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

Journal: AIDS care

Volume: 33

Issue: 7

Year of Publication: 2021

Affiliated Institutions:  Department of Social Policy and Intervention, University of Oxford, Oxford, UK. Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine, University of Oxford, Oxford, UK. AIDS and Society Research Unit, University of Cape Town, Cape Town, South Africa. Ministry of Education, Western Cape Government, Cape Town, South Africa. Independent. Blavatnik School of Government and Centre for the Study of African Economies, University of Oxford, Oxford, UK. Positive East, London, UK. Optentia Faculty of Health Sciences, North-West University, Potchefstroom, South Africa. Teen Advisory Group, South Africa. School of Psychology, Faculty of Health Sciences, Curtin University, Perth, Australia. School of Public Health, Brown University, Providence, RI, USA.

Abstract summary 

Whilst 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 ( = 60) and researchers ( = 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 beneficiaries. Future studies could benefit from meaningfully involving adolescents through youth advisory groups.

Authors & Co-authors:  Cluver Lucie L Doubt Jenny J Wessels Inge I Asnong Carine C Malunga Samantha S Mauchline Kerry K Vale Beth B Medley Sally S Toska Elona E Orkin Kate K Dunkley Yasmin Y Meinck Franziska F Myeketsi Noxolo N Lasa Samkelo S Rupert Caroline C Boyes Mark M Pantelic Marija M Sherr Lorraine L Gittings Lesley L Hodes Rebecca R Kuo Caroline C Chetty Angelique N AN Thabeng Mildred M

Study Outcome 

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Statistics
Citations : 
Authors :  24
Identifiers
Doi : 10.1080/09540121.2020.1845289
SSN : 1360-0451
Study Population
Male,Female
Mesh Terms
Adolescent
Other Terms
Adolescent participation;children;methodology;youth
Study Design
Cross Sectional Study
Study Approach
Country of Study
South Africa
Publication Country
England