The rebellious man: Next-of-kin accounts of the death of a male relative on antiretroviral therapy in sub-Saharan Africa

ABSTRACT

The HIV response is hampered by many obstacles to progression along the HIV care cascade, with men, in particular, experiencing different forms of disruption. One group of men, whose stories remain untold, are those who have succumbed to HIV-related illness. In this paper, we explore how next-of-kin account for the death of a male relative. We conducted 26 qualitative after-death interviews with family members of male PLHIV who had recently died from HIV in health and demographic surveillance sites in Malawi, Tanzania, Kenya, Uganda, Zimbabwe and South Africa. The next-of-kin expressed frustration about the defiance of their male relative to disclose his HIV status and ask for support, and attributed this to shame, fear and a lack of self-acceptance of HIV diagnosis. Next-of-kin painted a picture of their male relative as rebellious. Some claimed that their deceased relative deliberately ignored instructions received by the health worker. Others described their male relatives as unable to maintain caring relationships that would avail day-to-day treatment partners, and give purpose to their lives. Through these accounts, next-of-kin vocalised the perceived rebellious behaviour of these men, and in the process of doing so neutralised their responsibility for the premature death of their relative.

KEYWORDS:

• Antiretroviral treatment
• HIV
• illness-narratives
• social autopsy
• sub-Saharan Africa

Acknowledgments

We would like to thank all the participants and fieldworkers who contributed their time and effort to the study. We would also like to acknowledge the support of ALPHA representatives at each HDSS who facilitated the implementation of the fieldwork, and many other colleagues within the ALPHA Network who made helpful suggestions throughout the design and conduct of the research. We would also like to express our heartfelt gratitude to Prof Basia Zaba, a dear friend and valued colleague, who conceived the ‘Bottlenecks study’, and who supported us all to come together and bring it to its fruition. She passed away after a long battle with cancer during the writing of this paper. May she rest in peace.

Disclosure statement

No potential conflict of interest was reported by the authors.

Data availability

The data that support the findings of this study are available from Dr Alison Wringe, upon reasonable request.

ORCID

Morten Skovdal http://orcid.org/0000-0002-2068-1814

Janet Seeley http://orcid.org/0000-0002-0583-5272

Joyce Wamoyi http://orcid.org/0000-0002-2956-8666

Mosa Moshabela http://orcid.org/0000-0002-9438-7095

Alison Wringe http://orcid.org/0000-0001-6939-3461

Simon Gregson http://orcid.org/0000-0003-2707-0714

Basia Zaba http://orcid.org/0000-0003-2449-0983

Additional information

Funding

The ‘Bottlenecks study’ was funded by the Bill and Melinda Gates Foundation (OPP1082114). This paper was also made possible with the support of The Wellcome Trust (085477/Z/08/Z). A.W. is funded by a Population Health Scientist award, jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement and is also part of the EDCTP2 programme supported by the European Union. Research undertaken in Kisesa reported in this publication was supported by the National Institute Of Allergy And Infectious Diseases (NIAID), Eunice Kennedy Shriver National Institute Of Child Health & Human Development (NICHD), National Institute On Drug Abuse (NIDA), National Cancer Institute (NCI), and the National Institute of Mental Health (NIMH), in accordance with the regulatory requirements of the National Institutes of Health under Award Number U01AI069911East Africa IeDEA Consortium.