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

Social Science and Medicine

Volumn 69, Issue 6, 2009, Pages 869-876

  Hejoaka, Fabienne ^a,b  

^a ÉCOLE DES HAUTES ÉTUDES EN SCIENCES SOCIALES   (France)

^b UNIVERSITÉ DE MONTPELLIER   (France)

Author keywords

Burkina Faso; Caregiving; Children; HIV AIDS; Mother child relationship; Mothers; Secrecy

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; CHILD CARE; COMMUNITY ORGANIZATION; HUMAN IMMUNODEFICIENCY VIRUS; MATERNAL CARE; ORPHAN; QUESTIONNAIRE SURVEY; VULNERABILITY; WOMENS STATUS;

ACQUIRED IMMUNE DEFICIENCY SYNDROME; ADOLESCENT; ADULT; ARTICLE; BURKINA FASO; CAREGIVER BURDEN; CHILD; CHILD CARE; CLINICAL ARTICLE; FAMILY LIFE; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; MOTHER CHILD RELATION; PARENTAL ATTITUDE; SCHOOL CHILD; SOCIAL SUPPORT; STIGMA;

ADOLESCENT; ADULT; AGED; BURKINA FASO; CAREGIVERS; CHILD; CONFIDENTIALITY; COST OF ILLNESS; FEAR; FEMALE; HIV INFECTIONS; HUMANS; INTERVIEWS AS TOPIC; MATERNAL BEHAVIOR; MIDDLE AGED; MOTHER-CHILD RELATIONS; SOCIAL ISOLATION; SOCIAL SUPPORT; STEREOTYPING; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

AFRICA; BURKINA FASO; SUB-SAHARAN AFRICA; WEST AFRICA;

EID: 69449087458     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2009.05.041     Document Type: Article

References (80)

