Category: Allied Healthcare Professionals
Objective: To identify the lived experience and perspectives on healthcare access and equity of people with Parkinson disease (PwP) identifying as lesbian, gay, bisexual, transgender, questioning, intersex, or two-spirit (LGBTQ+) and care partners.
Background: Older adults who identify as 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. There is currently little information on how LGBTQ+ PwP are coping with their disease and accessing healthcare.
Method: Individual, semi-structured interviews were conducted over Zoom videoconferencing with a subsample of 7 participants in our ongoing study: LGBTQ+ PwP (n=5) and LGBTQ+ care partners (n=2). The planned enrollment of the study includes n=80 between interviews and focus groups. Participants were recruited through purposive sampling from rural and urban areas across the U.S. A phenomenological approach and standard thematic analysis were used to find and develop themes. Trustworthiness and study rigor were maintained by continuous revisiting of data, informal member checking, and reflexive journaling by the research team.
Results: Four structural themes emerged describing the impact of multiple marginalized identities on health and wellbeing: 1) Navigating a complex healthcare system; 2) Lack of representation impacting sense of belonging and respect; 3) Planning for an uncertain future; and 4) Support systems that shrink.
Conclusion: LGBTQ+ PwP and their care partners experience the challenges of living with PD while also balancing medical needs with sociocultural norms and expectations that do not always align with or affirm sexual orientation identity. This underlying mismatch creates added stress, isolation, and barriers to accessing optimal healthcare and support.
References: 1. Bayram E, Weigand AJ, Flatt JD. Perceived Discrimination in Healthcare for LGBTQIA+ People Living with Parkinson’s Disease. J Gerontol B Psychol Sci Soc Sci. Mar 10 2023;doi:10.1093/geronb/gbad046
2. Westwood S, Willis P, Fish J, et al. Older LGBT+ health inequalities in the UK: setting a research agenda. J Epidemiol Community Health. May 2020;74(5):408-411. doi:10.1136/jech-2019-213068
3. Nowakowski ACH, Chan AY, Miller JF, Sumerau JE. Illness Management in Older Lesbian, Gay, Bisexual, and Transgender Couples: A Review. Gerontol Geriatr Med. Jan-Dec 2019;5:1-10. doi:10.1177/2333721418822865
4. Marsack J, Stephenson R. Barriers to End-of-Life Care for LGBT Persons in the Absence of Legal Marriage or Adequate Legal Documentation. LGBT Health. 2018;5(5):273-283. doi:10.1089/lgbt.2016.0182
To cite this abstract in AMA style:T. Mcisaac, K. Sutton, P. Kalcic, M. Mussack, H. Shill. PD-PRIDE: Healthcare experiences of people identifying as LGBTQ+ with Parkinson disease: A qualitative study preliminary analysis [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/pd-pride-healthcare-experiences-of-people-identifying-as-lgbtq-with-parkinson-disease-a-qualitative-study-preliminary-analysis/. Accessed September 23, 2023.
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