Parkinson’s research with inclusion, diversity, and equity: exploring the experiences of LGBTQ+ caregivers of people living with Parkinson’s disease

Sarah Benson, Brittany Castro, Cody Yamada, Jennifer R Pharr, Krystal R Kittle, Jace D Flatt and Jessica A Kelley

The Journals of Gerontology: Series B, 2026, vol. 81, issue 3, gbaf272.

Abstract: ObjectivesParkinson’s disease (PD) caregivers often face significant challenges, including worsening anxiety and depression, declining physical health, reduced quality of life, and a high level of caregiver burden. Research shows lesbian, gay, bisexual, transgender, queer, and additional identity (LGBTQ+) caregivers also experience poorer health, greater financial strain, higher stress and depression, more disability, and barriers to care, yet little is known about the experiences of LGBTQ+ PD caregivers. This study explored the knowledge, perceptions, and care experiences of LGBTQ+ PD caregivers, including their needs and strategies for ensuring equitable care for underrepresented populations caregiving for individuals living with PD.MethodsWe conducted semi-structured interviews with 12 LGBTQ+ PD caregivers. Thematic analysis based on grounded theory was conducted to identify key themes.ResultsSix prominent themes were identified, including Service Gaps, Prioritizing Self-Care, Geographic Disparities, Meaning in Caregiving, Caregiver Advocacy, and Informed Decision Making.DiscussionOur findings highlight the unique challenges and strengths of LGBTQ+ PD caregivers. Future research and health service providers should consider ways to address systemic barriers, the importance of culturally competent support, and both the burdens and resilience experienced by LGBTQ+ PD caregivers. Findings underscore the urgent need for inclusive, culturally competent services and resources to support this underserved population.

Keywords: Caregiving; Sexual orientation; Gender identity (search for similar items in EconPapers)
Date: 2026
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The Journals of Gerontology: Series B is currently edited by Psychological Sciences - S. Duke Han, PhD and Social Sciences - Jessica A Kelley, PhD, FGSA

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