Suffering, silence, and status: the importance and challenges of qualitative research on AIDS orphanhood

Abstract

Drawing on ethnographic fieldwork with Ugandan children affected by AIDS conducted from 2007 to 2014, this report summarizes findings of a study conducted to better understand the ways children experience orphanhood at the hands of HIV/AIDS. Three crucial, interrelated concepts emerged: suffering, silence, and status. This study explored the social context of AIDS orphanhood as both a cause of social suffering and a context for the suffering of individual children. Though problematic, silence about suffering is often due to continuing HIV/AIDS stigma in Uganda that makes one's status unspeakable, in spite of the adverse effect this has on the social order and efforts to eradicate the disease. Approaching silence as a distinct form of communication rather than an absence of it, the report considers silence's intergenerational functions, its detriments, and its consolations, in the context of HIV/AIDS-affected children's lives. In doing so, it also highlights the need for more child-centered, qualitative research on AIDS' psychosocial effects on children, despite the challenges of doing such research.

Keywords:

• suffering
• silence
• HIV status
• children affected by AIDS
• qualitative research

Acknowledgments

The author is grateful to Fulbright Africa Regional Research Program for financial support of this project [grant number 48411016] and to Faridah Ddamulira for providing research assistance and translation.