Sifting Through Trauma: Compassion Fatigue and HIV/AIDS

This article explores the compassion fatigue of the author and the graduate students he supervised while conducting psychotherapy with persons living with HIV/AIDS at a counseling center in Atlanta, Georgia. The metaphor of a sifter is suggested to represent the self-care strategies that providers employ to avoid and manage compassion fatigue. Several vignettes are presented and discussed from the perspective of the provider. The vignettes facilitate an examination of the contribution of trauma experienced by persons living with HIV/AIDS to the compassion fatigue of social service providers. The author recommends a renewal of research in the area of compassion fatigue among social service providers working with these clients.     

Advocating for Community Services Coordination: An Empowerment Perspective for Planning AIDS Services

With the progression of the HIV pandemic and the unique challenges it brings to community-based health and social services, comprehensive service planning becomes essential for the well-being of those affected by AIDS. This article reports on an educational program using an empowerment-based community practice model in responding to the AIDS crisis. This was a service planning coordination effort tbat included compiling a comprehensive directory and profile of local services, measuring practitioner knowledge and attitudes toward working with persons affected by AIDS, and analyzing planning policies of HIV service agencies. This joint work included faculty, students, and community service providers.     

Differences in health-related quality of life among persons living with HIV/AIDS

We sought to identify differences in health-related quality of life (HRQoL) among a sample of HIV positive individuals receiving case management services in northern Florida. Our study consisted of 97 individuals receiving HIV case management that included 56 males (57.7%) and 81 African Americans (83.5%) who were 47.05 years old (SD = 9.33). HRQoL was measured using the HIV/AIDS Targeted-Quality of Life scale (HAT-QOL). Results show significant group differences in HRQoL by race, income, tobacco use, alcohol use, drug use, and CD4 cell count, despite only 43% of this sample being able to recall their most recent CD4 count. Translating these findings to inform practice, HIV care providers need to provide continuing education to patients about their disease status, knowledge, and treatment as it relates to self-care. Also, HIV care providers should be especially cognizant of the impact that tobacco, alcohol, and illicit drug use has on HRQoL for persons living with HIV/AIDS (PLHA) by working to assess social support, identify readiness for change, and make appropriate referrals for treatment.     

Stigma,AIDS, and HIV Prevention in Africa: Reports from Community Organizations Providing Prevention Services

ABSTRACT

The AIDS epidemic in Africa remains a serious health crisis. Nongovernmental organizations (NGOs) in Africa play a critical role in the delivery of HIV prevention services. An important barrier to their HIV prevention efforts is stigma directed at persons living with HIV/AIDS. In order to understand how stigma affects HIV prevention programming, we conducted in-depth qualitative interviews with NGO directors in 29 African countries. Qualitative analytic approaches were used to identify key themes. Substantial discrimination and stigmatization of HIV-positive persons was reported. HIV-positive women were particularly likely to suffer negative social and economic consequences. The stigma associated with HIV interfered with disclosure of HIV status, risk-reduction behaviors, and HIV testing, creating significant barriers to HIV prevention efforts.

Interventions to reduce AIDS-related stigma in Africa are urgently needed. Reducing the burden of stigma is critical to fighting the epidemic in Africa and could play an important role in global HIV reduction.     

