Fabienne HEJOAKA EHESS – IRD/UMR 145 “HIV and associated diseases”

1. “The Child Went Back to the Village!” Rethinking HIV Positive Child Care and Treatment through Mobility and “Family Nomadism” in Burkina Faso Fabienne HEJOAKA EHESS – IRD/UMR 145 “HIV and associated diseases”

2. Introduction (1) • Care and treatment of HIV-positive children have been poorly addressed in terms of mobility. However, as children living with HIV are dependent on a third party for treatment and care, they are severely affected by care givers’ mobility which may jeopardize continuity of care and adherence to treatment. • In sub-Saharan Africa, children’s fosterage is a common practice. Child raising and education are not exclusively done by parents, but shared by many people. Though, in a context of widely studied structural family transformations and because of secrecy surrounding HIV, taking care of HIV positive children is complex and involves a large burden of care.

3. Introduction (2) • Based on the description of “family nomadism”, this communication aims to describe the diversity of the phenomenon and its consequences on HIV positive child care and pediatric HAART treatment. What is “family nomadism”?: • “Family nomadism” is characterized by either the caregivers' or the children’s mobility and the resultant movement of children between successive caregivers (particularly for orphans).

4. Methods • Ethnographic data were collected through a qualitative study conducted in Burkina Faso (West Africa ) between 2005 and 2008. • Participant observation and semi-structured interviews were conducted with • 49 children living with HIV (7 to 18 years of age) • 64 parents and their caregiver(s) • 15 healthcare workers and counselors • Approval of the National Ethics Committee in Burkina Faso Burkina Faso Bobo-Dioulasso Inhabitants : 15,746,232 (2009) HIV prevalence: 1,6 % (2007) HIV + children: 10 000 (2007)

5. Results

6. Family nomadism : 3 examples • Case 1: Fatoumata, [18-year old girl] had been used to taking care of her HIV positive twin brothers aged of 8 years old. As she got pregnant while unmarried, she had to leave the family home. Her younger sister became the substitute caregiver of their siblings, but she was not informed of their HIV status until, she accidently discovered her brothers’ status, as well as that of her parents. • Case 2 : Mamadou is a 8-year old boy. His mother was at an advanced stage of AIDS and without any support because of family common old conflicts. She returned to her ancestral village (in a rural zone, 150 km from Bobo-Dioulasso) for her last days. Her two sons went with her… Mamadou was on treatment and thus was ‘loss to follow’. • Case 3 : Marie is a 7-year old girl. After her mother’s death in Ivory Coast, Marie’s older sister went to Ivory Coast to attend their mother’s funeral and to make inheritance arrangements. But she stayed there, “abandoning” her young sister Marie who was staying with her old boy-friend, who was not aware of the girl’s HIV positive status. She found a new boy friend and never returned to Bobo-Dioulasso…

7. Family nomadism: a complex reality Causes of Parental mobility: • Health reasons • Professional engagements: trade, seasonal work … • Moral and social duties: caring for sick persons, attending funerals, participating into traditional ceremonies. Many of these activities are located in parent’s ancestral village • Personal reasons: marriage, remarriage, divorce, separation after family conflicts Causes of children’s mobility: • Consequence of caregivers' mobility • Parents’ death • Parents’ sickness and physical inability to take care of HIV positive children

8. Family nomadism: a complex reality 3 dimensions of “family nomadism”: - Relational dimension of mobility Children moved to live with a new caregiver. - Spatial dimension of mobility Local, national or transnational scales - Temporal dimension of mobility Duration: short versus long term mobility Frequency: one time versus recurring mobility Reversibility: transitory versus definitive mobility

9. Effects of family nomadism’s on children • Psychological impact of repeated losses and “abandonment” • Degradation of social relations • Lost to follow-up, poor adherence because of treatment interruption, disruption in psychological and social support • Children lack of care, face neglect or abandonment because of : • Caregivers’ awareness of the child’s HIV status • Caregiver’s “commitment” to take care of the child cannot be taken for granted but largely depends on previous caregiver’s relations with children’s parents (family solidarity is not systemic but is more a matter of reciprocity) • Some caregivers may be less committed as compared to biologic parents (feeling of responsibility, guilt)

10. Caregivers and family nomadism • The incorporation of HIV-positive children in a new household is a challenging process • The “work” of taking care of a HIV-positive child : • implies a high burden of health work • is a long learning process • financial cost of care Caregivers’ reluctance to care for HIV-positive children Caregivers may be reluctant into child care because of HIV/AIDS fatality and beliefs about that children will die soon; doubts about treatment’s efficacy, fear of courtesy stigma, and secrecy, denial, witchcraft accusations, expecting death of the child, fear of contagion.

11. Effect of family nomadism’s on healthcare workers In a context of shortage of human resources , “family nomadism” hinders healthcare work. • Lost to follow-up, poor adherence, treatment failure, which are particularly challenging in a context of lack of second-line pediatric regimen • Lack of resources to trace lost to follow-up children • Healthcare workers have to face uncertainties about substitute caregivers’ awareness or non awareness of the child HV status • Re-building of a new therapeutic alliance : - Child’s status may have to be disclosed to the substitute caregiver - Counseling and providing information about HIV, HAART, nutrition, etc.

12. Conclusion • HIV-positive childcare Programs need to adopt a dynamic perspective to address and manage the potential negative impacts of “family nomadism”. • Shifts from one caregiver to another are critical events and a periods of children’s high vulnerability requiring awareness and special attention from health workers • Importance of strengthening substitute caregivers’ awareness and skills as well as providing psychosocial support to them • Novel programs supporting children facing disruptive care remain an urgent need to assure the continuity of care and treatment

13. Acknowledgements • Special thank to children, adolescents , their parents and caregivers • Institutions of research : • - IRD/UMR 145 « HIV/AIDS associated diseases and EHESS • Funders : ANRS and SIDACTION • Partners : • - Pediatric service of CNHU SanonSouro - Burkina Faso • - OBCs : AED and RVS + • - SHADEI

14. Email : fabienne.hejoaka@ird.fr Contact : Fabienne Hejoaka