Care and secrecy: Being a mother of children living with HIV in Burkina Faso
Introduction
The choice of the slogan “Women, Girls, HIV and AIDS” as theme of World AIDS Day in 2004 exemplifies the political recognition of the feminisation of the epidemic in low-resource countries (UNAIDS, 2004) as well as gender mainstreaming into AIDS policy and programming (Kleintjes, Prince, Cloete, & Davids, 2005). Indeed, women account today for half of all the people living with HIV and nearly 60% of infection in sub-Saharan Africa (UNAIDS, 2008). HIV/AIDS also strikes women by significantly increasing the burden of care they shoulder. As caregiving is a social role shaped by gender, women are generally seen as “natural” caregivers. In most societies, it is taken for granted that mothers, wives, grandmothers, aunts and sisters have to care for those in need – and particularly for children. Thus, like other kinds of care, HIV/AIDS care is primarily provided by women (Global Coalition on Women and AIDS, 2004) and the elderly (Dayton and Ainsworth, 2004, Nyambedha et al., 2003, Ssengonzi, 2008).
Caregiving work refers to a range of services and activities including physical, medical, emotional, material and financial care. It operates at multiple levels such as health care system, community-based care programs and within domestic space. Within the home, the provision of care consists of domestic chores such as, in an African context: cooking, cleaning, carrying water and wood as well as taking care of children, the elderly, the disabled and sick people. In settings characterised by overburdened health care systems and shortages of health care workers (Van Damme et al., 2008, WHO, 2006), home care has become a central component of the response to the AIDS epidemic, hence shifting the caregiving work onto women, who constitute the majority of informal and unpaid caregivers. In recent years, there has been an increasing amount of literature on AIDS-related care, with particular focus on care for ailing adults (Campbell et al., 2008, Hamra et al., 2005, Nkosi et al., 2006) and foster care of orphaned children (Abebe and Aase, 2007, Heymann et al., 2007, Hosegood et al., 2007, Meintjes and Giese, 2006, Nyamukapa and Gregson, 2005). So far, however, there has been little discussion in social science about caring for children living with HIV with the exception of a few studies (Brouwer et al., 2000, O'Hare et al., 2005, Van Graan et al., 2007).
As Richter (2008) pointed out during a plenary session at the International AIDS 2008 conference held in Mexico, children have remained “small issues” for policymakers and scholars. This relative invisibility may be explained by different factors. Firstly, HIV-positive children have remained a blind spot in the care and treatment of the HIV infection for two decades in low-resource countries (Desclaux, 1997, Domek, 2006, Elenga et al., 2006). Furthermore, despite recently scaled-up treatment access programs, a large majority of the 2.1 million children living with HIV/AIDS needing antiretroviral treatment do not have access to it (WHO, UNAIDS, & UNICEF, 2008). Second, the complex reality of the impact of HIV/AIDS on both infected and affected children has often been undermined by the media as well as the academic emphasis on the so-called “orphan crisis” (Bicego et al., 2003, Foster et al., 2005, UNICEF et al., 2007). Finally, children and childhood have not been recognized as a significant area of study by sociologists and anthropologists for a long time, making Hirschfeld (2002) ironically wonder in an eponymous article “Why don't anthropologists like children?”. Even if in the last two or three decades the sociology and anthropology of childhood have gained increasing attention (James et al., 1998, James and Prout, 1997, Lallemand and Le Moal, 1981, Mayall, 2002, Qvortrup, 1994), there is still a dearth of scholarship examining children as social actors and exploring the sense that children make of their worlds.
