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Background to the work: An estimated 5.6 million people in South Africa are
HIV+. Those people most severely affected by HIV are those of childbearing age,
and prevalence amongst pregnant women is 29% (National Department of Health,
2008). HIV clusters in families and communities, meaning that there is
increasing strain on provision of terminal care for patients. Anti-retroviral
access remains below 30% (World Health Organisation, 2008).
Consequently, an estimated 1.4 million children are orphaned by the epidemic,
and this group has received substantial policy and international focus. But we
know that orphanhood by HIV is not a single event. Rather, it is a process
preceded by a parent’s chronic and debilitating illness, and millions of
children are forced to witness the health decline of parents suffering from
AIDS. Lacking appropriate health services , many HIV+ adults remain
unhospitalized and are cared for at home. Qualitative evidence suggests
enormous dependence on children to act as ‘young carers’ for sick and dying
parents. Voluntarily or involuntarily, children provide domestic and emotional
support, sibling care, and often intimate and medical care (Bauman et al,
2006). We know very little about the impact of being a ‘young carer’ on social,
psychological and educational development, health and life chances. Both
research and policy have, to date, have failed to address the needs of this
invisible group of children – not yet orphans, but arguably undergoing extreme
social, economic and psychological challenges.
Significance of the study: The scale of the problem is enormous. But before
urgently-needed interventions can be designed, basic understanding of the
situation is needed. We need to identify the extent and types of caring work
children are doing, and then to measure the impacts on children’s social,
psychological, health and educational development. It is also essential to
identify the risk mechanisms by which children develop negative outcomes. For
example, young carers may be exposed to increased risk of contracting HIV
themselves through a number of possible routes (Cluver and Operario, 2008). One
potential route could be severe economic deprivation: AIDS-affected families
suffer financial hardship and children may be more vulnerable to transactional
sex. Another potential route could be early sexual debut: debilitated parents
may have reduced capacity to monitor adolescents, leading to increased risk
behaviours (Operario et al., 2007). Another possible route could be direct
bodily fluid infection through providing medical care for HIV patients (Lindsey
et al., 2003). Each of these possible risk factors suggests very different
interventions, and very different policy responses. Thus, identification of
these specific mechanisms is critical in informing the design of effective
interventions.
Objectives: The goal of this proposed study is to achieve greater understanding
of the effects of parental AIDS morbidity and acting as a ‘young carer’ on
health and educational outcomes for 3000 children aged 12-18 in South Africa.
This context of parental illness is characterized by co-existing health issues
(such as tuberculosis and malnutrition), extreme poverty, poor health and
social services, and the ongoing apartheid legacy of institutionalized social
inequality and deprivation in Black African-designated environments.This
proposed study will be the first known to address this potentially highly
vulnerable group of children. The study will also be the first to compare
orphans, children with AIDS-sick parents, and children in non-affected familes.
The study features a prospective longitudinal design, through which we can
specify mechanisms and routes by which parental illness and parental death
impact on child outcomes.
Specific aims of the study:
* To identify what
caring tasks young carers undertake We will examine type and amount of care
tasks undertaken by children with AIDS-unwell, other-unwell parents, orphans
and non-affected children (i.e. medical care, intimate care, domestic tasks and
sibling care). We will examine associations between care activities, positive
and negative outcomes.
* To examine the effects of being a young carer on key developmental
outcomes We will use cross-sectional and longitudinal data to examine
hypotheses about increased risk of adverse outcomes (physical health, mental
health, sexual risk, social and educational) for children who have experienced
parental death or parental illness due to AIDS.
* To identify policy-relevant risk and protective factors for child
outcomes We will test the effects of hypothesised policy-relevant risk and
protective factors (i.e. malnutrition, school access, stigma, extent of
caregiving) that may mediate the association between parental AIDS
morbidity/mortality and child outcomes.
* To identify phases of specific vulnerability for AIDS-affected children
The longitudinal design will allow us to test when children are most vulnerable
in the process of parental sickness and death, in order to inform the targeting
of interventions at the most relevant periods for children.
* To work with government and NGOs to inform evidence-based policy for
‘young carers’. This study has been designed in collaboration with the SA
government and key NGOs, and is specifically aimed at informing policy.
6-monthly feedback to the Departments of Social Development, Health and
Education has been established. Feedback to the National Action Committee will
take place at their annual conference.
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