their environments. I used this principle throughout my analysis by reflecting on my own beliefs and understanding regarding ethical engagement and trying to understand and analyze the experiences and emotions of the participants that were being interviewed. Throughout my analysis, I focused on trying to understand the emotional experience of the staff working in the various CBOs to understand their perspective and experience in a more holistic manner. Mutual respect Mutual respect within a relational ethics perspective refers to being respectful to ourselves and others (Bergum, 2013, p. 133). Mutual respect requires recognition that people or groups may have varied opinions, beliefs, and values when interacting. In research relationships 26 between researcers and participants, individuals have different access to and use of power and diverse types of knowledges (Bergum, 2013, p. 134). Mutual respect focuses on the interactive and reciprocal nature of respect (Bergum, 2013, p. 134). Mutual respect is reciprocal, it cannot occur if researchers work without CBO staff members’ understanding, interdependence, personhood, and connection. When thinking about the other elements of relational ethics, the connection between body and mind and objectivity and subjectivity should be integrated and respected in the relationship. Therefore, in this study I focused on the reciprocal relationship between two people participating in research by avoiding the hierarchical domains and the us versus them dichotomy. I focused on the unique perspective of both the interviewer and participant, analyzing how the interviewer let the participant guide the narrative and enrich the knowledge generated. Engagement Ethical engagement is also a central concept of relational ethics. Ethical action begins with meaningful engagement by understanding a person’s situation, perspectives, and vulnerabilities (Bergum, 2013, p. 134). Relational engagement involves looking at the phenomenon together and understanding that there is strength in sharing different perspectives respectfully (Bergum, 2013, p. 135). Engagement is about human-to-human connection. Engagement is not only the behavioural process of communication such as active listening, eye contact, and touch, but also a capacity to relate and be with one another. Engagement is built on the development of trust between academics and community organizations. In this thesis, I analyzed the data by looking for ethical engagement by attempting to understand to what level participants felt heard by researchers in their previous experience with research and I provided recommendations on how to build that capacity. 27 Summary of Relational Ethics Through these four concepts I described the CBOs experience working with academic researchers, noting the inevitable need for research to achieve common goals. The focus of this thesis, however, was how these four concepts may help illustrate how the relationship between CBO staff and academic researchers can be more ethical, based on the CBO staff members experience, practice, and recommendations. Data Collection This study draws upon a subset of data from a larger project examining ethical and methodological challenges within health research with PESW. The original project was a 3-year study, funded by the Canadian Institutes of Health Research (CIHR) (Bungay et al., 2022; Bungay et al., 2023). It was an empirical inquiry into the ethical context of health research, specifically focusing on PESW. The Ethics Project, as it was named, received ethical approval by the UBC Behavioral Research Ethics Board. Utilizing an analytical framework of a critical ethical inquiry (CEQ), the authors applied concepts of social justice and equity in the analysis. Data collection involved conversational interviews which explored the types of research methods that participants had previous experience with. The interviewer also asked participants about their decision-making process around how they chose to participate or not participate in research, the focus of the studies they chose to engage with, and their experiences of research involvement. Specific topics that were covered in the interviews related to consent, participation incentives, and recommendations for improved research practices with PESW. Structured demographic questions were not asked due to confidentiality and privacy concerns. Purposeful recruitment and sampling were used throughout the research study. Most of the recruitment occurred in British Columbia, Ontario, and Manitoba (Bungay et al., 2022). 28 Data collection and analysis for this thesis occurred iteratively and included a secondary analysis of qualitative interview data with community service organization staff that were collected in a separate study concerned with examining the interrelated ethical and methodological challenges in health research associated with sex work. This activity is described in detail in the subsequent sections. Data Sixteen anonymized transcripts from in-depth interviews with CBO staff were included as data in this study. The 16 transcripts were collected as part of a larger, national study funded by CIHR and led by my supervisory committee members Dr. Bungay and Dr. Guta. Within the larger study, the investigators specifically sought to explore research participation from the perspective of researchers, CBO staff, and people with lived experience of sex work who have participated in research (Bungay et al., 2022). Within this larger study, 16 CBO staff were purposefully recruited to share their experiences through one-on-one interviews with a member of the research team (Bungay et al., 2022). Interview topics included CBO experiences with research including the types of studies they were involved with, their role in research projects, and their perspectives about specific ethical issues such as consent, incentives, confidentiality, harm, and the impact of research within their communities. CBO staff were eligible to participate if their CBO met at least one of the following inclusion criteria: “a) listed as a collaborator on funded studies, b) were known by this study’s team members to engage in research activities, or c) were identified by researchers during interviewers” (Bungay et al., 2022). Data Analysis I employed a reflexive thematic analysis (TA) approach, as described by Braun & Clarke (2006; 2019), to my analysis of the secondary data. Reflexive TA is well suited for this study 29 because it provides a rich and detailed description of the experiences of CBO service providers, while generating new knowledge (Braun & Clarke, 2019; Braun & Clarke, 2021). This technique also allowed for the analysis to be theoretically informed – by relational ethics – but still follow an iterative-inductive process to discover new patterns in the data and analyze the phenomenon, which is also the appropriate procedure for ID (Braun & Clarke, 2021). Also, TA is a well-established analytic approach when analyzing participants’ experiences. I engaged in the six phases of reflexive TA: (1) familiarization with the data, (2) generation of codes inductively, (3) construction of initial themes, (4) revising and reviewing potential themes, (5) defining and naming the revised themes, and (6) producing the report (Braun & Clarke, 2006; Braun & Clarke, 2019; Braun & Clarke, 2021). First, I familiarized myself with the data by reading and re-reading the CBO staff interviews. I recorded my initial thoughts and reflections about maintaining trustworthiness throughout the analysis process (Braun & Clarke, 2021). The specified interviews were selected because they were complete, data rich and included varied experiences of participants that enabled me to specifically address the research questions concerned with CBO staff experiences and recommendations for ethical research engagement. Next, I began organizing the data based on similar meanings that resulted in an initial coding framework (Braun & Clarke, 2006). I reviewed these codes with my supervisor who was familiar with the data, and we worked to identify a shared list of preliminary codes that described the CBOs staff experience with research, specifically as it related to knowledge, power, and ethical action. After reaching a consensus, I used Microsoft Word and written organizational methods to organize the data which helped me develop the initial themes for the analysis. These themes were then reviewed and revised as needed to ensure the validity of the data set. By consistently going 30 back to the original data and comparing the potential themes, meaningful patterns began to emerge across all the data being analyzed (Braun & Clarke, 2021). This part of the process is also where it was essential to reflect and utilize the four elements of relational ethics. By using relational ethics as a theoretical perspective, I was able to be transparent and reflect on my own concerns and feelings throughout the data analysis process. I also ensured that I respected the experience of the participants by sharing their stories and honouring their responses. An audit trail of the decisions was kept during this entire process to ensure dependability and confirmability (Polit & Beck, 2017, p. 787). To conclude the analysis, themes were defined and named, and a report was produced that addressed the outlined research questions in this study. Research Rigor There were several limitations present when doing a secondary qualitative analysis. Qualitative findings are developed from the perspective of the researcher, and that unique outlook may lead to bias in the data which may be exaggerated in a secondary analysis (Beck, 2018, p. 13). To establish rigor and try to be aware of the ways my perspectives as the researcher may influence the analysis, I focused on four principles based on Lincoln and Guba’s (1985) framework, including credibility, transferability, dependability, and confirmability to ensure trustworthiness in the data (Polit & Beck, 2017, p. 787). Credibility was established by ensuring that the data related to the research questions, as well as through detailed data analysis (Polit & Beck, 2017, p. 787). As credibility looks at the strength and truth of the data and its interpretation, I revised and revisited my constructed themes through reflexive TA to ensure confidence in the research findings (Polit & Beck, 2017, p. 