Western University Scholarship@Western Electronic Thesis and Dissertation Repository 6-27-2019 2:30 PM Working with Youth as Stakeholders in Mental Health System Transformation: An Institutional Ethnography of a Service Organization in ACCESS Open Minds Eugenia Canas The University of Western Ontario Supervisor Wathen, N. The University of Western Ontario Co-Supervisor Berman, H. The University of Western Ontario Iyer, S. McGill University Graduate Program in Health Information Science A thesis submitted in partial fulfillment of the equirr ements for the degree in Doctor of PhilosophyFollow this and additional works at: https://ir.lib.uwo.ca/etd © E Pugeniaart of the Canas Health 2019 and Medical Administration Commons, Health Information Technology Commons, Health Services Research Commons, and the Mental and Social Health Commons Recommended Citation Canas, Eugenia, "Working with Youth as Stakeholders in Mental Health System Transformation: An Institutional Ethnography of a Service Organization in ACCESS Open Minds" (2019). Electronic Thesis and Dissertation Repository. 6327. https://ir.lib.uwo.ca/etd/6327 This Dissertation/Thesis is brought to you for free and open access by Scholarship@Western. It has been accepted for inclusion in Electronic Thesis and Dissertation Repository by an authorized administrator of Scholarship@Western. For more information, please contact [email protected]. Abstract As national system- and research-agendas invest heavily in the improvement of youth mental health services delivery, the discursive and policy impetus for the inclusion of youth as advisors has increased. However, we know little about the work of youth engagement (YE) in the everyday realities of a care-delivery organization. Does the engagement of youth advisors ultimately inform care? This dissertation addresses the knowledge concerns of YE with a detailed account of the experiences of youth advisors, service providers, and an organization in the process of services reform. I used institutional ethnography to (1) reveal the day-to-day work of engaging young people as advisors to a mental health services delivery site; (2) examine the linkages and tensions between the discourse of YE and its realities in practice; and, (3) understand the processes by which youths’ knowledge is articulated and admitted to organizational decision-making. Fieldwork consisted of meeting observations and interviews with service providers and youth advisors, and a discourse analysis of YE practice texts to understand how their discursive framings coordinate local work. Detailing engagement work made visible how service providers negotiate between a ruling discourse of engagement and the realities of mental health services delivery. They adapt to and resist problematic elements in the ideology of engagement, including its individualizing rhetoric and the omission of structural and social considerations. At the same time, they employ a youth-centred orientation made concrete by the youth advisors, using it to alter established organizational processes that have excluded youth as knowers from the institution of healthcare. Findings from this study were analyzed in light of recent work on epistemic injustice. This proved to be a useful lens, making more precise whether and how YE makes a difference to youth, the organization and the culture of mental healthcare. ii My findings underscore the necessity of framing YE as the labour of epistemic inclusion of youth in the design of formal systems of care. In telling this story of YE work at one service site, I suggest a new pathway for the operation and evaluation of engagement, as underpinning appropriate care and, ultimately, health equity. Keywords Mental health, participation, patient engagement, youth engagement, institutional ethnography, mental health services reform iii Lay Summary Alongside national investments in the improvement of youth mental health, enthusiasm for youth engagement has increased. However, we know little about what it means to engage youth as advisors of a care-delivery organization. Does the engagement of youth advisors ultimately inform care? This dissertation addresses the knowledge concerns of YE with a detailed account of the experiences of youth advisors, service providers, and an organization in the process of services reform. I used institutional ethnography to (1) reveal the day-to-day work of engaging young people as advisors to a mental health services delivery site; (2) examine the linkages and tensions between the language and ideals of YE and its realities in practice; and, (3) understand the processes by which youths’ knowledge is admitted to organizational decision-making. Fieldwork consisted of meeting observations and interviews with service providers