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

ABSTRACT

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 (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 beneficiaries. Future studies could benefit from meaningfully involving adolescents through youth advisory groups.

KEYWORDS:

• Adolescent participation
• youth
• children
• methodology

Acknowledgments

This 10-year project was jointly funded by the UKRI GCRF Accelerating Achievement for Africa's Adolescents Hub (Grant Ref: ES/S008101/1); Nuffield Foundation [CPF/41513], but the views expressed are those of the authors and not necessarily those of the Foundation; the Evidence for HIV Prevention in Southern Africa (EHPSA), a UK aid programme managed by Mott MacDonald; Janssen Pharmaceutica N.V., part of the Janssen Pharmaceutical Companies of Johnson & Johnson; the Regional Inter-Agency Task Team for Children Affected by AIDS - Eastern and Southern Africa (RIATT-ESA); UNICEF Eastern and Southern Africa Office (UNICEF-ESARO); the International AIDS Society through the CIPHER grant [155-Hod; 2018/625-TOS], the views expressed in written materials or publications do not necessarily reflect the official policies of the International AIDS society; Claude Leon Foundation [F08 559/C]; Oak Foundation [R46194/AA001]; the Leverhulme Trust [PLP-2014-095]; the John Fell Fund [103/757; 161/033]; the University of Oxford's ESRC Impact Acceleration Account [IAA-MT13-003; 1602-KEA-189; K1311-KEA-004]; the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement, and by the Department of Health Social Care (DHSC) through its National Institutes of Health Research (NIHR) [MR/R022372/1]; the Fogarty International Center, National Institute on Mental Health, National Institutes of Health under Award Number K43TW011434, the content is solely the responsibility of the authors and does not represent the official views of the National Institutes of Health; the European Research Council (ERC) under the European Union's Seventh Framework Programme [FP7/2007-2013]/ ERC grant agreement n°313421 and the European Union's Horizon 2020 research and innovation programme (grant agreement n°737476 and n°771468); the UK Economic and Social Research Council, the South African National Research Foundation, the Health Economics and HIV/AIDS Research Division (HEARD) at the University of KwaZulu-Natal, the South African National Department of Social Development. This study was further funded by the Gates Foundation Grand Challenges, the HEFCE-GCRF support fund, Ilifa Labantwana and the Regional UN Inter-Agency Task Team for Children Affected by AIDS.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by John Fell Fund, University of Oxford: [Grant Number 103/757; 161/033]; South African National Research Foundation; Department of Health Social Care (DHSC) through its National Institutes of Health Research (NIHR): [Grant Number MR/R022372/1]; South African National Department of Social Development; Leverhulme Trust: [Grant Number PLP-2014-095]; Fogarty International Center, National Institute on Mental Health, National Institutes of Health: [Grant Number K43TW011434]; Oak Foundation: [Grant Number R46194/AA001]; Janssen Pharmaceutica N.V., part of the Janssen Pharmaceutical Companies of Johnson & Johnson; Evidence for HIV Prevention in Southern Africa (EHPSA), a UK aid programme managed by Mott MacDonald; Nuffield Foundation: [Grant Number CPF/41513]; Regional UN Inter-Agency Task Team for Children Affected by AIDS; European Research Council (ERC) under the European Union’s Seventh Framework Programme: [Grant Number ERC grant agreement 313421,FP7/2007-2013]; UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement; International AIDS Society through the CIPHER grant: [Grant Number 155-Hod; 2018/625-TOS]; UK Economic and Social Research Council; University of Oxford ESRC Impact Acceleration Account: [Grant Number 1602-KEA-189,IAA-MT13-003,K1311-KEA-004]; UNICEF Eastern and Southern Africa Office; European Union’s Horizon 2020 research and innovation programme: [Grant Number 737476, 771468]; the Regional Inter-Agency Task Team for Children Affected by AIDS - Eastern and Southern Africa; Health Economics and HIV/AIDS Research Division (HEARD) at the University of KwaZulu-Natal; Claude Leon Foundation: [Grant Number F08 559/C]; UKRI GCRF Accelerating Achievement for Africa’s Adolescents Hub: [Grant Number ES/S008101/1]; Ilifa Labantwana.