University of Louisville ThinkIR: The University of Louisville's Institutional Repository Electronic Theses and Dissertations 8-2018 Navigating mental health care access in Louisville : an ethnography of local resources and care assemblages. Laura Drabelle Valentine University of Louisville Follow this and additional works at: https://ir.library.louisville.edu/etd Part of the Other Anthropology Commons, and the Social and Cultural Anthropology Commons Recommended Citation Valentine, Laura Drabelle, "Navigating mental health care access in Louisville : an ethnography of local resources and care assemblages." (2018). Electronic Theses and Dissertations. Paper 3011. https://doi.org/10.18297/etd/3011 This Master's Thesis is brought to you for free and open access by ThinkIR: The University of Louisville's Institutional Repository. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of ThinkIR: The University of Louisville's Institutional Repository. This title appears here courtesy of the author, who has retained all other copyrights. For more information, please contact [email protected]. University of Louisville ThinkIR: The University of Louisville's Institutional Repository Electronic Theses and Dissertations 8-2018 Navigating mental health care access in Louisville : an ethnography of local resources and care assemblages. Laura Drabelle Valentine University of Louisville Follow this and additional works at: https://ir.library.louisville.edu/etd Part of the Other Anthropology Commons, and the Social and Cultural Anthropology Commons Recommended Citation Valentine, Laura Drabelle, "Navigating mental health care access in Louisville : an ethnography of local resources and care assemblages." (2018). Electronic Theses and Dissertations. Paper 3011. https://doi.org/10.18297/etd/3011 This Master's Thesis is brought to you for free and open access by ThinkIR: The University of Louisville's Institutional Repository. It has been accepted for inclusion in Electronic Theses and Dissertations by an authorized administrator of ThinkIR: The University of Louisville's Institutional Repository. This title appears here courtesy of the author, who has retained all other copyrights. For more information, please contact [email protected]. NAVIGATING MENTAL HEALTH CARE ACCESS IN LOUISVILLE: AN ETHNOGRAPHY OF LOCAL RESOURCES AND CARE ASSEMBLAGES By Laura Drabelle Valentine B.A., University of Louisville, 2014 A Thesis Submitted to the Faculty of the College of Arts and Sciences of the University of Louisville in Partial Fulfillment of the Requirements for the Degree of Master of Arts of Anthropology Department of Anthropology University of Louisville Louisville, Kentucky August 2018 Copyright 2018 by Laura Drabelle Valentine All rights reserved NAVIGATING MENTAL HEALTH CARE ACCESS IN LOUISVILLE: AN ETHNOGRAPHY OF LOCAL RESOURCES AND CARE ASSEMBLAGES By Laura Drabelle Valentine B.A., University of Louisville, 2014 A Thesis Approved on July 30, 2018 by the following Thesis Committee ____________________________________ Dr. Angela Storey (Thesis Director) ____________________________________ Dr. Christopher Tillquist ____________________________________ Dr. Sarah Raskin ii DEDICATION I dedicate this thesis to its participants, who shared their knowledge with me and trusted me to do their experiences justice. I hope I have achieved that. “The worst is done, and it has been mended. And all will be well, and all will be well, and all will be very well.” —Julian of Norwich, a closing statement at DBSA meetings (Depression Bipolar Support Alliance 2018) iii ABSTRACT NAVIGATING MENTAL HEALTH CARE ACCESS IN LOUISVILLE: AN ETHNOGRAPHY OF LOCAL RESOURCES AND CARE ASSEMBLAGES Laura Drabelle Valentine July 30, 2018 This thesis examines barriers to care access present in Louisville, Kentucky's community mental health care infrastructure, and how individuals who seek mental health care experience and navigate those barriers. This thesis expands research about the impacts of health care reform following the Affordable Care Act and adds to literature about the political economy of health-seeking behaviors. Drawing on assemblage theory and ethnographic research with both care-providers and care-recipients of Community Mental Health Care Organizations, I argue that both groups attempt to alleviate barriers to care access and facilitate mental health recovery through the development of formal and informal strategies. Examining the ways that these individuals find creative and agentive solutions to the challenges of structural and institutional precariousness and chronic mental illness can be useful findings for developing effective mental health interventions. v TABLE OF CONTENTS PAGE DEDICATION………………………………………………………………………….iii ACKNOWLEDGEMENTS (redacted)...