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Care and secrecy: Being a mother of children living with HIV in Burkina Faso

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  • Hejoaka, Fabienne

Abstract

Home care has become a central component of the response to the HIV/AIDS epidemic, displacing caregiving work onto women. While increasing interest has been paid to HIV/AIDS care with a focus on ailing adults and orphan foster care, the issue of caring for children living with HIV has received little attention in the social sciences. Based on ethnographic material gathered in Burkina Faso between November 2005 and December 2006, the aim of this paper was to gain understanding of women who mother and care for children living with HIV in resource-limited countries. The study involved participant observation in community-based organizations in Burkina Faso and semi-structured interviews with 20 women mothering HIV-positive children as well as 15 children infected with HIV, aged between 8 and 18 years. In daily care mothers face many great challenges, ranging from the routine of pill-taking to disturbing discussions with children asking questions about their health or treatment. The results also show how HIV/AIDS-related stigma adds an additional layer to the burden of care, compelling mothers to deal with the tension between secrecy surrounding the disease and the openness required in providing care and receiving social support. As mothers live in fear of disclosure, they have to develop concealment strategies around children's treatment and the nature of the disease. Conversely, some mothers may share their secret with kin members, close relatives or their children to gain social support. As HIV/AIDS care is shaped by secrecy, these findings shed light on mothers' isolation in child care within a context of changing patterns of family bonds and lack of formal psychosocial support addressing child-related issues. Finally, women's engagement in child care invites us to look beyond the essentialist approach of women's vulnerability conveyed by international discourse to characterise the situation of women facing the HIV/AIDS impact.

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  • Hejoaka, Fabienne, 2009. "Care and secrecy: Being a mother of children living with HIV in Burkina Faso," Social Science & Medicine, Elsevier, vol. 69(6), pages 869-876, September.
  • Handle: RePEc:eee:socmed:v:69:y:2009:i:6:p:869-876
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    1. Nikièma, Béatrice & Haddad, Slim & Potvin, Louise, 2008. "Women Bargaining to Seek Healthcare: Norms, Domestic Practices, and Implications in Rural Burkina Faso," World Development, Elsevier, vol. 36(4), pages 608-624, April.
    2. Thomas, Felicity, 2006. "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, Elsevier, vol. 63(12), pages 3174-3187, December.
    3. Alonzo, Angelo A. & Reynolds, Nancy R., 1995. "Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory," Social Science & Medicine, Elsevier, vol. 41(3), pages 303-315, August.
    4. Dayton, Julia & Ainsworth, Martha, 2004. "The elderly and AIDS: Coping with the impact of adult death in Tanzania," Social Science & Medicine, Elsevier, vol. 59(10), pages 2161-2172, November.
    5. Van Damme, Wim & Kober, Katharina & Kegels, Guy, 2008. "Scaling-up antiretroviral treatment in Southern African countries with human resource shortage: How will health systems adapt?," Social Science & Medicine, Elsevier, vol. 66(10), pages 2108-2121, May.
    6. Nyamukapa, Constance & Gregson, Simon, 2005. "Extended family's and women's roles in safeguarding orphans' education in AIDS-afflicted rural Zimbabwe," Social Science & Medicine, Elsevier, vol. 60(10), pages 2155-2167, May.
    7. Castro, A. & Farmer, P., 2005. "Understanding and addressing AIDS-related stigma: From anthropological theory to clinical practice in Haiti," American Journal of Public Health, American Public Health Association, vol. 95(1), pages 53-59.
    8. Simbayi, Leickness C. & Kalichman, Seth & Strebel, Anna & Cloete, Allanise & Henda, Nomvo & Mqeketo, Ayanda, 2007. "Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa," Social Science & Medicine, Elsevier, vol. 64(9), pages 1823-1831, May.
    9. Bicego, George & Rutstein, Shea & Johnson, Kiersten, 2003. "Dimensions of the emerging orphan crisis in sub-Saharan Africa," Social Science & Medicine, Elsevier, vol. 56(6), pages 1235-1247, March.
    10. Abebe, Tatek & Aase, Asbjorn, 2007. "Children, AIDS and the politics of orphan care in Ethiopia: The extended family revisited," Social Science & Medicine, Elsevier, vol. 64(10), pages 2058-2069, May.
    11. Ridde, Valéry, 2008. ""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, Elsevier, vol. 66(6), pages 1368-1378, March.
    12. Parker, Richard & Aggleton, Peter, 2003. "HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action," Social Science & Medicine, Elsevier, vol. 57(1), pages 13-24, July.
    13. Madhavan, Sangeetha, 2004. "Fosterage patterns in the age of AIDS: continuity and change," Social Science & Medicine, Elsevier, vol. 58(7), pages 1443-1454, April.
    14. Montgomery, Catherine M. & Hosegood, Victoria & Busza, Joanna & Timæus, Ian M., 2006. "Men's involvement in the South African family: Engendering change in the AIDS era," Social Science & Medicine, Elsevier, vol. 62(10), pages 2411-2419, May.
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    2. Winskell, Kate & Hill, Elizabeth & Obyerodhyambo, Oby, 2011. "Comparing HIV-related symbolic stigma in six African countries: Social representations in young people’s narratives," Social Science & Medicine, Elsevier, vol. 73(8), pages 1257-1265.
    3. Class, Deena M., 2014. "Effects of HIV prevention messages on treatment-seeking and adherence for HIV-infected children in Maputo, Mozambique: A qualitative study," Children and Youth Services Review, Elsevier, vol. 45(C), pages 64-73.
    4. Taverne, Bernard & Laborde-Balen, Gabrièle & Sow, Khoudia & Ndiaye, Ndeye Bineta & Diop, Karim, 2023. "Treatment success or failure in children and adolescents born with HIV in rural Senegal: An anthropological perspective," Social Science & Medicine, Elsevier, vol. 317(C).
    5. Campbell, Catherine & Skovdal, Morten & Mupambireyi, Zivai & Gregson, Simon, 2010. "Exploring children's stigmatisation of AIDS-affected children in Zimbabwe through drawings and stories," Social Science & Medicine, Elsevier, vol. 71(5), pages 975-985, September.

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