Abstract
Introduction: Facing healthcare discrimination and barriers to equitable care, many transgender and gender-diverse (TGD) adults are at risk for treatment in later life or during a serious illness that is inconsistent with their wishes. Advance care planning (ACP) is a process for documenting and sharing values, goals, and preferences for future healthcare with the potential to promote the agency of TGD adults in the healthcare system. However, as an emerging body of evidence, the literature on healthcare for TGD adults has notable gaps, and ACP resources designed to meet the unique needs of this population are limited.
Purpose: The purpose of this dissertation research was to (1) review the literature on healthcare for TGD older adults; (2) explore multilevel factors affecting health equity for TGD adults aged 50 years old and older; and (3) develop an advance care planning (ACP) resource with, and for, TGD adults.
Methods: This research was conducted as part of a qualitative descriptive study called Shaping Affirming Futures with Elders of all gender experiences (SAFEage), which consisted of a review of the evidence (Phase 0) and three phases of primary data collection (Phases 1, 2, and 3). In Phase 0, literature on healthcare for TGD older adults was reviewed and synthesized according to guidelines proposed by Whittemore and Knafl. In Phases 1 and 2, data from semi-structured interviews with TGD older adults were analyzed thematically, and themes were informed by the Intersectionality Research for Transgender Health Justice conceptual framework. In Phases 1, 2, and 3, a human-centered design approach was used to collect and analyze data from individual and group co-design sessions focused on identifying and developing ACP resources for TGD adults.
Results: In Phase 0, a review of the literature on healthcare for TGD older adults returned 35 articles that met inclusion and exclusion criteria. Seven themes were discerned, within which 20 healthcare needs and nine healthcare assets were identified for this population (Manuscript 1). Analysis of data from Phases 1 and 2 yielded six themes, with between two and five sub-themes each, that describe multilevel factors affecting health equity for TGD older adults (Manuscript 2). In Phases 1 and 2, participants and researchers articulated a statement of core problems affecting healthcare for TGD adults and created an inventory of ideas for resources to support TGD adults in later life or during a serious illness. In Phases 2 and 3, participants and researchers developed three prototypes of an electronic healthcare decisions resource for TGD adults (Manuscript 3).
Significance: This research addressed gaps in the literature and responded to healthcare needs voiced by TGD adults by engaging members of this population in a participatory process to explore factors affecting health equity within their communities and to co-develop an ACP resource. This resource was designed to promote agency of TGD adults within the healthcare system and to facilitate dialogue with healthcare providers and care partners about wishes for their care in later life or during a serious illness. SAFEage is one of few studies to have practiced collaborative engagement with older adults during the research process. Findings from this study have implications for research, policy, and clinical practice. Among other implications, these findings lay the groundwork for developing interventions to advance health equity among TGD adults; draw attention to the need for policies to mitigate structural and systemic barriers to care affecting TGD older adults; and provide information and tools for clinicians to practice affirming and equitable care for TGD older adults.
