An inductive qualitative content analysis of stigma experienced by people with rare diseases. Issue 8 (3rd August 2022)

• Record Type: Journal Article
• Authors: Munro, Marla; Cook, Abigail M.; Bogart, Kathleen R.
• Is Part Of: Psychology & health. Volume 37:Issue 8(2022)
• Page Start: 948
• Page End: 963
• Publication Date: 2022-08-03
• Subjects: rare disease -- rare disorder -- stigma -- ableism -- disability; Clinical health psychology -- Periodicals; Attitude to Health -- Periodicals; Public Opinion -- Periodicals; Psychology -- Periodicals; 150
• DOI: 10.1080/08870446.2021.1912344
• Languages: English
• ISSNs: 0887-0446

Abstract

Abstract: Objective: There are more than 6, 000 known rare diseases (RDs), which are often serious, chronic, and progressive conditions. Cumulatively, having a RD is actually common, impacting an estimated 300 million people worldwide. While the stigmatization of some specific RDs has been studied, examining stigma in a large sample of many RDs allows for a broader understanding of patterns. Design: We used inductive qualitative content analysis to analyze survey responses to an open-ended question about challenges of living with a RD among 384 people with 178 distinct RDs. Results: We identified eight codes which were organized under the following three themes: structurally enacted, interpersonally enacted, and felt stigma. People with RDs experience structurally enacted stigma in the forms of healthcare stigma, education/workplace stigma, and an overall lack of accessibility. They also face interpersonally enacted stigma, including insufficient social support, a lack of understanding from others, and capitalist norms of productivity and self-sufficiency. Additionally, they experience felt stigma related to shame and the pressure to pass as able-bodied. Conclusion: Possible solutions to RD stigma include increased education about RDs for healthcare professionals, a societal shift towards prioritizing accessibility, strengthened legal protections for disabled people, and expanded disability justice-focused community organizing.