Impairments and perceived competence in persons living with HIV/AIDS

Medical advances have transformed HIV/AIDS from a short-term terminal illness to a long-term chronic condition. Consequently, the disability experience of persons with HIV illness has shifted from issues related to physical well-being to those concerning performance of daily life activities and wider community participation. These changes have necessitated rehabilitation interventions for persons with HIV/AIDS to focus on issues related to enabling participation in all spheres of everyday activities. However, limited information is available on the impairments prevalent in the emergent population of people living with HIV/AIDS and on the impact of these impairments on the person's functional performance and participation in various occupations of daily living. The present study attempted to explore these issues as they are experienced by the emergent population of people living with HIV/AIDS. The purpose of the study was: (1) to explore occupational functioning across various activities, (2) to describe the various impairments prevalent in this population, and (3) to examine the impact of these impairments on the person's perceived occupational competence. Two instruments, the Sign and symptom checklist for persons with HIV disease and the Occupational Self-Assessment were administered to a sample of 35 individuals (Mean age=42.8 yrs.) living in supportive living facilities. Impairments most commonly identified by the participants included: fatigue; fear/worries; difficulty concentrating; muscle aches; and depression. The two primary areas of occupational functioning where participants reported experiencing moderate to severe difficulty included: managing finances and physically engaging in activities which were reported by 67.7% and 35.5% of the participants respectively. No statistically significant correlation was observed between various measures of impairments and the overall measure of perceived occupational competence for the sample of individuals living with HIV/AIDS included in this study.     

Chapter 10: Issues in HIV/AIDS Service Delivery to High Risk Youth

Homeless and runaway youth engage in behavior that puts them at risk for infection with HIV, the virus that causes AIDS. Prevalence of HIV disease in homeless and runaway youth is higher than it is among other adolescents. In addition, homeless and runaway youth are often forced to engage in sex as a means of survival. Although they engage in high risk behavior, AIDS education programs have neglected them as a target group for education. To some extent, they have been included in other more general categories of persons with AIDS risk behaviors, such as men who have sex with men or intravenous drug users. However, the number of adolescents receiving age-specific HIV/AIDS information is far below the number infected (Hein et al., 1992). Often high risk youth are disenfranchised, having been forced from home by their families after disclosing their gay or lesbian identities. Lacking a political voice and having no spokesperson, they represent a group with complex unmet needs. These youth typically have immediate needs for food, shelter, and clothing. In addition, they often need medical management, mental health and drug counseling, crisis management, and HIV/AIDS information. These needs are often overwhelming to the agencies that serve youth. This article examines the barriers and issues that exist in providing services to high risk youth. Then, suggsetions for removing those barriers by empowering both service providers and youth are offered. Some of the suggestions are based upon the authors' own experience in providing HIV/AIDS in-service training to service providers to high risk youth. The article makes recommendations for policy on youth and HIV/AIDS.     

HIV/AIDS Orphans' Education in Uganda

Abstract

The HIV/AIDS epidemic in most sub-Saharan African countries has created a crisis in the African family structure. In Uganda, older people's roles have been reversed from being provided for to providers. Older people, who are already poor, face the loss of economic support from their adult children and unexpected social, psychological and economic burden due to the care-giving role they assume. In this study, we used cross-sectional data from Kayunga district in Central Uganda to examine the impact of HIV/AIDS on the role of older persons. We found that there were HIV/AIDS related deaths in 82.3% of the surveyed households. In almost 34% of the households, the care-givers of HIV/AIDS orphans were older people over 50 years old. Almost all households headed by older people (97.8%) had on average three school-going orphaned children living in the household.     

Greater involvement of people living with HIV/AIDS in South Africa

This study reports on a pilot project, the greater involvement of people living with HIV/AIDS Workplace Model, which places trained fieldworkers living openly with HIV/AIDS in selected partner organisations sectors, where they set up, review or enrich workplace policies and programmes. The project adds credibility to partners' HIV/AIDS programmes and creates a supportive environment for people living with HIV/AIDS (PLWHA) and others to speak about HIV/AIDS. Eleven men and women living with HIV, aged between 30 and 45, and with varied life experiences and education levels, shared a willingness to speak about their HIV status in their workplace. They worked in very different environments but their collective experiences showed that PLWHA can add value to workplace HIV/AIDS programmes in a way that is relevant, effective, efficient, sustainable and ethical. They made companies and communities more aware of the intense need for HIV/AIDS policies and encouraged care and support for infected and affected people.     

HIV Prevention Programs in the Black Church: A Viable Health Promotion Resource for African American Women?

