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Family matters: The care and protection of children affected by HIV/AIDS in Malawi
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Executive summary
This case study is one of a number commissioned by the Save the Children
Alliance as part of the Care and Protection of Separated Children in Emergencies
project (CPSC). It was designed to complement a series of other studies
which focused on children separated from their families in the context of armed
conflict and forced migration. It was felt that the perspectives and experiences
of children who live without their parents as a result of HIV/AIDS could inform
and be informed by the experiences of war-affected children in various countries
around the world. It was also hoped that in-depth information from children
affected and infected by HIV/AIDS could provide some insight into how boys
and girls understand the many facets of HIV/AIDS so that future interventions
could be more effectively targeted.
This study particularly focuses on the work of COPE in Malawi, a programme
of Save the Children USA which mobilises communities to respond to
a range of issues stemming from the AIDS epidemic. Although this research was
not an evaluation of this programme, it was hoped that, by using research methods
which would elicit detailed information from children, it would be possible
to formulate some conclusions for future interventions. In total, the study
reached 165 informants in three communities, including many children from the
age of 8 and upward. A great deal of the research time was spent with children
aged between 8 and 12 who participated in workshops which used a range of
participatory techniques. Individual interviews and focus group discussions
were also held with older children, guardians and other adult members of the
communities.
This case study provides a description of the COPE programme and of the
activities at the community level which stem from it: it examines the cascade
model in which capacity building and training are undertaken at various levels
based on existing government-endorsed District, Community and Village level
AIDS Committees. The COPE programme model encourages and facilitates
community ownership of the problems stemming from HIV/AIDS, an
approach widely regarded as the most cost-effective and sustainable way to
address the magnitude of the problem nationwide.
In Malawi and globally, the vast majority of children rendered parentless by
AIDS are living within the extended family. This study examines the various reasons
why such children are, or are not, taken in by their relatives. A remarkable
discrepancy was found in the views of adults and children: while adults tended
to believe that children should play no part in the decision-making around their
care, children themselves expressed clear and well-considered opinions on the
characteristics of the most suitable care arrangements, and these vary signifi-
cantly from those of adults. While adults emphasised the material capacity of a
family to care for an orphaned child, children were much more concerned about
being cared for by adults who would love them and respect the honour of their
deceased parents. This led to a strong preference for care by grandparents, even
if this meant living in extremely poor material and economic circumstances.
One of the most striking findings of this study also illustrates a strong discrepancy
in the views of adult guardians and children. In general, adult guardians
articulated a strong belief that orphaned children have many behavioural problems
and as a result are difficult to look after. They were highly critical of children
who complained of discrimination because they felt that an orphaned child
should appreciate the financial challenges posed by their arrival in the household
and should feel grateful for this act of generosity. In contrast, orphaned children
revealed a startling pattern of abuse and discrimination at the household level,
and some quite gross examples were cited. Discussions with guardians and children
highlighted a vicious circle of misunderstanding which was often difficult
to break: children brought into the substitute family high levels of distress, stemming
from what might have been a long period of caring for, and eventually losing,
one or both parents, in addition to coping with the strong sense of stigma
which surrounds HIV/AIDS and orphanhood. In the substitute family, discussion
of their late parents tends to be discouraged and they are expected to behave
well and not to complain. From the child’s perspective there is often a profound
sense of isolation because no one is paying attention to their special needs for
love and emotional support. This feeling of loneliness is compounded by a sense
of being different from other children in the household, whom they believe to
be treated more favourably. Sometimes they act out their feelings by behaving
rudely or inappropriately, or by withdrawing from family members. The resentment
which results from their less-privileged position is augmented by what
many orphaned children see to be their unmet needs for patience, love and kindness
as they work through their feelings of grief and sadness. The result is a cycle
in which guardians feel unappreciated and therefore less inclined to be supportive
to the orphans in their care, while the children themselves feel angry, alone
and unjustifiably discriminated against.
In COPE-mobilised communities, it was reassuring to find that discrimination
towards orphaned children was much less pronounced within the wider
community. It was particularly interesting to find that children deployed a range
of coping strategies which included, for example, approaching other families
outside of their immediate household for specific needs, and many dropped out
of school and sought paid work in order to meet their basic needs. They also
sought help and support from their own peer networks, and occasionally neighbours.
In addition, this research revealed children’s striking lack of knowledge about
HIV/AIDS, though where community-mobilisation around HIV/AIDS was
well-established, boys and girls had greater awareness of how to protect themselves
from the disease. Many felt that AIDS awareness campaigns have been
largely unsuccessful and children were highly critical of the hypocrisy of adults
who failed to practise what they preached. However, boys and girls were supportive
of the idea of peer education and felt that behavioural change was most
likely to occur as a result of seeing someone dying of AIDS. In particular, some
suggested that young people should be taken to talk to someone dying of AIDS
if that person was able to talk openly about his or her experience. They were also
appreciative of people who asked that their funeral be used to raise awareness of AIDS and to discourage risky behaviour. Boys and girls also emphasised the role
of parents in AIDS education, and they had a range of other ideas on reducing
children’s vulnerability to HIV/AIDS.
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