787). Also, even though I was not present for the original study, two members of my supervising committee, who have extensive knowledge and experience in studying ethical research practices 31 with people experiencing marginalization, were part of the original research team. Therefore, when it was needed, I sought support when trying to ensure that I appropriately understood the original data. I provided a detailed description of the research context and the assumptions guiding the study to maintain the principle of transferability (Polit & Beck, 2017, p. 788). Furthermore, to ensure dependability, as this principle relates to the reliability of the data over time (Polit & Beck, 2017, p. 778), I made sure to keep an audit trail of the decisions made, to reflect and confirm that I did not make mistakes in my conceptualizing of the data and interpretation of the results. And finally, the last principle that I addressed throughout the research study was confirmability. It was vital that the data represented the views of the participants and that my interpretations were based on their knowledge and expertise rather than my own assumptions (Polit & Beck, 2017, p. 788). I kept revisiting and reviewing the original data when questions arose about potential findings, as well as I continually discussed difficulties in theme production and knowledge generation with my advisors. Another major concern surrounding this thesis was that the original research dealt with sensitive topics that may have been triggering for the clients, the secondary analyst, and the reader of the final thesis. Before beginning to read and analyze the interview transcripts, I acknowledged that because I did not collect the original data, I may have had strong emotional responses to the interview transcripts which may affect the interpretation of the results (Beck, 2018, p. 13). To avoid this concern, I maintained reflexivity, or the practice of critical self-reflection, including acknowledging my own personal bias and positionality, to understand and address how my emotions and personal opinions may impact the research process (Dodgson, 32 2019). Reflexivity was also essential to reflect on how the knowledge generated from this study was constructed to further guide my analysis on how ethical qualitative research with marginalized communities is developed (Dodgson, 2019). Ethical Considerations As this was a secondary analysis of data involving human participants, I obtained ethical approval from the Behavioural Research Ethics Board at the University of British Columbia (BREB H22-01208) to review and analyze the interview transcripts. Once approval was granted, I was able to access the transcripts. The data used for the secondary analysis was anonymized prior to my engagement with the data. The transcripts were already de-identified and cleaned by the original study investigators to remove any identifying information. Unique IDs were already assigned as part of the original data cleaning and analysis. No contact was made with the participants as they had been previously contacted to participate in the original study. All participants included in this secondary analysis did not opt-out of future use of data and consented to the use of their data for a secondary analysis. To maintain privacy and security of the data, all electronic files were stored on a secure server that was password protected and encrypted, accessible by my supervisor and Principal Investigator, myself, and co-investigators. Data was never stored or downloaded onto an unsecured computer. All hardcopy files and hand-written notes were stored in a secure, locking cabinet for which only I and my supervisor, Dr. Bungay had the key. The cabinet was in the PI’s office. Data will be retained at the Capacity Research Unit at UBC for five years after the work is completed. All electronic files will continue to be stored on a secure server that is password protected and encrypted. All hardcopy files and hand-written notes will be stored in a secure, 33 locking cabinet for which only Dr. Bungay will have the key after the completion of the project. I had no conflict of interest to declare for this study and I did not receive any funding to complete this thesis. Chapter Summary In this chapter, I provided an overview of the original study and the data set that will be used throughout this thesis. Then I outlined the process of the secondary analysis. I also detailed the theoretical underpinnings of this study and described the procedure for the data analysis. I reviewed the strategies and procedures that I used throughout the whole process to ensure ethical principles were being upheld. Finally, I described some of the ethical considerations which were undertaken throughout this process. 34 CHAPTER FOUR: FINDINGS Introduction In this chapter, I present the findings from the data analysis. This chapter begins with a summary of the participants and a brief context for the secondary data. I then focus on the main findings, specifically, CBO service providers’ relationship with academic researchers, their motivations for engaging with researchers, and their recommendations for ethical research practices and relationships between CBOs and academic institutions. Introduction of the Three Themes There are three main themes presented in this analysis. The first theme relates to CBO service providers and their research relationships. In exploring this theme, I report on how CBO-research relationships occurred and provide some examples of positive and disruptive CBO-research relationships that emerged from the analysis. The first theme also covers how staff at CBOs acted as gatekeepers to prevent research harm. The second theme addresses CBO staff members’ motivation for research engagement, and I will discuss some of the most common reasons why CBO staff members engaged in research. The third and final theme explores recommendations for ethical research. Here I will discuss both recommendations to improve research practice, as well as recommendations to improve community engagement. Summary of Participants The 16 CBO staff that were originally interviewed were “from across Canada and worked in not-for-profit organizations, most of which had been formed by community members' experience of sex work” (Bungay et al., 2022). Some of the members of the organizations interviewed served people of all genders, while others served self-identifying women (Bungay et al., 2022). It is also important to note that many CBO staff had multiple roles in the research 35 relationship, as some of them were also research participants and some also had experience working in sex work (Bungay et al., 2022). Context for the Secondary Data The CBO staff were all experienced in research engagement in a variety of ways including facilitating recruitment, conducting data collection, and participating as research participants. While there was also a variety of study designs and approaches, common shared designs included randomized control trials and epidemiological studies. Data collection activities included such practices as surveys, interviews, and the collection of biomedical samples, such as blood. Findings Overview This study examined the experiences of CBO staff with research, specifically the relationships between CBO staff and academic researchers and how these relationships may contribute to ethical research practices. This study also examined the recommendations that CBOs have for academic researchers when working with and doing research with marginalized communities. When thinking about Relational Ethics and how it was used to explain the findings in this thesis, it is important to make the distinction that I focused on ethical action. I utilized the four components of Relational Ethics, specifically mutual respect, engagement, embodiment, and environment, to support the three main themes. Throughout the transcripts, service providers of CBOs described a similar story. CBOs understood and accepted that to drive meaningful, ethical action and policy change for marginalized communities they needed to engage with research. CBOs also saw the value in research and expressed a great desire to participate in research. As well, CBOs were not naïve about how our society functions. They understood that to receive funding from government 36 agencies and influence lawmakers and decision makers to facilitate change, they needed to present evidence that there is a real need for that money. Therefore, CBO staff knew that to create change, specifically create change in policy and laws, evidence in the form of research was needed. The problem with this need to work with researchers to drive change, is that research relationships between communities, organizations and educational institutions are not always ethical. There were clear and harmful power dynamics between CBOs and academic institutions and as a result CBOs often acted as gatekeepers trying to safeguard participants from the harms of research. There were however many recommendations provided by CBOs of how to make this relationship (between the CBO service providers and researchers) much more ethical. These recommendations are discussed in the discussion section of this thesis. These recommendations are critical to achieve a common goal, which is meaningful engagement (or ethical action) and to create change in policies, laws, and communities. To summarize, CBOs and academic researchers both possess immense and unique knowledge that they realize need to be used together. Unfortunately, there is a lot of power imbalance between CBOs and academic institutions that often make these relationships unethical and harmful for not just the CBOs but also the communities they serve. However, by following recommendations set out by CBOs, I illustrate that CBOs and researchers can continue to work in more ethical ways to drive and achieve ethical action. Findings The first theme I discuss includes the analysis of CBOs and research relationships, specifically how relationships occur, examples of both positive and disruptive relationships, and 37 the CBOs role as gatekeepers of community members participating in research. The second theme focuses on the motivations of CBOs to engage in research participation. And the third theme reveals the recommendations from CBOs on ethical research practices and relationships between