Creating Visibility: Considering LGBT Older Adults in the Canadian Caregiving Context by Haley Watson A Thesis presented to The University of Guelph In partial fulfilment of requirements for the degree of Master of Science in Family Relations and Applied Nutrition Guelph, Ontario, Canada © Haley Watson, August, 2019 ABSTRACT CREATING VISIBILITY: CONSIDERING LGBT OLDER ADULTS IN THE CANADIAN CAREGIVING CONTEXT Haley Watson Committee: University of Guelph, 2019 Dr. Kimberley Wilson (Advisor) Dr. Robin Milhausen Lesbian, gay, bisexual and transgender (LGBT) older adults are at a greater risk of physical and mental illness when compared to heterosexual/cisgender older adults, largely due to stigma and discrimination. LGBT older adults may also avoid or delay seeking care from formal healthcare systems due to historical discrimination, increasing the demand on informal caregivers as this population continues to age. The current study aimed to explore LGBT older adults’ (aged 65+) experiences with informal caregiving and healthcare services, contributing to the gap of Canadian research on this topic. The data of 50 participants were gathered using an online mixed methods survey and then analyzed using descriptive statistics and content analysis. The results indicate that LGBT older adults have unique needs in healthcare environments, especially in regard to their interactions with care providers. Participants had robust social networks, many of which contained other LGBT members with whom informal caring duties could be shared; however, the anticipated need of formal healthcare services remained. As LGBT older adults continue to age and subsequently may rely on more formal services, translating these results into policy and practice to improve their experiences is of utmost importance. iii ACKNOWLEDGEMENTS The support that I have received throughout this degree has been truly incredible. There were many occasions where the finish line seemed unreachable, and I wouldn’t be crossing it without a community of strength and support. To my amazing advisor and mentor, Dr. Kim Wilson. Thank you for the hundreds of meetings, emails, and informal chats, all of which you provided unparalleled guidance and support. Your kindness and ability to put my (usually stressed/anxious) mind at ease through validation and encouragement was always needed and appreciated. Thank you for introducing me to the wonderful world of qualitative research, sharing your expertise, and allowing me to grow and work alongside you in some incredible projects. I am grateful to have been mentored by such a remarkable researcher and teacher. To Dr. Robin Milhausen, thank you for being a wonderful committee member. Thank you for your endless guidance and encouragement, dating back to my undergraduate days. Your insightful feedback and expertise were so valuable throughout my thesis development and writing processes. Your passion for research is inspiring. To all of my participants, I am eternally grateful and honoured. Thank you for being so open and honest with me and for taking the time to provide me with such insightful data. I can only hope that I have done your words justice. To my family, I cannot put into words how grateful I am for you all. I relied on and valued all of your support, in any and all forms: Breakfast visits, home cooked meals, an afternoon phone call. Thank you for keeping me grounded and for pushing me (gently) when I needed it. Thank you for encouraging me and always making it known how proud you are of me. To Aidan, my rock. Thank you for being so dedicated to me and my process, for loving me even when it may have been hard to do so, and for being the true embodiment of a partner. From getting a puppy one month into my degree (shout out to Mowgli for endless snuggles and for getting me into forests and fresh air when I needed it most), to wedding planning, thank you for always putting us first and for encouraging me to do the same. I am honoured and grateful to grow alongside you and walk through life with you. To my friends, far and near, thank you for always being only a phone call or text away and thank you for all of the humour, love, and support. To my “FRAMily,” thank you for the game nights, co-working sessions, and all of your endless empathy. Thank you for all of your advice and reassurance through this process. I am so grateful that I got to experience these last two years with such an incredible group of humans and researchers. I would not have been able to do this without you all! It takes a village, and I had a great one. iv TABLE OF CONTENTS ABSTRACT .................................................................................................................................... ii ACKNOWLEDGEMENTS ........................................................................................................... iii TABLE OF CONTENTS .............................................................................................................. iv LIST OF TABLES ........................................................................................................................ vi LIST OF FIGURES ..................................................................................................................... vii Introduction .................................................................................................................................... 1 Literature Review ........................................................................................................................... 3 Historical Context and Terminology ..................................................................................................... 4 Political and Legal Changes ................................................................................................................... 5 Health Disparities .................................................................................................................................... 6 Healthcare Access .................................................................................................................................... 8 Social Support ........................................................................................................................................ 12 Informal Caregiving in the Canadian Context ................................................................................... 15 LGBT Informal Caregiving Context ................................................................................................... 17 Rationale....................................................................................................................................... 20 Theoretical Frameworks .............................................................................................................. 22 Method .......................................................................................................................................... 24 Methodological Approach .................................................................................................................... 24 Participants ............................................................................................................................................ 24 Measures................................................................................................................................................. 25 Recruitment ........................................................................................................................................... 26 Procedure ............................................................................................................................................... 27 Data Cleaning ........................................................................................................................................ 27 Analyses .................................................................................................................................................. 28 Results........................................................................................................................................... 30 Sample Characteristics ......................................................................................................................... 30 Caregiving Needs ................................................................................................................................... 33 Healthcare System Improvements ....................................................................................................... 39 Support and Care in Caregiving .......................................................................................................... 51 Summary ................................................................................................................................................ 57 Discussion..................................................................................................................................... 58 Theoretical Discussion .......................................................................................................................... 64 Strengths and Limitations .................................................................................................................... 66 v Future Research ...................................................................................................................................