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Participatory praxis as an imperative for health-related stigma research
Laurel Sprague1, Rima Afifi2, George Ayala3
1Joint United Nations Programme on HIV/AIDS (UNAIDS), Geneva, Switzerland. spraguel@unaids.org.
Background:
Participatory praxis is increasingly valued for the reliability, validity, and relevance of research results that it fosters. Participatory methods become an imperative in health-related stigma research, where the constitutive elements of stigma, healthcare settings, and research each operate on hierarchies that push those with less social power to the margins.
Discussion:
Particularly for people who are stigmatized, participatory methods balance the scales of equity by restructuring power relationships. As such, participatory praxis facilitates a research process that is responsive to community-identified priorities and creates community ownership of the research, catalyzing policy change at multiple levels and foregrounds, and addresses risks to communities from participating in research. Additionally, through upholding the agency and leadership of communities facing stigma, it can help to mitigate stigma's harmful effects. Health-related stigma research can reduce the health inequities faced by stigmatized groups if funders and institutions require and reward community participation and if researchers commit to reflexive, participatory practices. A research agenda focused on participatory praxis in health-related stigma research could stimulate increased use of such methods.
Conclusion:
For community-engaged practice to become more than an ethical aspiration, structural changes in the funding, training, publishing, and tenure processes will be necessary.
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