Incorporating Stigma Into Implementation Science: Linking Societal Influence to the Clinical Encounter to Understand Inequities in Healthcare Delivery
Year: 2020
Type: preprint
Study design: Observational Study
Abstract: Background: Disease-related stigma is an important, but under recognized barrier to the implementation of evidence-based therapies. Existing implementation science frameworks do not adequately specify the mechanisms by which the outer societal context produces disparate implementation outcomes. Our aim in this study was to evaluate how stigma influences the implementation of evidence-based hepatitis C virus (HCV) care and, in so doing, make the case for incorporating stigma into the Health Equity Implementation Framework.Methods: From 2015-2019, we conducted a concurrent explanatory mixed-methods study among people living with HCV in Philadelphia. We administered the validated 33-item HCV-stigma scale. Semi-structured interviews were conducted among a purposive subsample of survey respondents. Summative HCV-stigma scale scores and descriptive statistics were calculated. Interviews were transcribed and analyzed for common themes. Survey responses were linked to interview data.Results: Surveys were completed by 265 participants; 22 interviews were conducted with a subset of these respondents. Hispanic/Latinx ethnicity was associated with significantly higher HCV-stigma scale scores (adjusted mean, 81.39 [95% CI, 76.44-86.33] versus 74.28 [95% CI, 70.51-78.05]; P=0.025). In interviews, participants described the impact of stigma on their engagement with HCV care. Stigma associated with their diagnosis contributed to feelings of dirtiness and shame. Participants described the critical importance of interactions with medical providers and the healthcare system as a whole to either facilitating or mitigating the negative impact of enacted stigma on their trust in medicine and willingness to engage with HCV care. Interactions with family and friends, especially surrounding disclosure of one's diagnosis, were an important mediator of the experience of stigma. Hispanic/Latinx participants described greater feelings of isolation and stigma from family and friends as a result of their diagnosis. Finally, participants described the way stigma shaped their and society's perceptions of HCV therapies, including the media portrayal of pharmaceuticals, the high cost of drugs and insurer denials of treatment.Conclusions: Experiences of HCV-related stigma influence engagement with HCV care at multiple levels: patient, provider, family and community, and perceptions of the therapy itself. Incorporating stigma into the Health Equity Implementation Framework can improve the utility of the framework by specifying a mechanism by which the social context influences the uptake of evidence-based innovations.
Institution: University of Pennsylvania
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W4251074050