CBOs and researchers. CBOs and Research Relationships How Relationships Occur When referring to relational ethics, every relationship needs to originate from somewhere (Bergum, 2013, p. 128). This is also the case for researchers who want to engage with CBO service providers on research activities. Not every participant, out of the 16 service providers interviewed, described how the relationship between their organization and the research team would start. However, some participants described what processes were in place at the time of data collection when researchers contacted them to share information about their research studies and ask them to participate. The CBO service providers spoke openly about their reflections when they were contacted to participate in research. They weighed the pros and cons of participating in research, which ranged from financial compensation, the sensitivity of research questions, and the value the outcomes would bring to the community. They looked at the meaning behind the research and how it would affect their clients. This process is summarized by the following excerpt: Transcript 74 “And then, from there, it would be about, okay, so what's in it for our clients, other than, say, just an honorarium? Or sometimes an honorarium is clearly laid out, so what kinds of questions are they going to be asking our clients? Are they sensitive to our clients and the different contexts of work that they find themselves in and therefore the different kinds of concerns and triggers that they might have? Is there going to be any sort 38 of deliverable to the community, or is it just sort of deliverable for the academic? Is there something practical, basically, that's going to come out of it that's going to have some sort of tangible good outcome for our clients.” The analysis showed that it was critical for CBO staff to ask questions regarding the research engagement and the expectations of the community-academic partnership prior to engaging in research. It appeared that researchers contacted CBOs that they knew actively participated in research, knowledge about participation appeared learned from websites, word of mouth, or the reputation of the organization in the community. When researchers contacted the organization to participate in research, the CBO staff asked questions related to the potential benefits for CBO clients, honorarium, the sensitivity of the research material, deliverables to the community, and the outcomes of the research. If the research objectives and practices seemed to align with the views of the CBO and what was important to them and their clients, then the relationship between researchers and CBOs was more likely to occur. None of the 16 participants reported contacting academic institutions or health authorities themselves to inquire about research opportunities. Most of the participants did not elaborate on how the relationships between CBOs and researchers began, but one participant stated that the health authority would contact them when wanting to conduct health research focusing on specific health issues and services. This request was summarized in the following statement: Transcript 32 “Well, we’ve had questions brought to us from the health authority around accessing Hep C services– and difficulties or experiences” Examples of Positive Relationships 39 All participants expressed positive and negative experiences with the research process. Participants reported positive experiences with research when their relationships with researchers were respectful, voluntary, and valued, as illustrated by the following account: Transcript 32 “I mean it was done in such a respectful way to me, as far as like ‘We really value your input here. You have a choice of whether or not you want to do it,’ I had my chance to speak when we were all there.” Here the conversation and engagement with the researcher was seen as respectful and meaningful because it was completely voluntary to participate and share the lived experience. When referring to relational ethics, mutual respect encouraged the participants to feel like they had an opportunity to share their voice, be heard, and be valued. This positive interaction helped shape the participant’s opinion and view of research and researchers, and as a result might continue the research engagement in the future. Overall, many participants associated an ethical relationship with a positive relationship with the research team and the Principal Investigator. For example: Transcript 31 “And she's had a great working relationship with our guys, and she's worked on multiple projects and community efforts with them before, with our community. So, I think her level of competency and familiarity and even the fact that she has that recognition with our guys when they came in… Like, they love her. They immediately want to talk to her, it was great. But [other name] is great with that too. She helps us out sometimes with any kind of community stuff, and, again, really positive response to her all the time.” This example helps illustrate that having a researcher that had a good reputation, or an ongoing relationship with the community was incredibly important to CBOs and the people that 40 they support. The researcher had experience working on community projects not associated with academic research, which was described as demonstrating to the CBO staff that this researcher valued the community, and as a result might have encouraged research participation by that community in the future. Especially if the community felt like the researcher's work was meaningful and ethical. Therefore, the characteristics of the researcher mattered when building an ethical relationship. The characteristics of the researchers themselves were a key component in establishing an ethical relationship between CBOs and academic research. Another factor that was reiterated by the participants was the comparison between previous and current research practices overall. As noted in the following excerpt, one evolving practice related to the questions researchers would pose to participants: Transcript 54 “Research? Way back, it was more wicked questions and questions you wouldn’t want to answer. Taking it home and no one to talk about after, because it brings back all the memories. And now it’s all different.” This statement shows that there has been improvement in the type of questions or topics that researchers were asking about and doing research on. It is important to note that even though something is better than it previously was, it does not mean that there is no room for improvement. This statement illustrates that from the perspectives of some CBO staff, researchers have taken steps to try and mitigate invasive questions, however as further findings illustrate there is still a lot of work to be done. The practices around confidentiality have also improved, as well as adhering to cultural norms, as highlighted by the following exemplar: Transcript 54 “I think the questions have gotten better and it’s more confidential. Confidentiality is one of them. And there’s some traditional aspect in it. The smudging first” 41 Many of the participants spoke to the fact that ethical relationships are based on ethical action, specifically that the relationship and engagement in research would yield practical results like a change in outdated and harmful policies. This example of ethical action is summarized with the following excerpt: Transcript 71 “It's very precious, important information about a population that's very marginalized. And until we can get that info out about what that experience is, and if we're talking about the laws for example, if we're not able to share stories and experiences and information with policymakers or government about if we're not able to say, "Look at this research. It shows that the laws as they currently are put sex workers in more danger in these and these ways. Here are all these experiences that these people have shared," it's harder to ignore and it makes a case for important change that needs to happen and for people's improved working conditions and dignity and safety.” It was highly important for CBOs that researchers focus on gathering relevant information about different marginalized communities through research and then appropriately share those experiences with policymakers and governments to drive actionable change. Overall, the findings illustrated that an ethical relationship between CBOs and researchers would yield research that is hard for decision makers to ignore. It is thus critical, that research yields relevant findings for CBOs to have influence on changing laws and policies to improve working and living conditions for heavily researched and affected communities. Examples of Disruptive Relationships After reviewing some positive relationships that the staff of CBOs have experienced there were also many examples from participants which demonstrated negative and disruptive relationships. Staff of CBOs shared that many of the negative experiences of participants were a 42 result of disruptive behaviours from researchers, specifically not respecting or valuing the participants, their time, expertise, and recommendations. This phenomenon was illustrated by the following statement: Transcript 58 “The lady that interviewed me was just not even really interested in what I had to say. Scribbled some notes in some café downtown [city] by [geographical location] and wrote stuff in there about…(chuckles). She had twisted my words around, and my mother, still to this day, will not speak to me about that interview.” The findings highlighted that at times when participants participated in research, they felt like the interviewer was not fully present and engaged in the conversation. Participants felt like their words were altered and their true experiences were not shared as they were meant to be. This action by some interviewers was an ethical concern as it does not reflect the expert knowledge of the participants. Interviews may have direct negative consequences for participants in terms of their relationship for example, with their family and they may therefore cause harm to the participants through research participation. Another common problem revealed by the participants was the feeling of being used by the research community. The following excerpt illustrates