ABSTRACT

Nearly 40 million people worldwide are living with the human immunodeficiency virus (HIV). The Centers for Disease Control report that women account for more than 50% of the existing 40 million HIV/AIDS cases to date. Moreover, African-American women are infected with HIV/AIDS 25 times more often than white women and four times more often than Hispanic women, making HIV/AIDS the leading cause of death for black women ages 25–34. Given the increasing rate of transmission with this population, the purpose of this article was to review the existing literature to investigate the risk factors associated with African-American women with HIV/AIDS and identify an effective method of HIV prevention for them. A discussion of religion and African-Americans in terms of the Black church and its health promotion efforts was also included. The article concludes with a discussion of program elements of HIV prevention programs in the Black church and possible challenges faced for the programs.     

Aging with HIV: Historical and Intra-Community Differences in Experience of Aging with HIV

Gay men living with HIV/AIDS face a complex of health issues, including those associated with the aging process, long-term HIV infection (25 years or more), and side effects from Highly Active Anti-Retroviral Therapy (HAART). If aging can increase marginalization, this is more likely for the aging HIV positive gay man, who is already marginalized for being queer and living with a stigmatizing disease. This article presents findings from a study of a long-running HIV support group. It locates the members, all gay men living with HIV, in a specific historical and political context to explore how feelings of loss and the struggle to sustain community affect long-term survivors and other older HIV+ gay men. We identify specific challenges presented by aging for men who contracted HIV early in the epidemic, contrasting them with those faced by men infected with the virus later in life. While both groups appear to struggle with a vision of what life could have been, had AIDS not forced loss and change, they also celebrate the community their shared plight has enabled.     

Chapter 8: AIDS Service Organziations:

AIDS Service Organizations (ASOs) adopted a mission that included advocacy for public policy and private service agency response to the AIDS epidemic, prevention education efforts and provision of personal social services to people with AIDS (PWAs). This mission was shaped by stigmatization and marginalization of PWAs, the inadequate response of governments and health and social service agencies, the developing relationship between ASOs and diverse populations, especially communities of color, and by developments in medical research and treatments for HIV disease. ASOs thus emerged as new contexts of helping and as such had to create organizational structures appropriate for the problems faced, arrange for constructive relationships between helpers and those receiving services, and establish and maintain constructive relationships between the ASO and the larger community. Future challenges facing these new contexts of helping are discussed.     

Promoting food security and well-being among poor and HIV/AIDS affected households: Lessons from an interactive and integrated approach

Participatory and interdisciplinary approaches have been suggested to develop appropriate agricultural innovations as an alternative strategy to improve food security and well-being among HIV/AIDS affected households. However, sustainable implementation of such interactive approaches is far from easy and straight forward. This study reports of the Interactive Learning and Action (ILA) approach, a methodology for agricultural innovation which has been adapted to the context of HIV/AIDS. Role players in agriculture and health were brought together to stimulate and sustain innovation among three support groups for poor and affected households in a rural high HIV/AIDS prevalence area in South Africa. The effectiveness of the approach was evaluated using both outcome and process criteria. The results indicate that an interactive approach in which service providers/researchers engage themselves as actors to explore the livelihood system and develop appropriate solutions in joint collaboration with resource users has potential. However, it also revealed that cooperation among participants and stakeholders at the interface of agriculture and HIV/AIDS is complicated and sensitive to erosion. Of particular concern was the difficulty of mobilizing members from poor and affected households to participate and to overcome stigma and discrimination. Lessons and potential applications for the further development of interactive approaches are discussed.     

Permanency Planning for HIV/AIDS Affected Children

Abstract

As thousands of women are added to the surveillance data each year, the AIDS epidemic continues to be far reaching. And, as the number of infected women increase, there is an increase in the number of children affected by HIV. This article reviews the existing literature of AIDS affected children who have experienced or will experience the death of one or both parents as a result of HIV/AIDS. Approaches to culturally relevant, alternative permanency planning are examined which seek to serve as a guide for HIV-infected parents and human service providers.     

