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We hear it all the time and know it to be true—HIV does not discriminate based on age, race or ethnicity, gender, sexual orientation, or socioeconomic status. This issue explores living with HIV th...

Stigma affects not only the person living with HIV, but also, by association, their family members. Stigma-by-association may contribute to adverse outcomes for children of parents living with HIV. We interviewed 27 African-American adolescents, 13–18 years old, who were not HIV-positive but whose mothers were living with HIV. As part of a broader study, adolescents responded to four open-ended questions regarding their experience of HIV stigma-by-association. Their responses were analyzed using ATLAS.ti to identify themes. About half of the teens had not told anyone their mother’s HIV status but had heard peers make fun of or insult people with HIV. Anticipating stigma, teens used a range of strategies from being silent and vigilant to brushing off insults as ignorance and refusing to feel shame. In some instances, these strategies strained peer interactions and reinforced the mother/teen connection. With guidance, mothers may be well positioned to coach children and teens to identify stigma situations, ...

To understand the beneficial aspects of a psychoeducational group, parents living with HIV participated in two telephone interviews. Twelve parents answered open-ended questions about program processes, components, and activities. Study participants identified five processes: focused and motivated; learn from each other; share freely with people who understand; support and care about each other; respect each other's privacy; and protect each other. The identified knowledge areas—self-care, parenting, and goal-setting—were consistent with the program's focus. Components noted were those activities designed to develop comfort between participants, share ideas, and practice skills. Goal-setting and monitoring progress represented a primary task that brought focus to the group's endeavors and around which knowledge was shared and feedback and support were provided, strengthening the bonds between the participants. As people with HIV are living longer, programming can take a future orientation, supporting pare...

Grandparents and other relatives increasingly assume the role of primary caregiver to minor children. This study interviewed family members caring for children whose parents were not available due to parental incarceration, other involvement in the criminal justice system, and substance abuse-related issues. Interviews with 25 African American women examined the impact of caregiving including stress and depression. Stress included caregiver issues related to finances, time allocation, care responsibilities, and concerns about the absent parent, as well as issues specific to the children related to school concerns, child behavior, and emotional problems. These stresses were examined along with caregiver depression scores using the Center for Epidemiological Studies Depression Scale, which indicated more depression related to caregiver illnesses, older caregivers, and care for older and a larger number of children. This study suggests that caring for these children is both challenging and stressful, and car...

As people with HIV are living longer, HIV-infected parents are raising children while managing the effects of chronic illness and stigma. Groups need to adapt to the changing needs of people with HIV/AIDS. The Making Positive Changes Program uses groups to enhance social support and to provide education on issues that affect families with HIV. Sessions focus on one of two major topics-self-care and parenting-with consumer involvement in planning and facilitation. Challenges included those typical to group work but also specific to HIV/AIDS, especially stigma. As the program develops, consumers will increasingly participate in and guide group implementation.

Custody planning programs for HIV-infected parents help families overcome the obstacles to making future plans for their children, in the event of the parent's debilitating illness or death. In order to understand the social work intervention, progress notes from the Family Options Project, a custody planning program, were analyzed for themes regarding: (1) methods used by the social workers and (2) the content discussed with birth parents. The social workers used problem-solving methods that helped parents examine and partialize problems and explore solutions. Content centered on planning options, parent mental and physical health, and family relationships, reflecting the complexities of planning with HIV-affected families. As people with HIV are living longer, custody planning and family preservation have become equally important outcomes for the program.

This study examined the mental health problems and service utilization patterns of kinship families who accessed services in an urban outpatient child psychiatry clinic. A random sample of children who completed the intake process during a calendar year yielded 47 children, or 19% of the sample, whose primary caregiver was a relative, other than a biological parent; approximately half of those families were involved with the child welfare system. Data from an administrative database and from medical records describe the diagnoses, identified problems, and services used by the kinship families. Academic or school-related problems emerged as an identified problem in approximately half of the kinship cases, but school intervention was not a primary target for clinicians. The kinship sample was also compared with a random stratified sample of children who were living with primary caregivers other than kin. Kinship families were more likely to be African-American, but few differences were found betwee...

Using qualitative methods, university researchers enlisted the participation and collaboration of community residents to assess the service needs of HIV-affected families in an inner-city African-American community with a high seroprevalence of HIV/AIDS. Community members infected with and affected by HIV/AIDSparticipated in interviews and reviewed and refined the preliminary findings. The participants were concerned by the lack of HIV/AIDScommunity services that were family-sensitive, i.e., addressed the stresses and concerns of those people who provide support and care for a person with HIV. Participants identified community awareness and education as critical to serving those infected and affected. Denial and stigma in the community need to be addressed concurrently with the development of specific services for HIV-affected families.

SUMMARY As the number of HIV-infected women increases, providers and policy makers are faced with an additional challenge-the number of children who will be affected by a parent's death from HIV. This paper reports the findings of an exploratory study of the relationship between coping of mothers with AIDS and the status of their plans for the Future of their children. Nineteen women with an AIDS diagnosis and having regular contact with their children were interviewed. A chance health locus of control, the ability to cope with the death of others, availability of informal support, and a better health status were associated with more planning by mothers with AIDS. The findings suggest interventions for helping families plan and point to variables for future research.