The 'family' context of HIV: A need for comprehensive health and social policies

Abstract

This paper reports on the findings from a multi-site psychosocial study of Canadian families with HIV-positive mothers. A total of 110 adults, representing 91 families across Canada participated in interviews. Qualitative analysis revealed a number of themes including: a complex web of personal, health and family concerns; the needs of children; family finances; disclosure dilemmas; and social experiences and challenges. These themes reflect an intricate and dynamic picture of parental and family life for adults and children living with HIV infection. Nowhere in the literature do we see HIV framed as a 'family infection'. Surveillance reporting reflects information on infected adults and children but not family groupings. Yet with HIV several family members and multiple generations as well as single or both parents may be infected, highlighting the importance of 'family HIV' as a framework for health policy and programme development. At issue is the problem that medical and other institutions view issues of surveillance, treatment and care through the lens of the infected individual, rather than being family focused. Often it is only in the context of identifying support, or barriers to support, for the medically diagnosed individual that biological or socially created families become a focus of concern. The failure to situate both chronic and life-threatening illnesses within the family setting has serious quality of life and planning consequences for parents and children living with HIV infection as well as other illnesses.