Perspectives on Healthcare Access and Equity of People With Parkinson's Disease Identifying as LGBTQ+ (LGBTQ+_PD)

Creighton University

Status: Suspended

Conditions: Sexual Orientation; Parkinson Disease

Treatments: Other: National Survey; Other: Focus Groups; Other: Individual interviews

Study type: Observational

Funder types: Other

Identifiers

NCT05502055

2003114-01

Details and patient eligibility

About

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.

Full description

This mixed-methods study has a qualitative study component (1) and a quantitative study component (2):

Component 1) using a phenomenological inductive approach and Grounded Theory methodology the investigators will find and build themes from semi-structured interviews and focus groups with a) LGBTQ+ and non-LGBTQ+ individuals with PD, b) their care partners, and c) physicians to identify the experiences and perspectives on their health care and participation in research.

Component 2) survey development informed by results of Component 1, national distribution, and analysis of LGBTQ+ and non-LGBTQ+ people with PD, their caregivers and physicians, on barriers and access to health and disease information, healthcare delivery and participation in research.

The investigators plan to recruit 10 LGBTQ+ individuals with PD, 10 Non-LGBTQ+ individuals with PD, 10 care partners, and 10 healthcare providers for individual interviews, and 50 LGBTQ+ older adults with PD and care partners for focus groups consisting of 6-8 individuals each. For the national electronic survey investigators estimate needing a the sample size of approximately 380 responses calculated using a 95% confidence level (Z score=1.96), a standard deviation of .5, a 5% margin of error, and a population of 30,000. Purposive and Snowball sampling methods (nonprobability sampling) will be used.

Enrollment: 90 estimated patients

Sex: All

Volunteers: Accepts Healthy Volunteers

Inclusion criteria

• Diagnosed with PD
• Care partner of someone diagnosed with PD
• Health Care Provider providing services to individuals with PD
• Identify as LGBTQ+
• Identify as Non-LGBTQ+

Exclusion criteria

• Non-English speaking
• Inability to communicate via video conferencing

Trial design

90 participants in 4 patient groups

LGBTQ+_PD

Description:

Individuals who identify as LGBTQ+ and are diagnosed with PD

Treatment:

Other: Individual interviews

Other: Focus Groups

Other: National Survey

Non-LGBTQ_PD

Description:

Individuals who identify as non-LGBTQ+ and are diagnosed with PD

Treatment:

Other: Individual interviews

Other: Focus Groups

Other: National Survey

Care Partner

Description:

Individuals who are Care Partners of individuals with PD

Treatment:

Other: Individual interviews

Other: Focus Groups

Other: National Survey

Health Care Provider

Description:

Health Care Providers who provide service to people with PD

Treatment:

Other: Individual interviews

Other: Focus Groups

Other: National Survey