Chapter 4: Lesbians and HIV Disease

Lesbian women, both as individuals and as a community, are affected by the AIDS crisis. They are found among the carriers of HIV and among personal caretakers. They are among the activists, the professionals, and the volunteers whose energy and commitment drives AIDS political and service organizations. This article explores some of the problems and issues that have emerged in the relationship of lesbian women to HIV disease and to the AIDS movement. The author examines: (1) problems related to the identification and treatment of lesbians infected with HIV; (2) problems related to the absence of research and education about woman-to-woman sexual transmissions of HIV; (3) the involvement and motivation of lesbians in the development of AIDS activist and service organizations; and (4) the transformational quality of the AIDS crisis and the questions and reevaluations it has stimulated among lesbians, especially with regard to homophobia, classism, and sexism.     

AIDS: An Unconventional Perspective

Amidst the destruction of AIDS, a glimmer of hope, not necessarily for a cure but for psychological well-being, exists among many persons afflicted with the virus. A large number of HIV-infected individuals have sought and attained emotional well-being despite carrying the virus and its associated stigmas. In fact, emotional growth may not necessarily be hindered, but rather enhanced by undergoing a trauma such as an HIV/AIDS diagnosis. Some HIV-positive individuals have stated that through the process of enduring the hardships of AIDS, such as revealing their condition to others and coping with the physical repercussions of the virus, they have experienced transcendence and growth. By learning from the experiences disclosed by some of those afflicted with the virus, we, as a society, can infuse value, meaning, and growth into our own lives.     

Positive employment service - facilitating employment for people living with HIV

As treatments and therapies develop and improve, enhancing life expectancy, Human Immunodeficiency Virus (HIV) has been described by some as a long term chronic condition rather than an acute life threatening illness. As this change occurs, new issues become relevant for the person living with HIV, employment being one of these. In light of this, the Positive Employment Service was developed and implemented to explore and address some of the issues related to employment for people living with HIV. The original concept for the service was primarily focused on vocational rehabilitation; however, it soon became clear that there was a need for a prevocational service facilitating transition and adjustment to productivity roles. The service was developed using approaches from Vocational and Occupational Therapy Models of Practice. This article discusses the challenges of developing and implementing this service and explores the unique perspective that occupational therapy brings to a position of this kind.     

Why do People Disclose their HIV Status? Qualitative Evidence from a Group of Activist Women in Khayelitsha

Abstract

This study explores the bio-psychosocial context of HIV/AIDS in which eleven HIV-positive activist women from Khayelitsha negotiated the process of disclosing their HIV-positive status to significant others, specifically biological household members. The study is based on the narratives of a group of HIV-positive peer-educators in Cape Town, South Africa. The results suggest that community perceptions of HIV/AIDS are shaped by a wide variety of factors particular to the socio-cultural and political context of HIV/AIDS in South Africa. The process and outcomes of disclosure to others occurs within this shifting web of meanings, and in turn, reshapes them as people respond to the person who has just disclosed. Eight out of the eleven women disclosed to a close biological household member as these significant-others provided, or had the potential to provide, the appropriate support. Six of the eleven participants disclosed during the symptomatic phases of HIV/AIDS, while five were asymptomatic at the time. Four of the five who disclosed when asymptomatic were diagnosed while pregnant and had never experienced severe opportunistic infections. Additionally, these same four disclosed some time after diagnosis (nine months > t < two years). Of the six who disclosed in a state of ill-health, five disclosed immediately after diagnosis in order to access health-related social support. At this time, concerns regarding health and mortality superseded fears of rejection and discrimination due to AIDS-related stigma. The perceived potential benefits (social and health-related support) outweighed the perceived risks (stigmatisation and discrimination). When participants had never experienced serious illness, they disclosed in order to educate loved-ones, gain emotional support or challenge false popular perceptions of HIV/AIDS.