1. Abebe T., and Aase A. Children, AIDS and the politics of orphan care in Ethiopia: the extended family revisited. Social Science & Medicine 64 10 (2007) 2058-2069
2. Alonzo A.A., and Reynolds N.R. Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Social Science & Medicine 41 3 (1995) 303-315
3. Bazeley P. Qualitative data analysis with NVIVO (2007), Sage, London
4. Bezner Kerr R., Dakishoni L., Shumba L., Msachi R., and Chirwa M. "We Grandmothers Know Plenty": breastfeeding, complementary feeding and the multifaceted role of grandmothers in Malawi. Social Science & Medicine (2007)
5. Bicego G., Rutstein S., and Johnson K. Dimensions of the emerging orphan crisis in sub-Saharan Africa. Social Science & Medicine 56 6 (2003) 1235-1247
6. Bikaako-Kajura W., Luyirika E., Purcell D.W., Downing J., Kaharuza F., Mermin J., et al. Disclosure of HIV status and adherence to daily drug regimens among HIV-infected children in Uganda. AIDS and Behavior 10 4 Suppl. (2006) S85-S93
7. Bonnet D., and Pourchez L. Du Soin au Rite de l'Enfance (2007), Erès; IRD, Paris
8. Brouwer C.N., Lok C.L., Wolffers I., and Sebagalls S. Psychosocial and economic aspects of HIV/AIDS and counselling of caretakers of HIV-infected children in Uganda. AIDS Care 12 5 (2000) 535-540
9. Bury M. Chronic illness as biographical disruption. Sociology of Health and Illness 4 2 (1982) 167-182
10. Campbell C., Nair Y., Maimane S., and Sibiya Z. Supporting people with AIDS and their carers in rural South Africa: possibilities and challenges. Health and Place 14 3 (2008) 507-518
11. Castro A., and Farmer P. Understanding and addressing AIDS-related stigma: from anthropological theory to clinical practice in Haiti. American Journal of Public Health 95 (2005) 53-59
12. Christensen P.M., and James A. Research with children (2000), Falmer Press, New York
13. Cresson G., and Falquet J. Le travail domestique de santé, analyse sociologique. Nouvelles questions féministes 17 4 (1996) 107-111
14. Dayton J., and Ainsworth M. The elderly and AIDS: coping with the impact of adult death in Tanzania. Social Science & Medicine 59 10 (2004) 2161-2172
15. Deacon H., Stephney I., and Prosalendis S. Understanding HIV/AIDS stigma: A theoretical and methodological analysis (2005), HSRC Press
16. Desclaux A. L'épidémie invisible: Anthropologie d'un système médical à l'épreuve du SIDA chez l'enfant à Bobo Dioulasso, Burkina Faso (1997), Presses universitaires du Septentrion, Lille
17. Domek G.J. Social consequences of antiretroviral therapy: preparing for the unexpected futures of HIV-positive children. The Lancet 367 9519 (2006) 1367-1369
18. Elenga N., Fassinou P., Dossou R., Dago A., Akribi H., and Msellati P. La tache aveugle de l'infection par le VIH en Afrique: la prise en d'un programme pilote, le "Programme enfant Yopougon". In: Academia (Ed). Santé de la reproduction et fécondité dans les pays du Sud. Nouveaux contextes et nouveaux comportements (2006), Academia, Bruxelles 332-359
19. Fine G.A., and Sandstrom K. Knowing children: Participant observation with children (1988), Sage, Newbury Park, CA
20. Foster G., Levine C., and Williamson J. A generation at risk: The global impact of HIV/AIDS on orphans and vulnerable children (2005), Cambridge University Press
21. Gilligan C. In a different voice (1982), Harvard University Press, Cambridge, MA
22. Global Coalition on Women and AIDS. (2004). Background brief series: Care, women and AIDS. Available from: http://data.unaids.org/GCWA/GCWA_BG_Care_en.pdf. Accessed 6.10.05.
23. Goffman E. Stigma: Notes on the management of spoiled identity. 1986 ed. (1963), Simon and Schuster
24. Hamra M., Ross M.W., Karuri K., Orrs M., and D'Agostino A. 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 17 7 (2005) 911-922
25. Hamra M., Ross M.W., Orrs M., and D'Agostino A. 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 11 4 (2006) 513-527
26. Hardon A., Davey S., Gerrits T., Hodgkin C., Irunde H., Kgatlwane J., et al. From access to adherence: The challenges of antiretroviral treatment. Studies from Botswana, Tanzania and Uganda (2006), World Health Organisation, Genève
27. Hawk S.T. Disclosures of maternal HIV infection to seronegative children: a literature review. Journal of Social and Personal Relationships 24 5 (2007) 657-673
