Children in the Shadow of AIDS: Studies of Vulnerable Children and Orphans in Three Provinces in South Africa

1. Children in the Shadow of AIDS: Studies of Vulnerable Childrenand Orphans in Three Provinces in South Africa Michelle Adato, Suneetha Kadiyala, Terence Roopnaraine, Patricia Biermayr-Jenzano and Amy Norman Research team members: Mickey Chopra, Lungiswa Tsolekile, Stuart Gillespie, Makhosazana Dlalisa,Themba Mohole, Themba Mpaza, KIDS 3 team

2. 2/3rd live in sub-Saharan Africa 1/3rd in southern Africa UNAIDS 2006 Page 2

3. Youth (15-24 years) and HIV • Of the 1 billion youth 10 million are HIV positive Page 3

4. HIV/AIDS and Children in South Africa • Life expectancy 48 years • HIV estimates • Adults 5.5 mil (18.8%) • Women attending antenatal clinics (15-4 yrs) 22 % • Orphans 2.2 mil (13%) . 1.2 due to AIDS 2.7 by 2016 Page 4

5. Study Motivation • HIV +ve parents/caregivers, children face different challenges along the continuum of morbidity, mortality and orphanhood. • Understanding of the trajectory of experiences is largely missing from current research and policy perspectives. Page 5

6. Objectives of the Study Filling in knowledge gaps on experiences and conditions of: • HIV +ve parents/caregivers and their children-- vulnerable to becoming orphans • Western Cape (15%): Mbekweni township (urban) • Eastern Cape (28%) : Umzimkhulu (rural) 2. Children already orphaned and caregivers of orphans • KZN (37.5%): six cluster clusters (urban and rural) Shedding light on interventions to support them at different stages Page 6

7. Methods Larger part of two longitunal studies • WC and EC (PMTCT evaluation study)-----Vulnerable children • KZN (KIDS)---orphanhood Data collection methods • In-depth household interviews • 20HHs from WC and EC • 18 HH from KZN • Key informant interviews • Triangulated with quantitative data (survey of 1428 HHs in KZN, incl 207 foster households) Limitations • Two different data sets • Children not interviewed Page 7

8. Mobility and Inter-Household Links Before Orphanhood Neliswa has two daughters--7 and 2 years old. The father left when the child was only 8 months old. The father of the 2-year old is not supportive although he is supported by a Disability Grant because he is sick with TB. Her 7-year old child lives in the Eastern Cape with her aunt. She sent her child away because she couldn’t afford to keep her. It was better to send away her eldest child because she has more needs and it is less expensive to keep her younger child. • Fathers absent from all households (one exception) • 1/2 died due to AIDS; 1/2 living elsewhere due to discord • Mothers moved to matrilineal homes or sent children to matrilineal relatives; Fostering in orphans due to AIDS also common • Circumstances of households require children to accustom themselves to relatively fluid living arrangements even before orphanhood . Page 8

9. Experiences of Disclosure to Children • Disclosure is a process—took a minimum of 1 yr • Confusion over appropriate age for disclosure • more likely to disclose to children who are older • ? Favoring girls • Non-residence of children complicated matters • Counseling and peersupport key factors in aiding the mothers in the disclosure process • Overwhelming desire to access counseling to obtain skills to disclose and negotiate • Where mothers disclosed, children have become effective agents of response Page 9

10. Children as Caregivers: Care, Support, and Assistance in Treatment In addition to the routine domestic chores • Heightened importance of girls in care giving to younger siblings • Care giving and emotional support to HIV + mothers “The fact that my children are handling my [HIV] status well makes it easier for me to deal with stigma” • Perceived support from family members shown to positively influences health outcomes among the HIV positive • Helping their mothers follow treatment regimens • Implications for adherence and drug resistance • Mothers prioritize children’s education over domestic chores and economic activity Page 10

11. Process of Planning for Children’s Future Welfare • Plans ranged from organizing future care giving arrangements to preparing wills for inheritance • Making future care giving arrangements When she was especially sick she spoke to her sister about caring for her children when she passes away and her sister agreed. The three youngest children will go to live with her and she has even spoken to them about it. She has said that “there will come a time when you will go and live with your other mother.” She says that “even when you ask the children who their other mother is, they know.” “If anything happens to my daughter I would help and care for my granddaughter. If I was too old to do this then my other daughter would be the ideal person to care of her and would raise her” (Pumza, mother of an HIV-positive mother). Page 11