this feeling: Transcript 37 “So they just never engaged with the researcher. And the other reason…and then the other employee, who’s still here with us, she felt that when she would see the researcher out in the community, the researcher would avoid her. For example, she told me a story about, she’d be in a line-up for a bank, and she would be one step ahead and totally just ignore her and dismiss her. But when she needed something, “Oh, you’re so wonderful and great.” This employee didn’t feel this woman has our back.” 43 This example illustrates the lack of a genuine connection between the researcher and participants and translates into disruptive engagement rather than meaningful community engagement. These kinds of relationships reinforce the unequal power dichotomy between community members and researchers because it establishes the research relationship as a transaction of the researcher wanting to get valuable information from participants without giving something back to the community. It also showed a lack of respect for this CBO staff member when she was ignored in the community by a person who was a colleague. Other examples of disruptive and negative research engagement were illustrated through what participants described as the “unwritten expectation” that once a participant agrees to research participation, they feel like they need to provide all the information that is asked of them even when they do not feel comfortable sharing such details. This sense of obligation illustrated power dynamics between participants and researchers, contributing to vulnerability and potential violations in autonomy among participants, as illustrated in the following exemplar: Transcript 31 “It's a weird experience to go into a room with two people you don't know who aren't therapists and counsellors or anything and just have to tell them things. And even though you're always given the option to not answer, there's always this sense of obligation that you should. And, I've answered a lot more questions that I'm uncomfortable with than I've passed on.” In addition to threats to autonomy, such practices can cause harm. Sharing traumatic and triggering personal information with people whom you do not know, and who do not have the same inherent trust as counselors or therapists was identified as a significant harm from research participation. The participants spoke to the confusion concerning consent and a lack of clarity 44 about what people are consenting for, thereby creating serious concerns about the voluntariness of research participation. Gatekeeping Against Research Harm The findings highlighted that CBO service providers also possessed power. To protect communities from the imbalance of power, CBO staff noted that they felt they must safeguard participants and act as gatekeepers. Overall, CBOs’ staff often described their role as facilitating or impeding access to hard-to-reach populations that require a lot of trust to be able to engage with, as emphasized by one of the CBO service providers: Transcript 74 “So, people usually see us as a gatekeeper, right, as giving or helping give access to a hard-to-reach population.” It can be argued that this access is one aspect which gives CBOs power. CBO service providers have worked continuously to build genuine connections with communities and so they are able to screen researchers and research projects when researchers initiate a research partnership. This vetting process was highly present in the findings. One participant described some of the biggest concerns that their CBO had when deciding on whether they will work with researchers. The concerns were summarized in the following way: Transcript 74 “I think, for us, our biggest concern was we didn't want people coming in and sort of exploiting sex workers and treating them as sort of a curiosity – drop in and drop out sort of thing.” This academic curiosity was also previously reported in the section about power dichotomy. It was vital for CBO staff to ensure that research would meaningfully benefit the community, specifically the appropriate community which researchers are claiming they are interested in learning more about. One of the biggest aims of CBOs’ staff in gatekeeping was to 45 prevent harm that may occur as a result of participating in research. This decision-making process was critical to the power which CBO staff held. This same vetting process was illustrated by another participant, which was highlighted in the following exemplar: Transcript 54 “I would read what they’re going to do first, what kind of research, and if it matches with the girls I work with.” The findings highlighted that the goal of CBOs was to ensure that the research matched with the population and that there was benefit that would be measured, seen, and felt by the community. It was also revealed that the CBO staff had the power to decline engagement in research if they believed the research would be harmful or if it did not match with the actual population that the CBOs support. Unfortunately, sometimes mutual respect and trust did not occur, the consequences of which greatly impacted the type of research that educational institutions were able to carry out as illustrated by the following example: Transcript 23 “I would say we avoid doing direct research as much as we can. We are more open to doing other types of research that affects the population. So like I can give you an example, like doing a discourse analysis of funding applications. So that very much impacts the women but it’s kind of a little bit...keeps them protected for lack of a better word. It was revealed that because of fear of harm and distrust with academic researchers, CBOs sometimes chose not to participate in community research where researchers can have access to the community directly. The findings’ described research was important but the harm that research may cause often outweighed the benefits. Therefore, CBO staff members hold 46 power in their ability to vet and safeguard potential participants from the negative consequences of research through their role as gatekeepers. CBOs and Research Relationships Summary Although not explicitly stated in all participant interviews, the way in which relationships between CBOs and researchers formed varied with no concrete protocol or procedure in place. However, there were many similarities in the type of questions CBO staff ask themselves prior to engaging in research with researchers, specifically how the research will impact the population that is being researched and if action is going to be taken to solve problems. Also, the participants shared both positive and negative examples of research participation and specifically highlighted the experiences they had with the types of relationships they have formed between themselves and researchers. And finally, a topic that almost every single participant discussed was the notion of CBOs acting as gatekeepers for accessing marginalized communities and safeguarding populations to try and protect communities from harm that may come from research. Motivation for Research Engagement The staff at CBOs discussed that there were many different reasons that CBOs engaged with research including, the benefits to the community members through such practices a honorarium. Motivations also included potential funding sources for the CBOs as well as the opportunity for CBOs to support members to have an active role in shaping information about their community. One participant summarized the often highly controversial issue surrounding the honorarium for research participants, in the following account: Transcript 58 “And research is important. It is. And like I said earlier, I think this is really great what you guys are doing. It's long overdue, but a lot of people…Over the 47 years, hearing from my friends and other participants, a lot of people had bad experiences with interviews, but they want to do them because there's an honorarium.” This statement supported the finding that research was important, it was needed and there was often a benefit to conducting research with marginalized communities. However, the findings also showed that even when research caused additional harm, or even when participants had negative experiences with research, this staff member’s experience was that community members still choose to participate because there was an honorarium attached to research activities, which created an income-generating opportunity for people. Therefore, the honorarium continues to be a key driver for individuals wanting to engage in research. Service providers at CBOs also noted that much of the funding available for research purposes is only reserved for academia and is not accessible to CBOs or services that are not affiliated with an academic institution. Furthermore, funding was seen as only accessible for very specific problems or required to meet objectives which might not align with the CBO. For example, it was illustrated by the findings that often funding was linked to societal politics and expectations, as illustrated by the next excerpt. To secure funding some researchers felt like they have to change the narrative to suit the funding bodies: Transcript 37 “Consulting with an organization that’s not peer run, and that a lot of people actually have…they’ve never come out and… because of political reasons and funding reasons, that they are pro-decrim, which has been a huge sore point for people. A lot of sex workers, not happy with how they play politics with their lives and funding. One day they’re meeting with the church, sex work is bad and we rescue the poor women. But when they’re meeting with a more progressive organization, oh, no, we’re cool and we’re peer driven.” 