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

OBJECTIVES

Parkinson'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.

METHODS

We conducted semi-structured interviews with 12 LGBTQ+ PD caregivers. Thematic analysis based on grounded theory was conducted to identify key themes.

RESULTS

Six prominent themes were identified, including Service Gaps, Prioritizing Self-Care, Geographic Disparities, Meaning in Caregiving, Caregiver Advocacy, and Informed Decision Making.

DISCUSSION: Our 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.