Cynthia Cannon Poindexter

Research as Poetry: A Couple Experiences HIV

Two poems that are extracted and formed from research interviews are presented as examples of a possible way to represent research data. The practice of developing research poetry is problematic due to a lack of evaluation standards. Yet poems can be a powerful narrative tool to further empathy and understanding and can serve education and advocacy goals.

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 parents 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 worlds 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.

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.

Older Caregivers for Family Members With HIV or AIDS: Reasons for Caring

This qualitative study explored the experiences of 19 older women from minority communities who provided care to their children or adult relatives infected with human immunodeficiency virus (HIV). These caregivers felt that providing this care contributes significantly to their sense of identity. Most provided care because of their sense of personal commitment to caring for the individual in need or because they felt they were the best or only available source of care. The findings reveal a previously hidden group of aging family members who provide extensive support for people with HIV and AIDS while paying minimal attention to their own needs.

“They don't even greet you”: HIV Stigma and Diagnosis Disclosure Experienced by HIV-Positive African Immigrants and Refugees in New Zealand

Due to recent changes in New Zealands HIV and immigration situations, there is a growing need to understand the lives of HIV-positive African newcomers there, including how and when they encounter HIV stigma and discrimination. To illuminate the experience of these individuals, interviews with 13 African immigrants or refugees in New Zealand described difficulties with and causes of HIV stigma and decisions about disclosure of HIV diagnosis. The continued presence of stigma suggests that more work must be done on HIV education, privacy enforcement, antistigma campaigns, culturally competent care, and enforcement of existing human rights laws.

Management Successes and Struggles for AIDS Service Organizations

Abstract AIDS Service Organizations (ASOs) began 25 years ago as alternative, community-based advocacy entities designed to address institutional neglect. They evolved into hybrid agencies, both activist and service-providing. As ASOs have changed, they now face management challenges common in all alternative agencies in later stages and challenges unique to the HIV field. Stigma, changing practice contexts, volunteerism, partnership, cultural competence, financial health, professionalism, service integration, job stress, and organizational cohesion are presented as typical challenges and contexts, paired with strategies to address them. Managers in the HIV field must balance many competing forces as the pandemic increases while funding and attention decrease. However, shifting contexts can create successes and struggles. ASOs remain viable and necessary as part of the tapestry of human services provision.

‘Just Talking About It Opens Your Heart’: meaning-making among Black African migrants and refugees living with HIV

Meaning-making has emerged as a core construct in addressing trauma, loss or crisis. This paper considers how diasporic Black Africans living with HIV, who come from interdependent collectivist cultures where the norm is one of implicit support, extend their meaning-making strategies when faced with a diagnosis of HIV. In this qualitative study, 13 Black African migrants and refugees living with HIV in New Zealand were interviewed and the transcripts analysed. After their diagnosis, participants began a journey of reconceptualising situational and global meaning. They extended their meaning-making strategies to include a community of like others to gain explicit support. Caregivers in host countries must understand the meaning-making processes of HIV-positive Black African migrants in order to provide competent services that lead to good social and health outcomes. All healthcare and social services workers should regularly assess Black African migrants and refugees living with HIV for positive social connectedness as well as medication adherence and more specific health concerns.

United States HIV Policy from the Human Rights Perspective

HIV is not only a public health crisis, an economic crisis, and a social crisis; it is a human rights crisis. Yet in the United States, HIV has not been approached through a human rights perspective. In general, people with HIV or at risk for HIV have been treated as distrusted perpetrators, and access to needed services, information, and care have been selectively, not universally, available. Because the United States is globally influential in HIV funding and policies, our neglect and abuse of human rights have been exported. This paper uses the human rights lens to examine some of the ways in which the United States has traditionally approached the HIV pandemic and to critique those approaches, and suggests what HIV policy might be if universal human rights were considered.

Barriers to Permanency Planning for Older HIV-Affected Caregivers

Abstract HIV disease is now a major reason that grandparents and other older caregivers assume custodial care of minor children whose parents have died or become incapacitated. Grandparents are becoming custodial parents for a growing number of orphaned children, either through kinship care or informal means. Although these older caregivers are raising minors again because their adult children are unavailable due to a life threatening illness, we know little about whether these older surrogate parents are planning for the eventuality of their own deaths. This exploratory, qualitative, grounded theory study explored the permanency planning experiences of older caregivers of HIV-affected and HIV-infected minor children. Five barriers emerged impeding the permanency planning process for these older caregivers: Lack of knowledge about the legal process, lack of legal authority, emotional concerns, lack of informal social support, and HIV-related stigma. Implications for gerontological social work include the need for more supportive and legal services for older HIV-affected caregivers who are raising minors, encouraging formal adoption and/or negotiations with living biological parents, and helping grandmothers to manage disclosures and HIVstigma.