48 This statement highlighted that researchers may feel pressured to change the story and adjust their research objectives based on their partners, and the partners’ agendas or beliefs. Participants also identified the need for partnerships between researchers and communities because they fulfilled the funder’s requirements to have funding be associated with a principal investigator with an academic background. As well, the complicated process of filling out the needed paperwork and proposals for funding to get approved favoured the academic community. This process which may be incredibly difficult to navigate was illustrated by the following statement: Transcript 71 “I think it would be funding that's not tied to academia, I guess, in a way. So having to have, say if you're applying for research funding, having to have a professor who's the principal investigator, all this. And also research that's by and for sex workers too, depending on the crowd or the people that are doing the research or want to do the project, even those processes of applying for funding is not accessible. Even for academics it can be complicated and it's a lot of work to fill out grants, proposals. And the whole application and the paperwork involved is pretty daunting to begin with, so there's that barrier. And then, you were saying before, just how a lot of research… I mean if you're applying to CIHR, the outcomes need to fit with the granting body's priority areas.” As it turned out there was complexity in trying to secure funding for a research study. Organizations appeared to be more likely to participate in research that was attached to funding because that can help further the organization’s agenda. Funding was also thought to help CBOs tackle greater service and systemic issues that their members may face, which may be out of the scope of the original research study objective or aim. Through funding, there was motivation to 49 engage in research to ensure that the organization and the community which they represent had their voices heard and their needs met, as illustrated in the following excerpt: Transcript 32 “Again why is it being done? Kind of what is it attached to? I find like the agency that I work with they’re more willing to do research that is attached to funding. There always seems to be some sort of agenda. And even for myself, like I have an agenda. I have an agenda for our voices to be heard. That’s my agenda. To really have a chance to be involved in the discussion. That’s my agenda. I’m pretty upfront with that. That’s why I like to part-…I’m not doing this to please the health authority. I know for myself that when it comes to the health authority, like health and safety supports, which are a huge thing for women, period, and we run into it all the time, there absolutely needs to be changes and there needs to be research done in order to hopefully get these changes.” It was apparent therefore that CBO staff motivation focused on addressing the issues relevant to the affected communities and for their experiences to be recorded and acted upon. Additionally, research participation was motivated by the need to bring about desired change as described here. Transcript 71 “I think research about sex work and with sex workers is important because it's voices that we don't often hear. And those voices and experiences can tell us a lot about the kind of stigma and discrimination sex workers face, the kind of dangers that the laws create for their lives and their working conditions. And so I think it's really important information to gather.” Having the voices of marginalized populations heard through research was vital as supported by the above statement. There was motivation to participate in research by CBOs 50 because the people that they support often did not have the opportunity in society to reflect on and discuss the issues that are affecting them today. Participants viewed research as providing important opportunities to tell those stories and to hopefully create change for the issues affecting the community. An example of this opportunity was to address the stigma and discrimination that sex workers face, including poor working conditions that are a result of current policies and rules for sex work in our society. Personal empowerment was also a motivation for research engagement. As noted in the following excerpt, having contributions acknowledged and publicly visible in presenting the findings was important to participants. Transcript 32 “Whatever happens or may not happen with that, it was like they saw it. They saw there was proof. It wasn’t a colossal waste of…They listened, and not only did they listen, but they put it exactly how we said it. It literally was what I, what we took as note was exactly… And even when I was reading it out to them suddenly, they go, “I said that! I said that!” (laughs) Like there was this…And it was very empowering.” This finding showcased the importance of seeing participants’ experiences written out exactly how they were experienced, giving power and voice to the individuals sharing their perspectives with researchers. Positive experiences like being listened to and valuing the expertise the participants provided, motivated people to further participate in research and to tell their stories for the hope of meaningful change. The findings also referred to the importance of sharing the research findings with other community members who also contributed to the research and who access CBOs. When the results of the research are transparently relayed to community members, they can see themselves and their stories relayed accurately in the final product. 51 Recommendations for Ethical Research Staff’s overall recommendations can be categorized into two categories, those aimed at improving research practices and those intended to improve community engagement. Recommendations to Improve Research Practice Many of the participants shared common practices that researchers can implement to improve the way they work with community members, from perspectives of people who work in the CBOs and support individuals who participate in research studies. Some common suggestions included building trust with the participants prior to engaging in data collection, practicing transparency, protecting confidentiality, and disseminating the findings within the community. These practices were summarized and shared in the following exemplar: Transcript 32 “Spend a little bit of extra time building the relationship of trust with … if it’s specific to sex work. If it’s specific to sex work is building a relationship as us being very, very transparent. And letting people know the end result, like if you want to see this final document. We’re really careful about confidentiality with sex work.” Many CBO staff listed recommendations that highlighted the need for more ethical research practices during the data collection process of research studies. Participants noted that it was vital to try and avoid the use of possibly triggering questions for the participants, as highlighted by the following recommendation: Transcript 58 “Is that it's really important that they respect the sex worker, that they're not going to be asking heavy, hard, raw questions. They've got to realize that this person has to leave there and is probably homeless, is probably taking the honorarium money to use to just numb what they just went through, right? Yeah, honorariums are important. 52 Follow-ups are really, really important. That's what I want to say. Just be careful. Tread lightly.” The findings showcased that the reason why researchers needed to think meaningfully about the type of questions they were asking was because they did not know the emotional capacity of participants that they engaged with in conversation at any given moment. The triggering questions may cause harm for participants after the research is completed and without proper follow-up, participants may experience long-lasting negative effects from the research. The findings revealed this type of harm was an ethical concern. Another recommendation identified by the participants was the need for the research community to acknowledge research participants as experts in their lives and experiences. The findings reported that research participants were described as the knowledge holders and their experiences need to be taken as fact. Transcript 74 “You have to pay people for their time and their expertise, see them as experts, see them as knowledge holders and respect that, and see them as real people… And groups or individuals that you invest in, which means that, as you say, you come back and you share your knowledge so it's just not a one-directional extracting kind of process.” The data showed that the bi-directional and transparent process needs to be clear and relational. As illustrated to maintain an ethical relationship, the relationship needed to go in both directions instead of being one-directional where the researcher took the information from the participant and offered nothing in return. This sentiment was supported by most of the participants interviewed in the primary study. The analysis revealed that there needed to be a process in place where the researchers, the CBOs and community members could share the 53 power. This process needed to occur with participants, and their feedback needed to be accounted for in every step of the research process, as illustrated in the following statement: Transcript 71 “Then I guess also having – when possible – sex workers look over your draft or look over the transcript and be able to say, "Actually, that's not really what I meant," or, "I don't agree with how you presented what I said here," or, "Can you take this out?" So trying to share that power.” It was recommended that researchers shared their findings and data collection with the participants to verify the experiences that participants choose to share. This practice was seen as affording community members and CBOs an opportunity to make sure that their voices were appropriately represented and that the information on which findings were drawn on were consistent with participants’ experiences. This practice was also described as improving participant’s engagement in the research process, further establishing meaningful connections with marginalized communities and the CBOs which support them. The last recommendation concerned the need for a debriefing process for participants, especially when triggering research questions were involved. One participant summarized it effectively, by stating the following: Transcript 37 “There needs to be support. There needs to be some sort of debriefing, some sort of… either a support worker or a social worker, someone there. There needs to be… and I don’t know what the best thing is, they would. But hearing that is… that’s huge, that piece. The aftercare piece. Now what? After you’ve opened up all these wounds…” Similarly, another statement reinforced the recommendation