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Published in: BMC Medicine 1/2019

Open Access 01-12-2019 | Human Immunodeficiency Virus | Opinion

Participatory praxis as an imperative for health-related stigma research

Authors: Laurel Sprague, Rima Afifi, George Ayala, Musah Lumumba El-nasoor

Published in: BMC Medicine | Issue 1/2019

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Abstract

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.
Footnotes
1
Etic approaches focus on meanings that come from outside the community which is the subject of a study. Etic epistemologies are developed by communities of scientists and researchers, using conceptual categories and hypotheses that are agreed to be important and are viewed as universal, or as undergoing hypothesis testing for potential universality.
 
2
Emic approaches focus on meaning as understood within a particular group of people. Emic epistemologies can be identified only by close listening to and engagement with the community that is the subject of a study.
 
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Metadata
Title
Participatory praxis as an imperative for health-related stigma research
Authors
Laurel Sprague
Rima Afifi
George Ayala
Musah Lumumba El-nasoor
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Medicine / Issue 1/2019
Electronic ISSN: 1741-7015
DOI
https://doi.org/10.1186/s12916-019-1263-3

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