…………………………………………..…...iv ABSTRACT……………………………………………………………….………….....v CHAPTER I: INTRODUCTION……………………………………….. ……...………1 Research Context………...…………………………………………...…………….4 Literature Review……………………………………………………..….………...9 A Brief Overview of Mental Illness……………………………………...…………19 Methodology…………………………………………………………………….....25 Limitations……………………………………………………………………...….32 Research Sites………………………………………………………………....…..34 Chapter Overview………………………………………………………………....39 CHAPTER II: BARRIERS TO CARE ACCESS………………………………..….…41 Individual Barriers…………………………………………………………..……44 Institutional Barriers…………………………………………………………..….58 Environmental Barriers……………………………………………………….….68 Insurance…………………………………………………………………………74 Emergent Barriers and Barrier Interactions…………………………………….78 CHAPTER III: AGENCY AND CARE ASSEMBLAGES…………………………..95 Assemblages, Recovery, and the Experience of Precarity……………………….96 Agency, Person-hood, and Patient-hood: Care-Seekers' Strategies……………109 Experience of Providing Care…………………………………………………..124 CHAPTER IV: TOWARDS A SUSTAINABLE FRAMEWORK FOR MENTAL HEALTH RESEARCH………………………………………………………….136 REFERENCES…………………………………………………………………….…144 APPENDIX…………………………………………………………………………...151 CURRICULUM VITA…………………………………………………………..…...152 vi NOTE FOR THE READER 1. Pseudonyms: All study participants have been given a pseudonym, unless they are identified as using their real name. 2. Terminology: Throughout this text, I use interchangeable terms for individuals working or receiving care from community mental health care systems, to reflect the multiple subjectivities they inhabit. For individuals living with mental illness, I use the terms care-seekers, care-receivers, patients, mental health consumers, clients, members [of an organization]; for service-providers, I use the terms care- providers, employees, staff. 3. Throughout the text, I redacted the names of community mental health care organizations and hospitals unless contextually relevant, to respect the privacy of individuals who participated in my study, especially when care-providers described anonymous examples of their clients’ experiences. 4. I minimally edited quotes for clarity; I often removed details like verbal tics or tangents while keeping the quotes intact. vii CHAPTER I: INTRODUCTION The short bike ride from my apartment to Paul's wound through cluttered traffic. The air was thick with gasoline fumes and music drifting from open car windows. When I arrived, I waited on the front porch, drenched in sweat and breathing lungfuls of hot air. It was the height of summer and a blindingly bright day but when Paul finally answered the door, he led me into a dark, cool apartment. I had arrived anticipating a mess, and took in the sight in the gloom of drawn curtains and stale air. Paul had already begun to clean; things were collected into roughly organized piles. Ash and cigarette butts overflowed the ashtray. Empty cigarette boxes were cluttered together on the living room coffee table, beside soldierly lines of old Styrofoam cups. Bits of dirt clung into the carpet. A stack of dirty dishes climbed from within the kitchen sink. Overall, the apartment was in a telling sort of disarray. This mess had built up around him over the past months, after he had given up on cleaning entirely. Even as he greeted me with a hug and a joke, Paul seemed uncharacteristically drained. He showed me into the bedroom where there were several baskets of clean laundry. We sat on the floor and got to work folding. We casually chatted about things, jumping from topic to topic, evading entirely the fact the Paul had recently been discharged from psychiatric inpatient. Now that he was back at home, he had a lot to attend to. Paul lives with Major Depressive Disorder as a result, he says, from “fairly mid- level to low-level but constant abuse from both peers and adults” throughout his childhood. 1 During our interview, he said that it had been about 28 years since his first hospitalization. So, at the time that I showed up to his house to help him clean, it was not the first time his symptoms had become severe enough to warrant checking himself into the hospital. He had put out a call on social media after being discharged, asking for help piecing his life together after this most recent depressive episode. Like many people who experience mental illness, acts of self-neglect were signals of Paul's declining mental state (Patel et al 2014; Lauder 2002). Years later, when I met Paul to interview him for this thesis, he was also cleaning. He wanted to organize his new apartment where he lived with his new wife, to force a routine which would help him keep an eye on his mental health. Keeping note of behaviors rejecting routine, such