and youth advisors, and a discourse analysis of YE practice texts to understand how they influence the local work. Detailing engagement work made visible how service providers negotiate between the enthusiasm for engagement and the realities of mental health services delivery. They adapt to and resist problematic elements in the ideology of engagement, including its individualizing rhetoric and the omission of structural and social considerations. Findings from this study were analyzed in light of recent work on epistemic injustice. This proved to be a useful lens, making more precise whether and how YE makes a difference to youth, the organization and the culture of mental healthcare. My findings underscore the necessity of framing YE as the labour of epistemic inclusion of youth in the design of formal systems of care. In telling this story of YE work at one service site, I suggest a new pathway for the operation and evaluation of engagement, as foundational to appropriate care and, ultimately, health equity. iv Co-Authorship Statement Eugenia Canas completed the following work under the supervision of Dr. Helene Berman and Dr. Nadine Wathen, and the advisement of Dr. Srividya Iyer. All dissertation committee members have/will be co-authors on publications resulting from the chapters of this dissertation. v Acknowledgments I thank the young people and adults involved in the research, for their generosity and trust towards me. I am grateful to the ACCESS Open MINDS project for financially supporting this project through its Doctoral Studentship program. Through these years, I felt privileged by the formidable support of a doctoral committee who believed in my abilities and showed unfailing kindness and patience while I found my voice. I owe a deep debt of gratitude to my supervisors ─ Dr. Helene Berman and Dr. Nadine Wathen ─ for championing my growth in many significant ways. I am also indebted to Dr. Srividya Iyer, who supported me invaluably from afar: her warm, insightful advice fuelled me every time we talked. I am thankful to my examination committee — Dr. Joanna Henderson, Dr. Vicky Smye, Dr. Gail Teachman and Dr. Fiona Webster — for a rich, thought-provoking discussion of my project. I am honoured to thank friends and colleagues who nurtured my thinking. I am especially grateful to James Shelley, Dr. David Wiljer, Dr. Abe Oudshoorn, Dr. Ross Norman and Dr. Arlene MacDougall for the many conversations and interactions that deepened my understanding of engagement, social justice, youth mental health, and hope. The good friends around me made this PhD possible. I thank my FIMS family for the constant understanding, affection and laughter through the writing stage. I thank Amy Freier, Tanaz Javan, Zak Bronson, Tiara Sukhan, Legden Kelsang and Nicole Dalmer for our coffeeshop sessions through rain, snow and, worst of all, gorgeous weather. I also thank Jill Veenendaal, Yimin Chen, Claire Burrows and Lyndsay Ross for their support throughout these years. My most enduring gratitude is to my family. I couldn’t have done this without my mom’s boundless love, or my brothers’ shoulders to lean on. Last, but not least, I thank Rayne: Dettle, you gave reason, light and love to this project — I all happened because of you. vi Table of Contents Abstract ii Co-Authorship Statement iv Acknowledgments vi Table of Contents vii List of Figures xiii List of Appendices xiv Chapter 1 1 Chapter 1: Introduction 1 Relevance 2 Urgency: the rising impetus for youth engagement. 4 Envisioning youth engagement as transformative. 6 Research Context: ACCESS Open Minds 6 The Chatham-Kent Health Alliance. 9 Theoretical Constructs 9 Discourses shaping the mental health of youth. 10 Neoliberalism and new public health management. 15 Chapter development. 15 Chapter 2 17 vii Chapter 2: Scholarly Context: Youth Engagement 17 Participatory Research 18 The values of participatory research. 19 Structural and knowledge concerns. 20 Implementing and evaluating participatory processes. 22 Y-PAR in mental health services research. 24 Positive Youth and Community Development 26 The values of positive development research. 26 Structural and knowledge concerns. 27 Implementing the values of positive youth development research. 28 Service-user involvement and participation 30 Implementation of service user involvement. 32 Structural and knowledge concerns in patient involvement/consumer participation. 34 Citizen/Public Engagement and Youth Activism 36 Mental Health Services Research and Youth Engagement 39 Chapter 3 41 Chapter 3: Developing the Study 41 Research Questions 41 Institutional Ethnography 42 A new vantage point for studying youth engagement. 44 viii Autobiographical Research Narrative 51 Research Methods 54 The data. 55 Individual interviews.