Social Planning in Canada for Families with HIV Infection

Article excerpt

ABSTRACT

Parents living with HIV and their children face complex medical and social problems Whether the children are infected or not, they are all affected by the presence of HIV in a parent. The purpose of this article is to describe the problems of families with HIV and to propose social planning neasures to respond to their psychosocial needs. It is based on a multicentre study that included in-depth interviews with 110 parents representing 91 Canadian families living with HIV. The study's findings and recommendations were reviewed by parents with HIV, social workers specializing in helping affected families, and a multidisciplinary consensus conference. This process identified six areas needing attention: stigma and disclosure; promoting and supporting family health; planning and transitions for the care of children; economic issues; cultural and immigrant issues; and education, advocacy, policy development, and research. Recommendations for action were made in each area.

ABREGE

Bell & Howell Information and Learning Foreign text omitted

The number of Canadian families with HIV-infected parents has grown in proportion to the increase in infected women. In 1995, 19% of people newly diagnosed with HIV in Canada were women of childbearing age - more than double the percentage diagnosed earlier.' Family HIV, defined as a situation in which mother, father, or both parents are HIV-positive, can be a multigenerational infection carrying a painful stigma and affecting all family members, not just those infected. Children and parents living in families with HIV/AIDS face many complex, highly stressful psychosocial issues, both immediate and long-term, as HIV threatens their security.2-5 As in other countries, social planning is required to address these issues.6-8

This article is based on a large multicentre study, funded by Health Canada, that investigated - for the first time - the psychosocial needs of families with HIV in Canada.2 The purpose of the article is to describe the plight of these families and to propose social planning measures to respond to their needs. It briefly describes the complex family problems arising from the presence of HIV, the difficulty in estimating the number of affected families, and medical advances in treating people with HIV infection. The concerns parents expressed during interviews are summarized and recommendations for social policy presented.

BACKGROUND

Complexity of the presence of HIV in families

When one or more family members are HIV-infected, families are affected in a variety of ways, the severity of which largely depends on three factors: 1) Family structure and life-stage tasks (e.g., each member's sex, age, and role); 2) HIV status of each member: positive, negative, or indeterminate (in infants too young to be diagnosed); and 3) health status of HIVpositive members: asymptomatic, symptomatic, having AIDS-defining illness.

HIV status alone leads to complex family situations. One or both parents may be infected; all, some, or none of the children; or all family members. Sole parents, perhaps widowed by the death of their partner from AIDS, may head the families. When sole mothers or fathers, or both parents, are infected, concerns about the future care of the children, whether infected or not, are paramount. If only one child is uninfected, he or she faces the possibility of losing parents and siblings. Reports of the psychosocial impact of HIV on families describe its profound effects on parents, children, and extended families as well as on communities and institutions.3-5,9-20

The following example graphically illustrates how some of these issues affect families.

M., a woman in her 30s, had many lingering infections for several years. Eventually her family doctor suggested testing for HIV. She tested positive. Her husband and 6-year-old son were also diagnosed as HIV-positive, but two older children, girls aged 8 and 12, tested negative. …