28. Hejoaka, F. (4 August 2008). HIV Disclosure to children in low-resource countries: A Forgotten issue on the international AIDS policy agenda. Oral Abstract Session "Children and Youth Facing HIV/AIDS". Paper presented at the AIDS 2008-XVII International AIDS Conference, Mexico.
29. Heymann J., Earle A., Rajaraman D., Miller C., and Bogen K. Extended family caring for children orphaned by AIDS: balancing essential work and caregiving in a high HIV prevalence nations. AIDS Care 19 3 (2007) 337-345
30. Hirschfeld L.A. Why don't anthropologists like children?. American Anthropologist 104 2 (2002) 611-627
31. Hosegood V., Floyd S., Marston M., Hill C., McGrath N., Isingo R., et al. 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 61 3 (2007) 327-336
32. Institut National de la Statistique et de la Démographie & ORC Macro(INSD & ORC Macro). Enquête démographique et santé 2003 (2004), ISND & ORC Macro, Calverton, Maryland, USA
33. James A., Jenks C., and Prout A. Theorizing childhood (1998), Polity Press, Cambridge p. 247
34. James A., and Prout A. Constructing and reconstructing childhood: Contemporary issues in the sociological study of childhood (1997), Falmer Pr
35. Kipp W. Family caregivers in rural Uganda: the hidden reality. Health Care for Women International 28 10 (2007) 856-871
36. Kipp W., Tindyebwa D., Karamagi E., and Rubaale T. Family caregiving to AIDS patients: the role of gender in caregiver burden in Uganda. Journal of International Women's Studies 7 (2006) 1
37. In: Kleintjes S., Prince B., Cloete A., and Davids A. (Eds). Gender mainstreaming in HIV/AIDS. Seminar proceedings Vol. 165 (2005), HSCR Press, Cape-Town
38. Kouyoumdjian F.G., Meyers T., and Mtshizana S. Barriers to disclosure to children with HIV. Journal of Tropical Pediatrics 51 5 (2005) 285-287
39. Lallemand S., and Le Moal G. Un petit sujet. Journal de la Société des Africanistes Paris 51 1-2 (1981) 5-21
40. Madhavan S. Fosterage patterns in the age of AIDS: continuity and change. Social Science & Medicine 58 7 (2004) 1443-1454
41. Mahajan A.P., Sayles J.N., Patel V.A., Remien R.H., Sawires S.R., Ortiz D.J., et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS 22 (2008) S57
42. Makoae M.G., and Jubber K. Confidentiality or continuity? Family caregivers' experiences with care for HIV/AIDS patients in home-based care in Lesotho. Journal of Social Aspects of HIV/AIDS 5 1 (2008) 36-46
43. Mayall B. Towards a sociology for childhood: Thinking from children's lives (2002), Open University Press, Philadelphia, PA
44. Meintjes H., and Giese S. Spinning the epidemic: the making of mythologies of orphanhood in the context of AIDS. Childhood 13 3 (2006) 407-430
45. Montgomery C.M., Hosegood V., Busza J., and Timæus I.M. Men's involvement in the South African family: engendering change in the AIDS era. Social Science & Medicine 62 10 (2006) 2411-2419
46. Ndinda C., Chimbwete C., McGrath N., Pool R., and Group M. Community attitudes towards individuals living with HIV in rural KwaZulu-Natal, South Africa. AIDS Care 19 1 (2007) 92-101
47. Nikièma B., Haddad S., and Potvin L. Women bargaining to seek healthcare: norms, domestic practices, and implications in rural Burkina Faso. World Development 36 4 (2008) 608-624
48. Nkosi T.M., Kipp W., Laing L., and Mill J. Family caregiving for AIDS patients in the Democratic Republic of Congo. Healthcare Quarterly 9 3 (2006) 94-101
49. Nyambedha E.O., Wandibba S., and Aagaard-Hansen J. "Retirement lost" - the new role of the elderly as caretakers for orphans in Western Kenya. Journal of Cross-Cultural Gerontology 18 1 (2003) 33-52
50. Nyamukapa C., and Gregson S. Extended family's and women's roles in safeguarding orphans' education in AIDS-afflicted rural Zimbabwe. Social Science & Medicine 60 10 (2005) 2155-2167
51. O'Hare B.A.M., Venables J., Nalubeg J.F., Nakakeeto M., Kibirige M., and Southall D.P. Home-based care for orphaned children infected with HIV/AIDS in Uganda. AIDS Care 17 4 (2005) 443-450
52. In: Paperman P., and Laugier S. (Eds). Le souci des autres. Ethique et politique du Care (2004), EHESS, Paris
53. Parker R., and Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Social Science & Medicine 57 1 (2003) 13-24
54. Punch S. Research with children: the same or different from research with adults?. Childhood 9 3 (2002) 321
