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HSR Citation Abstract

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The Experience of Stigma among People Living with Parkinson's Disease

Rintamaki LS, Witt WP, Weaver FM, Malis R, Breslow D, Simuni T. The Experience of Stigma among People Living with Parkinson's Disease. Poster session presented at: World Parkinson Coalition Inc Annual Congress; 2006 Feb 1; Washington, DC.

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Objective: To explore stigma experiences among people living with Parkinson's disease (PD).Background: Few studies have examined issues of stigma among persons with PD, despite the highly visible and debilitating nature of the disease. Research on stigma in chronic disease shows disease stigmatization to be emotionally detrimental and related to both poor quality of life and health behaviors.Methods: This study utilized a Grounded Theory approach, which involved reformulating and refining research questions as the study progressed to pursue promising lines of inquiry. Participants included both men and women, with early and advanced onset PD. Stage One of this study involved two semi-structured focus group interviews (n = 8) regarding people's experiences with social stigma incurred from living with PD. Focus group data were analyzed using latent content and constant comparative techniques. Based on these findings, more refined questions were developed and employed during Stage Two, which involved indepth, one-on-one interviews with 42 people living with PD. These interviews also were analyzed using latent content and constant comparative techniques. Through this process, the research team codified an inventory of (a) how PD negatively affects people's self-concepts, (b) how people with PD perceive others' attitudes and beliefs about them, and (c) how PD negatively affects social interaction.Results: Participants described experiencing negative self-perceptions as a result of PD, including a sense of vulnerability or diminished self-worth, as well as feeling like an imposition, a failure, and a drain on society. Participants believed others' perceived people with PD as being frail, damaged, inferior, odd, and even contagious. These internal and external perceptions affected participants' social interactions in a variety of ways, including guarded disclosure of one's PD status, insular social networks, and forced and self-imposed isolation. Participants also experienced overt negativity from others, such as stares, nervousness and awkwardness when around someone with PD, social distancing, and expressions of contempt or irritation with a person's PD symptoms. Conclusions: Social stigma can be a detrimental aspect of the PD experience. Future studies are planned to assess the types and efficacy of treatment interventions.

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