The initial diagnosis of HIV infection commonly precipitates a family crisis. There are concerns that a partner or parent might die, worries about the future of the family, and guilt over responsibility for the infection.² As the sense of crisis dissipates, a family begins assessing and responding to its new reality.

The subsequent impact of HIV disease and AIDS depends in great part on expected disease outcome, whether that of a chronic illness still permitting normal functioning in daily life or a progressive illness with deteriorating medical and mental health ending in death.³ Worldwide, HIV disease and AIDS largely remain fatal, with a high level of stigma. In the United States, however, effective antiviral medications, elimination of perinatal HIV transmission, and educational campaigns have partially shifted perceptions of HIV infection toward that of a chronic, but manageable, medical illness.⁴ In this regard, HIV disease and AIDS in the United States bear increasing similarities to other slowly progressive chronic diseases, such as cancer and heart disease.

A major stressor in nearly all cases is the inevitable shift from a lifestyle organized about usual family concerns to one organized around doctor visits, diagnostic tests, medications, and costs of medical care.² This stress is particularly severe for single mothers, whose fatigue and other medical symptoms both hinder parenting and limit family income. A 1996 Canadian study of 91 families with HIV infection or AIDS found two generations infected in 42% of the families, compounding the challenges in managing the illness.² This study identified the following as dominant themes of family stress among families with HIV infection or AIDS:

The primary clinical strategy with families coping with HIV-related stresses is to partner with the couple or family in composing a plan that simultaneously accepts the reality of HIV infection or AIDS as a permanent presence in the couple or family and works to minimize the amount of time, energy, and other resources that HIV disease and AIDS take away from family life.

A family-centered approach to care of HIV disease and AIDS assumes that the impact of disease will largely result from the natural course of HIV infection and AIDS intersecting with the following domains of family life³:

An assessment of family members’ levels of scientific knowledge is an initial concern because an understanding of the natural course of HIV disease and AIDS is vital not only for the immediate crisis but for the family’s plans over the next decade. Developmentally, HIV disease and AIDS have most affected the 25- to 44-year-old age generation in families, who normally should be parenting the next generation.⁴ Identifying specific developmental tasks that need to occur helps family members to avoid secondary effects from the illness on
children and other well family members. Assessment of family structure helps clarify the state of readiness for managing a long-term drain on family resources from HIV disease and AIDS, particularly when there are comorbid medical disorders, substance abuse, or HIV-related cognitive or mood disorders. This drain is heaviest when the HIV-infected member is a single parent or the primary wage earner. Assessment of communication processes gauges whether dialog that can ameliorate suffering and facilitate problem-solving is possible. Assessment of family beliefs focuses on issues of stigma both within the family and between family and community. Families can hesitate to provide needed support for an ill member when they fear contagion, blame the HIV-infected member for contracting the virus, or fear shunning by their surrounding community.

A family assessment prioritizes identification of competencies, resources, and practical wisdom within families that can be brought to bear on the adversities of HIV disease and AIDS. However, it is important that the assessment screen not only for strengths, but also for specific family factors that can speed disease progression or place family members at risk. The culture of a family can adversely affect the health of its members when it hinders transmission of information about HIV infection and AIDS, fails to parent effectively adolescents at risk for infection, or produces neglect of family members ill with AIDS.

The following family factors have been demonstrated to increase risk of infection among adolescents⁴:

Adolescents who engage earlier in sexual behaviors are those with low levels of parental support or greater emotional distance from their families.⁴ When recognized, any of these factors should become a focus of preventive intervention. They have become the impetus for community primary prevention programs, discussed below.

Family members with AIDS fare poorly in a family culture that intensifies affects of blame, shame, guilt, fear, and despair. Psychosomatic research has raised concerns whether negative emotional arousal can directly impair physiologic resistance to HIV infection and AIDS disease progression via stress hormones, autonomic nervous system dysregulation, and attenuation of immune competence.⁵ Aside from direct physiologic effects, such an emotional climate disables family members’ capacities to communicate and to team effectively in managing the challenges of a chronic medical illness. For ill family members, it fosters demoralization that can lead to self-neglect and nonadherence to medical treatment. Family beliefs promoting a family climate of negative emotional arousal require clinical intervention.

Other deleterious effects result from secrecy. Research on family factors has shown that family knowledge about and attitudes toward HIV infection operate as independent factors separable from stigma generally present in society. Secrecy about HIV status damages intimacy and effective problem-solving in couples and families. A “double crisis” can ensue when the family discovers unsuspected homosexuality, bisexuality, infidelity, or drug use at the same time that they learn that a family member is infected. The family member must then cope with the ensuing family crisis at the same time as new health problems and death and dying issues are arising.⁴

Families can both decrease the risk of HIV transmission and also provide vital support for infected family members. To maximize positive family contributions, the National Institute of Mental Health (NIMH) Office of AIDS has adopted the definition of a “network of mutual commitment” to connote the often improvised social networks that subserve the traditional roles of family members for people with HIV disease or AIDS.⁴ HIV infection and AIDS are disproportionately represented in poor and minority communities, where intact nuclear families are the exception rather than the rule. Families at risk, or who have HIV disease or AIDS, often have nontraditional family structures, with friends or lovers fulfilling traditional roles of family members. Differentiation between “family of choice” and “family of origin” has been particularly useful in conceptualizing the families of gay couples.⁴

A number of parent-oriented preventive interventions have been developed by members of the NIMH Consortium on Families and HIV/AIDS. Families are regarded as the single most influential force in the life of children and adolescents. Parent–child communication about sex decreases HIV-risk behaviors. Adolescents who believe that they have a close relationship with their parents are less likely to engage in early sexual intercourse. These research findings have led to family-based interventions that impart education about HIV infection and AIDS and build parental competencies that can influence adolescents’ behaviors. These programs have emphasized the sexual education role of parents, strengthening of parent–child communication, amelioration of family dysfunction fostering risk-taking behaviors outside the home, improving parental monitoring of adolescent activities.⁴