12. Planning Contd… • Preparing inheritance wills • Most mothers rent or live with extended family • Only two mothers prepared wills • Agency of mothers in financial planning evident—but insufficient in most cases to secure well-being of their children, even in the short-term • Only 1/3rd of the mothers could afford a funeral policy Page 12

13. Living as Orphans—Fostering and Adoption • Idealized protocol of patrilineal responsibility but matrilineal relatives play most critical role in fostering orphans • Sick mother taken care by her parents. Status quo maintained after death • Children/HH has not had contact with father or father’s family • Patrilineal uncles may not want to foster • Decisions to take in children seldom contested, where conflicts occurred • they were related to tensions between the patrilocal residence ideal and the matrilocal status quo • to obtain the deceased’s property or to access social grants • Legal “fostering” vs. customary ‘adoption ” • Motivations to legalize customary adoption • Access to FCG and • Prevent future custody claims (matrilineal vs. patrilineal) • Barriers include: Insufficient information or ability to undertake the process; strong belief in customary adoption, duty Page 13

14. Living as Orphans—Discrimination • Strong discourse on African norms that require equal treatment of all children regardless of orphan status • Observations generally confirmed this • But discrimination also observed and reported by key informants so do not take this for granted (related to property, in-laws) • Difficult to research eliciting pride and defensiveness among informants Schooling • Problems at school were described to be more related to poverty than to being an orphan per se, although the two are sometimes related Page 14

15. Living as Orphans • Orphans and fostering HHs largely suffer the stresses of other poor household • But, orphans do suffer some unique stresses from having dealt with parental illness and death, affecting them at home and school • Child-headed HHs face severe risks with respect to food security, schooling, health, violence, crime, discipline, teen pregnancy, and HIV. • Stark absence of specialized services to assist them. Can’t access grants. Page 15

16. Current Sources of Support • In addition to support by family and neighbors, NGOs, CBOs and FBOs are main sources of support offering a variety of services including • counseling (WC & KZN) • Activist groups like TAC (WC) • Training of mothers and orphans + limited food rations (WC & KZN) • Drop-in centers, after-school feeding, recreational activities (KZN) • Assistance with grant applications (KZN, WC) • Such activity notably absent in EC • But in all areas, few and ad hoc, and funding highly insecure • Main sources of govt. support • Child Support Grant—age limit 14 yrs • Old Age Pension • Foster care Grant—centerpiece of govt. support , but uptake miniscule Page 16

17. Grants in the HIV & AIDS context Child Support Grant • The reason for being refused the CSG: applicant could not be established as the primary care giver was much higher fostering (23 %) than for non-fostering households (4.4%) Old Age Pension • Addition of OVC a strain Foster Care Grant • Inability to meet stringent criteria • Lack of knowledge about and assistance with application process • Concern over length of time involved; • Doubts about success of applications Critique of Foster Care Grant • Too expensive, difficult to access, places too much burden on the social welfare system, unfairly targeting only a sub-group of poor children when assistance is needed by all poor children (Meintjes et al 2004) Page 17

18. Conclusions and Recommendations Supporting children in enabling them to be effective agents of response • HIV education at schools • Life skill straining enables positive adaptation • Comprehensive counseling programs to all children Mothers/caregivers too need assistance • Counseling and training related to issues of disclosure • Programs addressing the ways they can save or invest in their children’s future under the constraints of poverty. • Legal assistance in accessing child support from fathers and in planning for inheritance and will preparation • Assistance in ensuring that their children can access grants even after their eventual death and consequent migration of children Page 18

19. Conclusions and Recommendations • Mothers/caregivers need to feel that they are able to take part in the future financial security of their children, and children need to feel that their parents, while no longer alive, have left them a legacy • Don’t assume that current family structures absorb orphans without strain—need monitoring and response mechanisms • Special forms of assistance needed to reach child-headed households—with grants and other services • Need systematic state policy supporting interventions currently shouldered by NGOs and CBOs • Need means of targeting OVCs without stigmatizing them, and policy approach fair to other poor and equally needy children • Research, polices and interventions should contribute to this agenda Page 19