of having a clear and intentional debriefing process by a trained professional to mitigate the harm that might occur 54 because of difficult and triggering subject themes when doing research with marginalized communities. The following statement suggested the inadequacy of this debriefing process currently: Transcript 74 “And I think that's the thing that is so woefully inadequate is the debriefing for clients in the moment is inadequate when people are not trained, do not have sort of life experiential knowledge in what is this like for them, and cannot possibly understand how these questions might impact people, and therefore are unprepared or sort of inoculated, I guess, from the impact.” Support for participants was noted to be required after the research, with trained personnel who could talk to participants about any triggering questions or how the research has affected them. Research can open the past and participants identified the need for having protections in place to prevent past trauma from re-surfacing and preventing it from escalating. Support workers, counsellors, or social workers were described as appropriate people to be present for individuals after research activities were completed. Recommendations to Improve Community Engagement Recommendations were also shared to improve the engagement between the academic community, the CBOs they reach out to, and the participant populations which researchers want to research. The findings illustrated that it was important that researchers acknowledged that there was a great power imbalance between themselves and the population. It was seen as important to understand that the researcher was an outsider who was interacting with and writing about a real person, a person who has experiences that have shaped their life. This phenomenon was summarized with the following exemplar: 55 Transcript 71 “I think just the basics, being conscious of being an outsider, being conscious of having a certain position as a researcher, being conscious of the power difference between you and the person that you're speaking with, obviously not treating that person like some fascinating specimen. Taking some steps to reduce that power imbalance, and whether that's through involving sex workers in different steps of the research process, or making sure that your consent forms are well understood, making sure that you understand the importance of anonymity and confidentiality and privacy and how those things can work, or how important they are in another way for people who work in an industry that's criminalized and who maybe whose friends or family, they don't know that they are sex workers” This statement supported the recommendation for the need to decrease the power imbalance between researchers and participants by honoring that participants have lived experience in the stories they share with the research team. Therefore, it was vital that the researchers only gathered information that was truly relevant to the research objectives to avoid the often-harmful academic curiosity which may make the research experience more triggering than needed. From the participants’ perspectives, meaningful engagement was understanding one’s power and ensuring that one does not abuse it. Improving community-based research practices to improve community engagement was also discussed. To appropriately engage CBOs and community members, participants recommended the need for the community to be involved with the entire research process. CBOs and academic institutions were described as able to work together more effectively if funding allocation was shared and peers were involved in the research process, as demonstrated by the following statement: 56 Transcript 54 “If they want to understand the population what they’re targeting, send out the community-based research. Dual funding for example. If you send us funding to [community service organization 3] out of their own budget and telling us, “We want to know about Winnipeg’s meth use,” so we can be…all the peers can become interviewers, and most of the peers would be more comfortable talking with a peer.” This recommendation encompassed involving the CBOs by getting peers to facilitate some of the research activities, such as interviews for example. This recommendation was based on ensuring that the researched community was involved in the knowledge generation process for a research study to make sure that the findings were as accurate as possible. The decision-making processes concerning the types of supports and services needed were also noted as important: Transcript 32 “People who are accessing services should absolutely be involved with the creation of services. Because they’re going to tell what you need. “Don’t tell me what I need,” Like “I’m the one coming here to get it. How would I tell you what I need?” And together we can figure out what works for everybody.” The final recommendation to enhance ethical research concerned knowledge translation. CBOs staff described wanting to know what happened to the information gathered from their clients. They recommended that researchers provided CBOs, in plain language, a detailed description of the study findings and the tangible actions taken to address the findings, as summarized by the following account. Transcript 37 “Just give us one paragraph of plain language that says, we researched this. We found that this… and you guys… the importance for you guys is this, and this is what it… but we never got that.” 57 This example listed the main recommendations which CBOs would want to receive from research partners including the research objectives, the findings, and the importance of the findings on affected communities. Unfortunately, as this participant highlighted, this practice often does not happen. Findings Summary Overall, the data revealed that staff who work for CBOs have extensive experience with research, oftentimes having experienced both participating in and facilitating research projects. Participants revealed that it was important to ask many questions about the research projects that researchers wanted CBOs and their members to participate in. The staff showcased the many motivations for which they and their community members may want to participate in research. And finally, they provided many recommendations to improve research practices between CBOs, communities experiencing marginalization, and academic researchers. 58 CHAPTER FIVE: DISCUSSION AND RECOMMENDATIONS Introduction In this chapter, I discuss how this study contributes to the knowledge of current ethical community engagement practices for research with people experiencing marginalization. This knowledge is taken from the perspectives of CBO staff. This study's main objectives were to examine the ethical experiences of CBO staff engaging with research and to generate recommendations to enhance ethical research practices with CBOs. Knowledge generated from this study may help researchers interested in community-based research practices, including nurse researchers, students, and other healthcare professionals. Researchers may be able to learn more about ethical research practices and implement them in their training when partnering with CBOs, their staff, and subsequently community members who access CBOs’ services. In addition, the findings from this study may help to inform ethical guidelines and/or policies concerning research. Finally, this chapter also discusses the recommendations for future research in this area. Summary of Key Findings The findings of this study illustrated that CBO staff have extensive knowledge and experience with research. CBO staff research expertise arose from many avenues including participation as research participants, facilitating research projects in their organization, and by supporting clients that may have participated in research in the past. The findings illustrated the importance of CBO staffs’ persistent querying about research practices employed by academic researchers for the safety of the organization’s members. The findings further illustrated many examples of motivating factors for their members to engage in research. These factors included benefits of research to community members, opportunities for 59 CBOs to have an active role in sharing information about the communities they work with and recruiting more funding opportunities for the organizations to continue their work. Drawing upon the experiences of CBO staff, numerous recommendations were identified to enhance research practices between CBO staff, the communities they serve, and the academic researchers conducting research in the communities’ and organizations’ spaces. The thematic analysis illustrated three overarching themes, including the different components of the CBO staff-research relationship, the motivation of CBO staff to engage in research, and the recommendations for academic researchers to engage in more ethical research. The findings illustrated that CBO staff research engagement begins with the development of a relationship between the CBO service providers and researchers; a process that is complex and underpinned by staff’s concern for the safety and benefits for their organization and their members. Specifically, the findings demonstrated the importance of CBO staff clarifying expectations for their organization and members, as well as the safety of data collection measures used in research. Such practices required a significant time and resource commitment, for which the staff were not reimbursed nor was this work factored into their regular workload. CBO staff spoke often about examples of what they termed “good” and “bad” research practices that they either witnessed, heard of, or experienced. As discussed in chapter four, research was considered positive or disruptive to the research-CBO relationship and research experience. Positive research relationships were categorized as researchers treating CBO staff with respect, and focusing the relationship on ethical action, meaning that the relationship would yield tangible results like for example, a change in clinical practice. Disruptive research relationships were ones that included troublesome behaviour from researchers like disrespectful practices towards the CBO staff including not valuing their expertise, time, or experience. 