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HIV stigma contributes to risks for poor health; these risks are exacerbated by additional stigmas of race, gender, sexual orientation, and substance abuse history. As women continue to be infected by HIV and as people with HIV are living longer, their children, most of whom are not HIV infected, are affected by their parent’s HIV status. Children may feel stigma as acutely as their HIV-positive (HIV+) parents, contributing to the children’s vulnerability. Children of HIV+ mothers have more emotional problems, disrupted relationships, and poor school outcomes than those whose mothers are not living with HIV. As we learn about stigma’s impact beyond the individual, we are compelled to respond systemically within families to reduce future generations’ vulnerability to HIV and other risks. Based on a line of inquiry with HIV-affected teens about their stigma experiences, our multidisciplinary team discovered stigma’s impact on our ability, not only to study stigma, but to engage parents and especially their children in services and research. We draw on these findings and the literature on community-based participation to contend that participatory methods have value, not only for research and program development, but in reducing the impact of stigma with our HIV-affected partners. The participatory process is as important to stigma reduction as knowledge and service development outcomes. Participatory methods can expand our potential for breaking the cycle of intergenerational vulnerability by strengthening family skills and capacity and enhancing self-worth so those affected by HIV are empowered to overcome stigma’s impact.

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...

Objectives: African American urban adolescents are one of the fastest growing groups of children affected by their mother’s HIV status. These children experience HIV stigma by association with their HIV-positive mothers. Stigma may contribute to adverse outcomes for these teens. Methods: The authors describe a multistage process of scale construction, cognitive interviewing, and pilot testing to develop a measure reflecting an African American adolescent’s experience of HIV stigma when mother has HIV. Results: The resulting measure has 23 items with good reliability. An additional item suggested by qualitative data will be added to the measure and used in further testing. Conclusions: Potential uses of the measure are discussed. Intervention approaches for reducing stigma’s impact among HIV-affected African American adolescents are briefly outlined.

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 investigated the needs of relative caregivers of children in the child welfare system whose parents had HIV. Families of children supported by the state child welfare agency were invited to participate in the study; 17 families reported that HIV affected them and 11 families did not identify HIV as an issue. The findings indicate that complex emotional and behavioral issues stressed the HIV-affected kin caregivers; these issues included the children's behavioral problems, HIV-related concerns, adolescent issues, emotional difficulties, and sexual abuse, HIV-affected caregivers had more concern about their health and multiple roles. Nonaffected caregivers were less likely to report severe parenting stress and more likely to report financial stress. HIV-affected caregivers require attention and intervention by social workers, child welfare workers, and case managers.

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.

Women constitute one of the fastest growing groups of people infected with HIV. Women have always been affected by HIV as informal or formal caregivers. Despite this, HIV services and education have been directed almost exclusively towards men. Given that women comprise half of the workforce, the change in the face of the epidemic requires a reexamination of the EAP professional's approach to AIDS education and services. This article delineates HTV-related issues specific to women and their impact on the functions of the EAP. Suggestions are made for targeting AIDS workplace education and prevention to women. The implications of women's issues on early identification, counseling, and referral by EAP professionals are also explored. Consideration is given to the cultural and socioeconomic diversity of women affected by HIV.