Managing ancillary care in resource-constrained settings: Dilemmas faced by frontline HIV prevention researchers in a rural area in South Africa.

Natsayi Chimbindi,Busisiwe Nkosi,Maryam Shahmanesh,Janet Seeley,Maureen Kelley,Thembelihle Zuma

doi:10.1093/inthealth/ihaa045

Abstract

BackgroundWe describe the findings from a research ethics case study, linked with a team evaluating a package of intervention services to prevent HIV infection in adolescent girls and young women (AGYW) living in a rural and poor setting of KwaZulu-Natal, South Africa.MethodsWe conducted qualitative interviews (n=77) with members of the linked research team evaluating the intervention programme, programme implementing staff, AGYW enrolled in the intervention programme, caregivers, ethics committee members, Public Engagement officers, community advisory board members and community stakeholders. Data were analysed iteratively using thematic framework analysis. Themes were determined by the study aims combined with an inductive development of codes emerging from the data.ResultsThe findings show that the burden of providing ancillary care fell primarily on the shoulders of frontline researchers and programme staff. Dilemmas around responding to gender-based violence illustrated the limits of ‘referral to services’ as a solution for meeting ancillary care obligations in contexts with barriers to basic health and social services.ConclusionOur findings show important gaps in meeting ancillary care needs. Participants’ needs required social and economic support which frontline researchers and implementing partners were not able to meet, causing moral distress.

Highlights

One of the most persistent ethical challenges in research with participants living with complex health, social and economic needs is determining the scope of researchers’ obligations to respond and what care to provide
We describe the findings from a research ethics case study, linked with a study team evaluating a package of intervention services to prevent HIV infection in adolescent girls and young women (AGYW) living in a rural and poor setting of KwaZuluNatal, South Africa
We focus on the range of ancillary care needs that arose during the evaluation of the intervention

Summary

Introduction

One of the most persistent ethical challenges in research with participants living with complex health, social and economic needs is determining the scope of researchers’ obligations to respond and what care to provide. As Merritt and colleagues[2] note, a researcher’s responsibilities to facilitate ancillary care ‘through referral raise ethical issues’ (p.105), in resource-constrained settings.[3,4] A review of the institutional guidance available in 2010–2012 on ancillary care in low-resource settings, carried out by Krubiner et al.,[5] found that 23 institutions (half of those they studied) explicitly took a position on the responsibility of researchers to provide ancillary care; the other half recommended that ancillary care be provided through the local health care services. We describe the findings from a research ethics case study, linked with a team evaluating a package of intervention services to prevent HIV infection in adolescent girls and young women (AGYW) living in a rural and poor setting of KwaZulu-Natal, South Africa

Methods

Results

Discussion

Conclusion