Date of Award
Open Access Dissertation
Carla A. Pfeffer
An estimated 2.7 million sexual and gender minority (SGM) adults 50+ reside in the United States (US) with this number projected to increase to more than 5 million by 2060 (Flatt et al. 2022; Fredriksen-Goldsen and Kim 2017). Medical research, education, and practice in the United States (US) often erase sex and gender variation, thus ignoring the experiences of older adults living beyond Western sex and gender binary systems (e.g., female/male and women/men), particularly transgender, non-binary, and/or intersex (TNBI) populations. Such erasure stems from TNBI older adult structural incompetency or the failure to understand how macro-level systems, institutions, and structures impact TNBI older patients’ social barriers to care (e.g., poor educational/instructional curriculum and practicum on TNBI health, access to social support) in providing quality, effective care to TNBI older patients.
Despite documented greater healthcare need among TNBI older adults, they have long struggled to access quality care due to key factors such as erasure and stigmatizing approaches in medical research, lack of adequate resources and social support, mistreatment by medical providers, and limited evidence-based interventions addressing TNBI older adults’ health and healthcare priorities. The purpose of the present study is to analyze the current social, medical, and political state of TNBI older Americans by determining their unique needs for or barriers to (a) reproductive and sexual health services, (b) advance care planning and end-of-life preparation, and (c) health management during the COVID-19 pandemic.
Data from this study were derived from 50 semi-structured, individual interviews with TNBI older adults who reside in the US. Eligibility criteria for participation were that participants: (a) self-identified as transgender, non-binary, and/or intersex, (b) were 65 years of age or older at the time of the interview, (c) lived in the US at the time of the interview, and (d) consented to be audio-recorded during the interview. Due to participant safety concerns during the COVID-19 pandemic, I conducted 39 Zoom interviews and 11 telephone interviews during data collection. I coded data using NVivo software and conducted inductive analysis, whereby I created a coding scheme consisting of sets of networked codes that I distilled from the data. I reviewed developing categories and themes throughout both data collection and analysis in order to discern emergent patterns and connections.
For the first part of this study, I examined how TNBI older adults – as a medically and socially vulnerable sub-group within sexual and gender minority (SGM) communities – perceive, access, and utilize reproductive and sexual health services. Most respondents described medical provider ignorance in providing (i) SGM-competent and (ii) age-friendly care in reproductive and sexual healthcare settings and consequently responded to medical provider ignorance by (i) opting out or avoiding medical providers and settings and (ii) seeking out SGM-competent care. Such findings pinpoint valuable opportunities for attending to structural competency in reproductive and sexual healthcare systems and interactions for improving TNBI older adulthood and health. For the second part of this study, I assessed how TNBI older adults perceive and plan for aging and end-of-life care experiences. My analysis reveals TNBI older adults’ (i) uncertainty around experiencing a ‘good death,’ along with their (ii) calculated strategies for reducing the possibility of a ‘bad death.’ Such uncertainties both reflect and reproduce health and aging inequities among TNBI older adult populations, while highlighting the consequences of structural incompetency in healthcare for TNBI older adults in US society. For the third part of this study, I examine how TNBI older adults manage and maintain their health during the COVID-19 pandemic. A life course perspective provides an insightful examination into how the COVID-19 pandemic – as an unanticipated life course disturbance – dynamically shapes TNBI older adults’ health management decisions, practices, and challenges. Such findings offer potential ways to enhance structurally competent health services, peer support, and resources for TNBI older adult Americans during the COVID-19 pandemic.
My findings underscore the critical need in maintaining TNBI-competency and age-friendliness within US healthcare systems and interactions, while outlining key ingredients for structural competence when providing care to TNBI older adult patients. Future research should aim to fulfill the health, aging, and care needs and preferences of TNBI adults by tailoring intervention efforts to those from older, racial and ethnic minority, and financially disadvantaged communities. Overall, my research highlights the significance of attending to structural competency in the contexts of medical research, education, and practice, while calling for initiatives working toward improving TNBI health and aging.
Lampe, N. M.(2022). Healthy Aging Beyond Sex and Gender Binaries. (Doctoral dissertation). Retrieved from https://scholarcommons.sc.edu/etd/6900
Available for download on Saturday, October 05, 2024