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Health-deviation self-care, dependent-care, disclosure, and health of children with perinatal HIV/AIDS.


The purpose of this research, conceptualized within Orem's (2001) self-care deficit theory of nursing, was to examine health-deviation self-care, health-deviation dependent- care (including disclosure), and health of school aged children with perinatal HIV/AIDS (P-HIV/AIDS). Basic conditioning factors of child age, SES, and type of caregiver were also examined. Child/caregiver pairs (N = 31) completed the Modified Family Responsibility Questionnaire to assess P-HIV/AIDS specific care behaviors that each engaged in. Caregivers responded to additional self-care items on the Health Habits Scale. Child/ caregiver pairs also reported the child's knowledge (disclosure) level of his/her illness. General Health was measured by the Child Health Questionnaire (CHQ-CF87). Obtained from chart review, illness-specific health measures included: viral load, CD4 count, and CD4%. Both child and caregiver self-care behaviors were focused primarily on nutrition and infection prevention. The most frequently reported dependent-care behaviors were primarily administrative tasks, from both child and caregiver perspectives. Caregivers reported 58% of children disclosed, while 38% of the children reported disclosure. The majority of children were mildly immunosupressed; general health scores were better than standardized scores for several scales of the CHQ-CF87. A major finding was that children's self-care behaviors and their disclosure level together predicted 26% of the variance in the P-HIV/AIDS specific health outcome of viral load. Disclosure level alone predicted 15% of the variance in viral load. Other important findings were that disclosure level predicted 30% of the variance in children's self-care behaviors, while caregivers' dependent-care behaviors predicted 27% of the variance in children's self-care behaviors. Child age and caregiver education level predicted 50% of the variance in disclosure level. Child age alone predicted 34% of the variance in disclosure level, 22% of the variance in self- care behaviors, and 22% of the variance in dependent-care behaviors. Conceptualization and measurement of P-HIV/AIDS specific care behaviors, disclosure level, and examination of relationships between these and child health outcomes were important contributions to nursing knowledge not previously reported. The specific relationship of care behaviors and disclosure level predicting viral load is a new an important finding in the field of P-HIV/AIDS.