60 Participants also spoke to the unequal distribution of power and negative power dynamics between CBO staff, clients, and researchers which contributed to participant vulnerability and negative outcomes. Furthermore, the findings revealed that CBO staff often take on the role of gatekeepers. In all participant interviews, CBO staff considered that one of their duties was to safeguard potential research participants from being accessed by researchers to protect those communities from potential research harm. The second major finding from the thematic analysis pertained to motivation for research engagement. These motivations included honorariums for research activities, funding sources for the CBOs, and an opportunity for CBO staff to have a voice in shaping how the communities they represented are presented and understood in the public eye. Overall, one of the biggest motivators for CBO staff to engage in research was to support their communities and have the communities’ voices be heard. This motivator was revealed to be especially true when discussing the issues affecting communities in their day-to-day realities. The final finding pertained to recommendations for academic researchers to make their research practices more ethical and suitable for the communities they desired to work with. The recommendations included two categories, research practices, and community engagement. Research practices may be improved by establishing and building trust with participants prior to engaging in data collection, being transparent throughout the process, protecting participants’ privacy, and practicing appropriate knowledge translation and dissemination of information. Community engagement may be improved by acknowledging a power imbalance between academia and the community and actively working on addressing it through the power of generating new applicable and meaningful knowledge. Discussion 61 The findings suggested that there was a critical need for researchers to engage with CBO staff who work and serve target populations that researchers may want to study. This need for collaboration was shown to come from the understanding that CBO staff and the organizations they work for know the needs of the target community (Pratt et al., 2020; Saleh et al., 2022; Scruby et al., 2017). This finding was supported by the literature, specifically that often this understanding was the basis for the need for engagement (Pratt et al., 2020; Saleh et al., 2022; Scruby et al., 2017). When interpreting the findings, and looking at the first major theme, CBOs and research relationships, one could see that the importance of the research project was understood in relation to addressing the needs of the CBO staff, the community they represent, and the researcher carrying out the research activities. Both the findings and literature review showcased that CBO staff and academic researchers needed to achieve their own goals, which in turn facilitated the foundation of the community-academic partnership and helped CBO staff deciding to participate in research (Pratt 2020; Turin et al., 2022). The findings from this study were supported by the literature in the way that CBO staff wanted to engage with other stakeholders, including academic researchers, when the proposed research benefits the needs of the target community, through its outcome, purpose, and/or objectives (Fielding-Miller et al., 2022; Pratt et al., 2020; Scruby et al., 2017; Turin et al., 2022). Through the findings it became clear that when CBO staff are actively involved, they can recruit appropriate participants, help develop instruments, participate in data collection, support the data analysis, and make recommendations for further research processes, which is also supported by other sources (Fielding-Miller et al., 2022; Pratt, 2020; Saleh et al., 2022). 62 An extensive focus of the findings looked at positive and disruptive CBO staff and researcher relationships. The results of this thesis, supported by the literature, showed that positive relationships occur between CBO staff and researchers when researchers build on the existing strengths and resources of the community (Battaglia et al., 2019; Fielding-Miller et al., 2022; Neufeld et al., 2019; Pratt, 2020; Pratt et al., 2020; Turin et al., 2022; Youn et al., 2019). Overall, collaboration between CBO staff and stakeholders was positive and research capacity was built when the CBOs are engaged throughout the research project, starting at the beginning of the study, rather than only engaging at one point in time (Coffey et al., 2017; Fielding-Miller et al., 2022; Pratt et al., 2020; Turin et al., 2022). This commitment and frequency of engagement ensures that the findings represent the community being studied. Trust was central to a positive engagement by CBO staff, a finding which is well substantiated in the literature. In fact, similar to other researchers, trust was paramount to any ethical relationship. Trust involved researchers seeking the input and adhering to the recommendations put forth by CBO staff as well as consistent clarity and transparency of communications and actions within the CBO-academic partnership (Coffey et al., 2017; Fielding-Miller et al., 2022; Pratt et al., 2020; Turin et al., 2022). The findings, like the literature, illustrated the need for academic researchers to address the power dynamics between CBO staff, the organization they represent, the researchers, and the communities being studied. Contrary to studies that were done by Battaglia et al., (2019) and Pratt et al., (2020), these power imbalances were not a result of CBO staff lacking training and expertise in the academic research process. Instead, the findings highlighted that it was the responsibility of researchers to treat CBO staff as knowledge experts and equal partners in the relationship by ensuring true decision-making power and fair compensation. Overall, from the 63 findings, it was interpreted that the academic- CBO partnerships are more likely to be successful and positive, for both the CBOs and researchers, if academic researchers intentionally and meaningfully work on relationship-building, that is built on a foundation of respect and trust. There were some interesting and unexpected results from the findings that were highlighted in the literature but did not translate into what the 16 CBO staff members viewed as their experience. Some of the findings were not congruent with other research concerned with ethical engagement between researchers and CBOs. For example, some studies (Prat 2020; Pratt et al., 2020; Saleh et al., 2022; Switzer et al., 2019) noted the problematic use of tokenism as a means for researchers to include community members and staff. Specifically, the literature review outlined that if the CBO staff engagement was not appropriate in a partnership, such as in the way that certain communities and individuals are used as symbol stakeholders meant to increase the diversity of partners and to make it appear as working meaningfully together with communities; the outcomes of that partnership may be inadequate to the target community (Prat 2020; Pratt et al., 2020; Saleh et al., 2022; Switzer et al., 2019). However, this study’s findings illustrated that the 16 CBO staff members did not explicitly mention the concept or feelings of tokenism. Even though this concept was not mentioned explicitly, when looking deeper into the findings one could see the subtle mentions of CBO staff feeling like at times, they were asked to participate in research to solely appease higher level decision makers and academic ethical review boards who craved more representation within research that was coined as being community-based. Recommendations The CBO staff identified many recommendations to improve research practices between themselves, academic researchers, organizations, and the clients accessing the CBOs’ services. 64 Some of these recommendations found both in the literature review and the findings from this analysis included: focusing on establishing trust with CBO staff and the target community, building capacity, and improving overall health and wellbeing for the target community (Neufeld et al., 2019; Youn et al., 2019). Although challenging, when looking at the results of this study, building trust focused on being transparent and honest with CBO staff and community on what the researcher was trying to accomplish, what the was goal was in carrying out this research, and for who was this research is intended. Regarding trust building, the overall recommendation includes being open with participants and staff about the research process through showing the types of data that is being collected, as well as being transparent about the research findings. This transparency was viewed as being critical when establishing trust and building a true partnership between key members. When interpreting the findings, it was revealed that CBO staff believe that one of the most challenging parts of engaging with participants from marginalized communities was the risk of re-traumatizing individuals through the data collection process by asking triggering questions through surveys or interviews. Researchers may not be able to eliminate triggering or upsetting questions or themes due to the subject they may need to study. Therefore, the recommendation for addressing sensitive subject themes in research can be described as the need for researchers to be transparent with participants about the nature of the content of data collection instruments. In addition, having appropriate follow-up and after-care in place once the research activity is carried out is also essential. Researchers need to have a plan for talking about upsetting material with their participants, including CBO staff and work on debriefing techniques to care for participants after data collection is completed. 