Perspectives on Healthcare Access and Equity of People With Parkinson's Disease Identifying as Lesbian, Gay, Bisexual, Transgender, Questioning, Intersex, or Two-spirit

Study Rationale:

Older adults who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+) have worse health than non-LGBTQ+ older adults. They and their care partners face greater barriers to getting healthcare and support from friends and family. This is because of lifelong stigma, discrimination, and isolation often separated from their families. Parkinson disease (PD) is a disease that usually appears in older age, so there may be many LGBTQ+ elders with PD, but there is currently no information on how people with PD who are LGBTQ+ are coping with their disease and aging. This study will begin to clarify their needs.

Hypothesis/Research Question:

What are the experiences and perspectives of LGBTQ+ people living with PD, their care partners, and physicians managing people with PD?

Study Design:

The investigators will interview 20 people with PD, half who identify as LGBTQ+ and half who are not. The investigators will also interview their care partners and physicians who treat people with PD. From the responses to the interview questions, investigators will create a survey that will be sent to people across the country.

Impact on Diagnosis/Treatment of Parkinson's Disease:

By understanding what LGBTQ+ people with PD need, and what ideas they have for improving their healthcare, better systems for meeting their needs can be built.

Next Steps for Development:

With this understanding, future work can focus on educating healthcare providers and clinics to improve the ways they talk with and treat LGBTQ+ people with PD.