Understanding the daily AIDS care provided by women to HIV-positive children also requires consideration of the stigmatization surrounding HIV/AIDS. AIDS-related stigma has received a particular concern in the literature (Castro and Farmer, 2005, Deacon et al., 2005, Mahajan et al., 2008, Parker and Aggleton, 2003, Stein, 2003) and research has stressed how stigma may impede access to and provision of care (Simbayi et al., 2007, Turan et al., 2008). HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with tension between the secrecy surrounding the disease and the openness required in providing care and receiving social support. Goffman's (1963) seminal work on social stigma provides an heuristic framework to explore care interactions shaped by secrecy. By distinguishing the discredited (those whose stigma is known) from the discreditable (those whose stigma can be hidden), Goffman highlighted how the problem of the discreditable is to manage information rather than the tensions generated during social contacts. It is in this context of the daily management of the secret that the care given by mothers to their infected children is embedded and must be understood.
The purpose of this paper was to gain understanding of women mothering and caring for children and adolescents living with HIV in resource-limited countries. Based on ethnographic material gathered in Burkina Faso, this article considers mothers' social experience of AIDS care and health work provided in a context of poverty, where the access of the populations to health care is precarious and inequitable (Nikièma et al., 2008, Ridde, 2008). As well, as stigma surrounds HIV/AIDS care, this article explores how tensions between disclosure and concealment of the disease shape caregiving work and may hinder care by limiting potential social support.
Section snippets
Study location
This study was conducted in Bobo-Dioulasso, the second largest city in Burkina Faso, with approximately 400,000 inhabitants in 2006. With an essentially rural (72.7% of the population) and agricultural population, Burkina Faso holds the penultimate position (176th) in the ranking of the Human Development Index (UNPD, 2007). Since the declaration of the first case of AIDS in 1986, Burkina Faso has paid a high price for the epidemic. In recent years, the national prevalence rate among adults aged
Data collection
The analysis presented on women's mothering HIV-positive children is part of a doctoral thesis in social anthropology examining the experience of the disease and its treatment among HIV-infected children and adolescents in Burkina Faso. The field study and the collection of data were carried out between November 2005 and December 2006 in Bobo-Dioulasso. The research was conducted in the framework of a partnership with the paediatric department of the Centre Hospitalier National Sanou Souro in
Everyday life constraints in child care and treatment
Notifying others of a child's illness involves a re-organization of daily life and an evolution of social relations between the mother and the infected child. The necessity of routinely taking medicines is one of the most common constraints faced by women mothering children with HIV. Because the effectiveness of antiretroviral drugs is dependent on the regularity of the treatment, precise hours are specified to ensure patients' adherence. The times for medication have thus become an essential
Discussion
This qualitative study describes the caregiving work provided by women mothering children and adolescents living with HIV in Burkina Faso. Far beyond the essentialist approach of women's vulnerability largely conveyed by contemporary international discourse, our results highlight women's agency in coping with both their child's illness and the related home care. In daily care mothers face many great challenges ranging from the routine of pills-taking to disturbing face-to-faces with children
Acknowledgements
Our heartfelt thanks are due to the children, adolescents, parents, health and community workers who co-operated and participated in the research process. We also wish to thank our supervisors Doris Bonnet (IRD/EHESS - UMR 196) and Dr Philippe Msellati (IRD - UMR 145), as well as Abdramane Berthe and Issika Bamba (SHADEI - Burkina Faso) for their support during fieldwork. We also extend thanks to the community-based organizations AED and REVS+ as well as Pr Aboubacar Nacro and the staff of the
References (80)
- et al.
Children, AIDS and the politics of orphan care in Ethiopia: the extended family revisited
Social Science & Medicine
(2007) - et al.
Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory
Social Science & Medicine
(1995) - et al.
Dimensions of the emerging orphan crisis in sub-Saharan Africa
Social Science & Medicine
(2003) - et al.
Supporting people with AIDS and their carers in rural South Africa: possibilities and challenges
Health and Place
(2008) - et al.
The elderly and AIDS: coping with the impact of adult death in Tanzania
Social Science & Medicine
(2004) Social consequences of antiretroviral therapy: preparing for the unexpected futures of HIV-positive children
The Lancet
(2006)Fosterage patterns in the age of AIDS: continuity and change
Social Science & Medicine
(2004)- et al.