65 Trust, transparency, respect, and compassion towards CBO staff and the communities they work with cannot occur without the acknowledgment that research partners and/or participants are the experts in their field, lives, and experiences. This study findings concurred with other research that research participants, including CBO staff, were the knowledge holders, and their experiences and perspectives needed to be regarded as fact (Pratt et al., 2020; Saleh et al., 2022; Scruby et al., 2017). As a result of this finding, for researchers to engage with a community they must first understand the community, the context they live, work, and play in, and the experiences that might shape their everyday realities. The recommendation for positive research practices includes researchers investing their time into learning about and from the community about what matters most to them, and going into the spaces and places where community members live, work, and play. This understanding may also be achieved by sharing the research power with participants. Sharing the power refers to encouraging researchers to share their research process, data collection and findings with the participants to verify the experiences that are chosen to be shared and reported on. Through transparency and sharing the power, research participants, like CBO staff for example, may be able to ensure that their voices are appropriately depicted in the studies and that the information they provide illustrates their experiences appropriately. The findings highlighted that there was a need for greater research that can lead to further engagement with CBOs by other academic researchers and organizations to further work on improving meaningful connections between research, CBOs and affected communities (Battaglia et al., 2019; Coffey et al., 2017; Neufeld et al., 2019; Scruby et al., 2017; Turin et al., 2022). When interpreting the recommendations provided by the CBO staff it was evident how important 66 it was to remain in contact with CBO staff and follow-up over time to provide the organization with new opportunities for engagement further facilitating community-academic partnerships. One clear recommendation provided by the service providers and supported by the literature in this study was the role that academic researchers play in building capacity for CBO staff to carry out their own research projects with the skills learned from academic partnerships on the research process (Battaglia et al., 2019; Scruby et al., 2017; Turin et al., 2022; Youn et al., 2019). This capacity building may increase the pool of community members ready and willing to engage in the research process independently or as research partners (Battaglia et al., 2019; Scruby et al., 2017; Turin et al., 2022; Youn et al., 2019). Finally, once research is completed and a study becomes published both the findings in this study and the literature agreed that it was vital for researchers to disseminate the findings to the communities providing the data to further support knowledge translation (Scruby et al., 2017). Therefore, the recommendation includes that when partnering with CBO staff and their clients it is important to disseminate the findings in clear, plain language focusing on what data was used to generate the findings. This step of the partnership needs to occur as soon as possible to help facilitate the findings into meaningful action for the population being researched. Study Implications Although this thesis used secondary data; it was able to add value in generating new knowledge by answering research questions that were different from the original work. Participation of community partners, through this secondary use of data, helped facilitate the development of questions that reflect the pressing issues affecting communities in their everyday lives. Through this analysis, one may be able to further the discussion of what ethical community-based research practices look like. This thesis may serve as an opportunity for 67 researchers, especially students who are beginning their academic careers, and who wish to engage in research with CBOs, their staff, and the communities they serve. This work may serve as a starting framework for building strong community ties and relationships with CBO staff and their organizations. When working in the community, the researcher might encounter distinctive styles of collaborative work which may vary from what they have learned in their professional careers, such as how to navigate ethical practices that benefit not just the researcher but also the participants throughout projects. Therefore, it is the hope that this thesis may give some direction for researchers and students wanting to engage in community-based research, specifically the desire to work in collaboration with community organizations and CBO staff. It is the hope that the findings and interpretations taken from this study are expanded and fulfilled through interventions and changes in policy and guidelines for collaborating with CBO staff and the clients they represent. Overall, through this analysis it has become evident that the research community needs to be aware of the needs of CBO staff, the target community, and the research team’s own research agenda prior to engagement with communities. With this study, it is the goal that researchers may continue to build capacity upon the existing strengths of communities and CBO staff, to facilitate positive collaboration and partnership between the CBOs and academic researchers. The findings and recommendations in this thesis should be utilized during all phases of a research project, and they need to be integrated in future research processes in ways that benefit all parties, while fostering a long-term commitment to working with CBO staff in the future. Limitations 68 This study was not without its limitations. This analysis included a small sample of CBO staff who all worked with organizations that supported PESW in one Canadian city. This analysis was not intended to have the findings be generalized to other regions in Canada and the findings reported here do not cover or address the needs of all CBO staff who work in other not-for-profit organizations and who serve other communities. Furthermore, this study did not consider the clients themselves or other stakeholders that may be part of an organization. Demographic data was also not included in this thesis and as a result further research needs to be conducted to explore the experiences of these other vital members of the research team. As mentioned above it is important to remember that the voices in this study came from staff working at CBOs who primarily work with community members who have experience with sex work, and therefore may not experience the same challenges or situations as other communities. Therefore, all the findings and experiences shared in this analysis are likely to vary depending on the communities providing the voice. Future research must be guided by many voices, specifically by the community being affected at any given time. Research into the experiences of clients accessing the CBO spaces and working with service providers representing the organization are also essential to improving ethical research practices and creating meaningful ethical action and change for affected communities. Conclusion Despite this work being a secondary analysis of prior gathered data of a small sample of CBO staff who worked with a specific population in the DTES, there were several key insights that can be used to improve research practices when embarking on community-based research with community organizations. The staff in this study shared numerous challenges they and their 69 clients have experienced, which contributed to their extremely cautious stance when deciding on whether to participate in academic research studies. Any researcher wanting to work with CBOs, their staff members, and their clients must first consider these findings and recommendations to create a safe space for communities to engage in research. When conducting future research with communities, academic researchers need to value and embrace CBO staff experiences, expertise, voice, and contribution to ensure that ethical and meaningful research practices are upheld to generate needed interventions and knowledge about the communities that researchers wish to study. While reading the experiences of CBO staff for this thesis it was very troubling to learn that there was no established protocol or procedure for academic researchers to follow when engaging with CBO staff, the organization, or the community itself. CBO staff tried to do their best in advocating for ethical research practices but there was no process for research staff to be accountable for how they conduct their research besides following the guidelines established by governing academic review boards. With this study, my intent is not to discredit the importance of completing and following the rules and regulations set out by institutional bodies. Instead, it is to highlight that there is a need for the creation of additional guidelines and process that academic researchers should follow to ensure that the research they conduct with CBO staff and the communities is meaningful and ethical based on the expertise of those staff and communities. A major issue is the lack of established procedures and training that academic researchers need to complete before embarking on doing research with CBO staff and subsequently marginalized communities. There is a need for the development of a dedicated guideline or the completion of a 70 quality assurance reflection program to ensure quality and accountability by academic researchers when doing research with CBOs, their staff, and the clients they serve. Additional research should further explore CBO staff’s perspectives about ethical research practices when engaging with academic researchers, especially CBO staff who work with different populations and communities as their experiences may differ then what was uncovered during this study. The need for more ethical research, including a more standardized approach to conduct and carry out research with CBO staff was a prominent issue during this study. However, there remain unanswered questions about the feasibility of implementing a procedure for academic researchers when engaging an organization in community-based research. Research is also needed for evaluating current community-based research practices used by academic researchers, especially in certain geographical areas of importance like the Vancouver’s DTES due to the highly researched communities that live and work in that area. 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Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Bungay, Vicky
Ethical issues in research engagement with community service organizations : a secondary analysis
Text