Abstract

AIM To ascertain the psychological, social, and educational needs of children born to mothers with HIV infection.

METHODS Review of case records of 120 children and 86 mothers.

RESULTS The cohort of 120 children were born to 92 women, and followed up for a median duration of 48 months (mean (SD) 51.1 (34.1), range 0.3–132). Sixteen children were infected with HIV, 15 were of indeterminate status, and 89 uninfected. Eighty one children (68%) were cared for by their birth mother, of whom 52% were single women and 23 (38% of 61) known to have symptomatic HIV disease. Twenty five mothers of 32 children had died; the child’s mean (SD) age at maternal death was 66.9 months (37.7) (range 4–128). Compared with uninfected children, more infected children knew of their mother’s diagnosis (31% v 5%) and mothers were also more likely to disclose their own illness to educational authorities (77%v 13%). A larger proportion of infected children had special educational needs (69% v 13%). Only 33 children (28%) were known not to be receiving any support from the voluntary or statutory agencies.

CONCLUSION The results highlight the multiple needs of children living with maternal HIV infection, which require dedicated resources and commitment from health, education, and social work agencies and the voluntary sector. We propose the model of chronic illness as the standard of care for these children.