Psychosocial Correlates and Coping Strategies Associated With Long-Term Survival of HIV-Infected Children

Children and adolescents with HIV/AIDS are living well beyond the life expectancy that was projected for them in the recent past. Little is known about the psychosocial variables that coincide with long-term survival of HIV/AIDS. This longitudinal study will examine the psychosocial factors and adaptive coping strategies associated with long-term survival of HIV/AIDS and how these factors change over a period of three years. In addition, data will be collected from the primary caretakers on both their own and their perceptions of their child's adjustment and coping. Subjects will include children who have been infected (either perinatally or through transfusion) for at least eight years and who are aware of their diagnosis.

Studies of children with chronic illnesses report that adaptive coping strategies such as maintaining a hopeful attitude, social support and information seeking may affect psychological adjustment and help to buffer the negative psychological effects that a chronic illness may have. HIV-infected children not only have the added stress of living with debilitating and progressive symptoms in a disease that threatens their life spans, but their disease often stigmatizes them and causes them to be ostracized. The largest proportion of children with HIV disease acquired it perinatally, and therefore the mother is also infected. Thus it is expected that these families have at least two infected natural family members, causing multigenerational effect in terms of epidemiology, multiple separations and the death of close family members. As a result, children need to develop coping strategies in order to deal effectively with this disease.

Preliminary results from a longitudinal study assessing psychiatric disturbances in HIV-infected, school-aged children indicate that these children exhibit elevated levels of separation anxiety, depression and overanxious disorder. Whether similar results will be found in older HIV-infected children is not yet known. Research that can identify the coping resources, such as social support, family communication styles, hopefulness and quality of life, that 1) buffer the negative effects of stress on the mental health of HIV-infected children and 2) identify areas of vulnerability, would be important in our attempts to design early mental health interventions.

The HIV-infected child's perceived social support, self-esteem, psychological adjustment, and adaptive coping will be based on self-reports from the child. The caretakers will also give ratings of the child's adjustment in addition to providing information on how they feel their child has changed in the past year. Caretakers will complete measures regarding family environment, their own adjustment, and demographic variables. The child's health care provider will complete a questionnaire assessing his/her current health status. The effects of age and disease progression in both the child and parent will be taken into account for the final analysis of this study.