HIV diagnosis disclosure: stigma management and stigma resistance.

This article reports diagnosis disclosure decision comments arising serendipitously in five focus group discussions with 34 HIV-infected New Yorkers over age 50. Three overarching disclosure themes demonstrate the complexity of diagnosis disclosure decision-making: (a) hiding or selectively disclosing, or stigma management; (b) partial disclosure because of the perception of partial control of the information; and (c) widespread or complete voluntary diagnosis disclosure, representing stigma resistance. Social workers and other human services practitioners should remember the diversity in the HIV population, the aging population, and the HIV-positive aging population. Experiences of HIV stigma and choices about diagnosis disclosure and stigma management or resistance are individual, reciprocal, and dynamic.

Mama Jaja: the stresses and strengths of HIV-affected Ugandan grandmothers.

This paper reports an exploratory qualitative project in the Entebbe-Kampala area of Uganda with 11 grandmothers who are raising orphans because of a parent's death from HIV infection. In Sub-Saharan Africa, the highest HIV infection and mortality rates are among women, especially in their childbearing years, leading to a tremendous number of orphaned HIV-infected and -affected children. Uganda has the world's highest rate of HIV-affected orphans. In Uganda, extended family members, especially grandmothers, provide general orphan care, AIDS care, and care for HIV-affected orphans. If orphans have places to stay, they are most often with grandparents and other elderly relatives in rudimentary village dwellings. Many of these elders are in poor health, recovering from nursing their adult children as they died of AIDS, and suffering from an extreme lack of financial resources. The burden of HIV-affected orphan care is enormously heavy. Services are not being provided adequately to custodial grandparents who are enormously challenged spiritually, socially, emotionally, financially, physically, and mentally. The following themes emerged from the interviews: experiencing extreme economic deprivation; feeling physically challenged with caregiving; being concerned for the children under their care; and struggling to cope through action, resilience, and relationships. Recommendations for research, practice, and policy are offered.

The lion at the gate: an HIV-affected caregiver resists stigma.

This article examines two bounded stories of HIV stigma told by an older woman who took care of her adult son as he died of AIDS. Her self-definition as a protector of her dying son was challenged when she encountered ostracism and prejudice. Her words and expressions illuminate her confrontation and resistance to associative stigma. An expansion of Goffman's view of stigma management is necessary to understand this caregiver's experiences in the face of the larger cultural narrative of HIV stigma:This caregiver did not manage stigma, she actively fought it.

Unserved, unseen, and unheard: integrating programs for HIV-infected and HIV-affected older adults.

This article explores the parallel structures and service delivery systems of the Older Americans' Act and the Ryan White CARE Act, argues that social workers should have a working knowledge of both pieces of public policy, and suggests integration or coordination of aging and HIV services. Two vignettes illuminate the issues and implications for HIV and aging network social workers. The authors argue that HIV social workers should know more about services for older people and that gerontological social workers should know more about HIV services so that HIV-infected and HIV-affected older people do not remain unserved, unseen, and unheard.

Medical profiling: narratives of privilege, prejudice, and HIV stigma.

In this article, the author uses selected narrative analysis methods to deconstruct stories presented in separate interviews by a married couple who believe that their HIV-infected adult daughter has been victimized by medical profiling. In their accounts, they construct their belief that their daughter's gender, race, education, appearance, and socioeconomic status contributed to her not receiving an accurate diagnosis despite repeated medical examinations. Their similar accounts paint a picture of parents frantically seeking a diagnosis as symptoms worsen without explanation. They perceive that their daughter, not fitting the profiling ideas about who is at risk for HIV, missed her chance for early intervention. The author examines in detail how these parents separately tell similar stories, probably representing the explanation they have jointly constructed to explain what they see as a failure of medicine.

Choices and voices: participation of people with HIV on Ryan White Title II Consumer Advisory Boards.

This article presents an assessment of the functioning and training needs of consumer advisory boards in Massachusetts (CABs) who advise the Massachusetts agency and the consortia funded through Title II of the Ryan White Comprehensive AIDS Resources Emergency Act. The study found that the stage agency and the CABs valued the role of consumers in policy making, but the mechanisms for translating this goal into reality were not always clear or available. The CABs wanted more opportunities to interact with HIV/AIDS Bureau staff and with one another. The CAB members expressed need for ongoing training and technical assistance for themselves and for consortia staff. This project was an example of action research, for the purpose of change and mobilization.

Teaching and learning by example: empowerment principles applied to development, delivery, and evaluation of community-based training for HIV service providers and supervisors.

This article describes and recommends a participatory method of developing, implementing, and evaluating a learner-driven community-based continuing education effort for HIV workers and supervisors. The Boston University School of Social Work (BUSSW) created and delivered a training program in partnership with the Massachusetts Department of Public Health HIV/AIDS Bureau (the Bureau). Because teaching empowerment-based practice was an overarching goal, every step of the process modeled collaboration and self-determination. The program was unusual in several ways: the workshops focused on basic helping skills rather than the medical aspects of HIV; community stakeholders shaped the workshops in consultation with staff from the Bureau and BUSSW; a formative evaluation led to adaptations of the curriculum in the first few months of the project; objectives were set in part by learners, who evaluated themselves on goal attainment; and follow-up interviews explored the effects of the workshops on practice. Most supervisors and direct care workers reported that the workshops were highly relevant to their work and that they were able to incorporate their learning into practice, suggesting that the empowerment approach has utility. The report includes the genesis and necessity of the project; the principles underpinning it; the use of empowerment at each stage; and implications for administrators, service providers, and educators in the HIV field. We propose that resources dedicated to collaborative or participatory curriculum development, implementation, and evaluation are well spent.