Power to participants: methodological and ethical reflections from a decade of adolescent advisory groups in South Africa.

AIDS Care
Lucie CluverMildred Thabeng

Abstract

ABSTRACTWhilst the HIV response has made significant progress in increasing representation of adults affected by HIV, the meaningful inclusion of children and adolescents has lagged. But this may be a pivotal moment of change. We report on a decade of conducting adolescent advisory groups in South Africa, to reflect on youth advisory processes. Data was collected from 2008 to 2018 from adolescent advisors (n = 60) and researchers (n = 25), and included feedback sessions, social media, anonymous "post-boxes" and interviews. Findings include the value of adolescent involvement in multiple stages of research co-creation and engagement in policy processes, the need for a safe environment and supporting adolescents living in extreme vulnerability. We also discuss the reconfiguring of power and personal relationships, and logistical and financial needs of adolescent advisory groups. Findings suggest that adolescent co-creation of research is feasible, even with very vulnerable adolescents, although ethical considerations need to be carefully addressed. Benefits include increased methodological rigour, enhanced adolescent acceptability of research and the recalibration of research dynamics for the empowerment of their target beneficia...Continue Reading

References

Dec 1, 1995·Social Science & Medicine·A Cornwall, R Jewkes
Dec 1, 2001·American Journal of Public Health·R P StraussG Millett
Jan 31, 2016·Journal of Acquired Immune Deficiency Syndromes : JAIDS·Lucie D CluverLorraine Sherr
May 14, 2016·Lancet·Sabine Kleinert, Richard Horton
Jan 23, 2017·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·Cédric NininahazweNienke Westerhof
May 23, 2017·Journal of the International AIDS Society·Daniella MarkLuann Hatane
Feb 28, 2018·Journal of the International AIDS Society·Rebecca HodesLucie Cluver

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