55. Qvortrup J. Childhood matters: an introduction. Childhood Matters: Social Theory, Practice and Politics (1994) 1-23
56. Radstake M. Secrecy and ambiguity: Home care for people living with HIV/AIDS in Ghana (2000), African Studies Centre, Leiden
57. Richter, L. (2008). No small issue: Children and families. Universal Action Now. Plenary Presentation at the XVII International AIDS Conference "Universal Action Now", Mexico City, Mexico, 6 August 2008, Online Outreach Paper 3, Bernard van Leer Foundation, The Hague, The Netherlands. Available from http://www.bernardvanleer.org/publication_store/publication_store_public ations/no_small_issue_children_ and_families_universal_action_now_/file.
58. Ridde V. "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 66 6 (2008) 1368-1378
59. Rwemisisi J., Wolff B., Coutinho A., Grosskurth H., and Whitworth J. 'What if they ask how I got it?' Dilemmas of disclosing parental HIV status and testing children for HIV in Uganda. Health Policy and Planning 23 1 (2008) 36-42
60. Simbayi L.C., Kalichman S., Strebel A., Cloete A., Henda N., and Mqeketo A. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Social Science & Medicine 64 9 (2007) 1823-1831
61. Ssengonzi R. The impact of HIV/AIDS on the living arrangements and well-being of elderly caregivers in rural Uganda. AIDS Care 21 3 (2008) 309-314
62. Stein J. HIV/AIDS stigma: the latest dirty secret. African Journal of AIDS Research 2 2 (2003) 95-101
63. Thomas F. 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 63 12 (2006) 3174-3187
64. Tompkins T. Disclosure of maternal HIV status to children: to tell or not to tell. That is the question. Journal of Child and Family Studies 16 6 (2007)
65. Tronto J.C. Moral boundaries: A political argument for an ethic of care (1993), Routledge
66. Turan J.M., Miller S., Bukusi E.A., Sande J., and Cohen C.R. HIV/AIDS and maternity care in Kenya: how fears of stigma and discrimination affect uptake and provision of labor and delivery services. AIDS Care 20 8 (2008) 938-945
67. UNAIDS. Women and HIV/AIDS: Confronting the crisis (2004), UNAIDS, UNFPA, UNIFEM, Geneva
68. UNAIDS. AIDS epidemic update, December 2007 (2007), UNAIDS, Geneva
69. UNAIDS. Report on the global HIV/AIDS epidemic 2008 (2008), UNAIDS, Geneva
70. UNICEF, UNAIDS, and WHO. Children and AIDS: A stocktaking report. Actions and progress during the first year of Unite for Children, Unite against AIDS (2007), UNICEF
71. UNPD. Human Development Report 2007/2008 (2007), UNPD
72. Upton R.L. "Women have no tribe": connecting carework, gender, and migration in an Era of HIV/AIDS in Botswana. Gender and Society 17 2 (2003) 314-322
73. Van Damme W., Kober K., and Kegels G. Scaling-up antiretroviral treatment in Southern African countries with human resource shortage: how will health systems adapt?. Social Science & Medicine 66 10 (2008) 2108-2121
74. Van Graan A., Van der Walt E., and Watson M. Community-based care of children with HIV in Potchefstroom, South Africa. African Journal of AIDS Research 6 3 (2007) 305-313
75. Vaz L., Corneli A., Dulyx J., Rennie S., Omba S., Kitetele F., et al. The process of HIV status disclosure to HIV-positive youth in Kinshasa, Democratic Republic of the Congo. AIDS Care 20 7 (2008) 842-852
76. WHO. Treat, train, retain. The AIDS and the healthcare workforce plan. Report on the consultation on AIDS and human resources for health (2006), WHO, Geneva
77. WHO, UNAIDS, and UNICEF. Toward universal access. Scaling up priority HIV/AIDS interventions in the health sector. Progress report 2008 (2008), WHO, Geneva
78. Wiener L., Mellins C.A., Marhefka S., and Battles H.B. Disclosure of an HIV diagnosis to children: history, current research, and future directions. Journal of Developmental and Behavioral Pediatrics 28 2 (2007)
79. Wong V., Macleod I., Gilks C., Higgins D., and Crowley S. The lost children of universal access - issues in scaling-up HIV testing and counselling. Vulnerable Children and Youth Studies 1 1 (2006) 44-55
80. Zimet G.D., Mays R.M., Sturm L.A., Ravert A.A., Perkins S.M., and Juliar B.E. Parental attitudes about sexually transmitted infection vaccination for their adolescent children. Archives of Pediatrics and Adolescent Medicine 159 2 (2005) 132-137