Men's involvement in the South African family: engendering change in the AIDS era
Social Science & Medicine
(2006) - et al.
Women bargaining to seek healthcare: norms, domestic practices, and implications in rural Burkina Faso
World Development
(2008) - et al.
Extended family's and women's roles in safeguarding orphans' education in AIDS-afflicted rural Zimbabwe
Social Science & Medicine
(2005)
HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action
Social Science & Medicine
“The problem of the worst-off is dealt with after all other issues”: the equity and health policy implementation gap in Burkina Faso
Social Science & Medicine
Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa
Social Science & Medicine
Stigma, fatigue and social breakdown: exploring the impacts of HIV/AIDS on patient and carer well-being in the Caprivi Region, Namibia
Social Science & Medicine
Scaling-up antiretroviral treatment in Southern African countries with human resource shortage: how will health systems adapt?
Social Science & Medicine
Qualitative data analysis with NVIVO
“We Grandmothers Know Plenty”: breastfeeding, complementary feeding and the multifaceted role of grandmothers in Malawi
Social Science & Medicine
Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda
AIDS and Behavior
Du Soin au Rite de l'Enfance
Psychosocial and economic aspects of HIV/AIDS and counselling of caretakers of HIV-infected children in Uganda
AIDS Care
Chronic illness as biographical disruption
Sociology of Health and Illness
Understanding and addressing AIDS-related stigma: from anthropological theory to clinical practice in Haiti
American Journal of Public Health
Research with children
Le travail domestique de santé, analyse sociologique
Nouvelles questions féministes
Understanding HIV/AIDS stigma: A theoretical and methodological analysis
L'épidémie invisible: Anthropologie d'un système médical à l'épreuve du SIDA chez l'enfant à Bobo Dioulasso, Burkina Faso
La tache aveugle de l'infection par le VIH en Afrique: la prise en d'un programme pilote, le “Programme enfant Yopougon”
Knowing children: Participant observation with children
A generation at risk: The global impact of HIV/AIDS on orphans and vulnerable children
In a different voice
Stigma: Notes on the management of spoiled identity
The relationship between expressed HIV/AIDS-related stigma and beliefs and knowledge about care and support of people living with AIDS in families caring for HIV-infected children in Kenya
AIDS Care
Relationship between expressed HIV/AIDS-related stigma and HIV-beliefs/knowledge and behaviour in families of HIV infected children in Kenya
Tropical Medicine & International Health
From access to adherence: The challenges of antiretroviral treatment. Studies from Botswana, Tanzania and Uganda
Disclosures of maternal HIV infection to seronegative children: a literature review
Journal of Social and Personal Relationships
Extended family caring for children orphaned by AIDS: balancing essential work and caregiving in a high HIV prevalence nations
AIDS Care
Why don't anthropologists like children?
American Anthropologist
The effects of high HIV prevalence on orphanhood and living arrangements of children in Malawi, Tanzania, and South Africa
Population Studies – A Journal of Demography
Cited by (76)
Treatment success or failure in children and adolescents born with HIV in rural Senegal: An anthropological perspective
2023, Social Science and Medicine“There was no love there”: Intergenerational HIV disclosure, and late presentation for antiretroviral therapy in Northern Malawi
2018, Social Science and MedicineUsing adult care visits to diagnose HIV infection in children, Burkina Faso
2024, Bulletin of the World Health OrganizationSocio-Cultural Influencers of Disclosure of HIV Status to Children on Antiretroviral Therapy in the Masaka Region, Uganda: A Qualitative Study
2023, Journal of the International Association of Providers of AIDS CareIntroduction: Cryptopolitics and digital media
2023, Cryptopolitics: Exposure, Concealment, and Digital MediaParenting in Adversity: Effects of Older Caregivers, Biological Carers and Troubled Carers on Child Outcomes in High HIV-Affected Communities
2023, Journal of Cross-Cultural Gerontology