University of Zambia Medical Library

Summary of Results of a Study of Families Living With HIV (November 1997)

Key Findings:

• The patients in the study were at different stages of HIV-related illness, from asymptomatic to terminally ill. Patients were found to have much poorer mental health than adults in the control households. Possibly counselling techniques which are used to enhance mental health are used less often when a patient is physically ill than at the point of testing for HIV. A third of the patients died during the nine month period of the study.
• 82% of the children were reported as showing reactions to the sickness of their parents. Children as young as one year old changed their behaviour in some way when their parent was unwell. Although parents were able to discern their children's concern about their health, less than a third said that they had talked to their children about any aspect of their illness.
• Discussion about the future was also very rare, either because the patient did not want to upset the child or because it did not seem possible to make any realistic plans.
• Parents who had poor mental health were significantly less likely to have discussed their illness with their children. Possibly being able to confront their situation openly within the family contributed to mental well-being.
• Concern has been expressed that orphans or the children of sick parents may lack parental control and their behaviour may become anti-social, or a-social, as a result. The children in this study did not reflect this concern. The children of the patients were no more likely to be behaviourally disturbed than the children in the control households. The children whose behaviour was worrying their families were very few.
• The children of patients did, however, show signs of psychological disturbance. The children of sick parents were significantly more likely to be "unhappy", "worried", "solitary" and "fearful of new situations" than the children in the control group.
• Children who had lost one or both parents were significantly more likely to be "unhappy" and "worry about many things" than those living with both parents, even if the parents were unwell. Studies in industrialised countries have linked loss of a parent in childhood with increased suseptibility to depression in adult life. The findings of this study suggest this may be true in an African context too. Incresed incidence of depressive illness as bereaved children become adults is one aspect of the HIV pandemic which has not previously been considered.
• There was no correlation between the poor mental health of the parent and psychological disturbance in the child. Possibly the influence of other adults in the household has a mitigating effect. Only 9% of the children lived in households with no other adults apart from their parents.
• A number of patients reported that the decline in their economic situation following the death of the breadwinner had contributed to stress in the household. Children also said that reduced income caused distress because there was no longer sufficient food and money was not available for schoolrequisites and clothing.
• Surprisingly, the children in the study families were more likely to be in school than the children in the control households living in the same residential areas. Although finances were often a problem, parents and children valued education and made sacrifices so that the children could be in school. Children reported that being "chased" from school because of financial problems was one of the most distressing aspects of parental illness and death. Education appears to provide both stability and hope for the future.
• Mobility of AIDS-affected children has been a concern because of the possibility of frequent moves or residence with unknown relatives producing adverse effects on the children. However, the children in this study did not appear to be moving because of their parents' illness. No child was living with other family members directly because of the patient's illness. Three reasons were given for the child living elsewhere. When parents were divorced or never married, children were being cared for by their other parent; financial constraints, not specifically linked to the parent's illness resulted in children living with aunts, uncles or grandparents; non-availability of school places in Lusaka was another reason for children to be looked after by relatives in the Coppperbelt or in rural areas.
• There was some change in household composition during the study but the majority were stable. Bereavement did not result in change of home for most of the children during the course of the study. At the end of the period the children of 6 of the patients who had died had moved home. There were no child-headed households, although one young married woman was taking care of her younger siblings.

CATHERINE POULTER
PJP ASSOCIATES LTD. DEVELOPMENT CONSULTANTS
P.O.BOX 50817, LUSAKA, ZAMBIA
SULMACH BUILDING, SHOWGROUNDS, LUSAKA
telephone: +260-1-253043/255384
FAX +260-1-250314/255385

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Last updated November 13, 1997

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