Stigma Management Among Gay/Bisexual Men with HIV/AIDS

People with HIV infection are subjected to prejudice, discrimination and hostility related to the stigmatization of AIDS. To manage the stigma of their disease, they mount complex coping strategies. This paper reports results from a qualitative study that examined gay/bisexual men's experiences of living with HIV infection. Unstructured interviews from a diverse sample of 139 men were analyzed to examine how men coped with AIDS-related stigma. We discerned a variety of stigma management strategies that could be arranged along a continuum from reactive to proactive based on the extent to which they implicitly accepted or challenged the social norms and values that underlie the stigmatization of HIV/AIDS. Reactive strategies to cope with stigma involve defensive attempts to avoid or mitigate the impact of stigma, but imply acceptance of the underlying social norms and values that construct the stigma. Examples of reactive strategies include hiding one's HIV status, presenting one's illness as a less stigmatizing one (e.g., cancer), or distancing one's self from more damaging aspects of AIDS-stigma (e.g., attributing infection to blood transfusion). Proactive strategies challenge the validity of the stigma and imply disavowal and resistance of the social norms and values that underlie the stigma. Examples of proactive strategies include engaging in public educational efforts that address misperceptions about HIV transmission and social activism to change the social and political conditions that affect PWA/HIV.     

Chapter 12. Families Caring for Persons with HIV/AIDS

SUMMARY

The extent to which family members are willing and able to assist with daily activities and provide emotional support can greatly affect the quality of life for persons with chronic illness. In the case of HIV/AIDS, the burdens of symptom management and medication are amplified by social stigma. This chapter provides a summary of the physical, psychological, social, and spiritual issues associated with HIV/AIDS along with approaches to assessment and treatment.     

Community reaction to persons with HIV/AIDS and their parents: an analysis of recent evidence from Thailand

We systematically examine community reaction to persons living with HIV/AIDS (PHAs) and their older parents in Thailand. We focus on parents as well as PHAs because parents are major providers of care for their ill adult children. Our analyses are based on several sources of recently collected survey and qualitative data from a wide range of perspectives. We find important variations in community reaction to PHAs and their families, but overall these reactions are much more positive than is widely assumed. We conclude that much existing research on community reaction to AIDS neglects both a rich body of social theory on stigma and a strong tradition of population-based empirical research in sociology. Much existing research also fails to adequately distinguish between key aspects of the social settings where most AIDS cases occur and the social settings where most of the stereotypes surrounding AIDS-related stigma have originated. A closer marriage between empirical and theoretical approaches to social stigma is required to advance our understanding of this critically important dimension of the AIDS epidemic.     

Living with the stigma of AIDS

This article uses interview data to explore how 23 gay and bisexual men who had AIDS were affected by and managed stigma. The article describes how stigma affects the relationships of persons with AIDS to their families, friends, lovers, colleagues, and health care providers. It explores how persons with AIDS avoid or reduce stigma by concealing their illnesses, learning when and to whom they should reveal their illnesses, changing their social networks, educating others about AIDS, developing nonstigmatizing theories of illness causation, and using bravado to convince others that they are still functioning social beings.     

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.     

Marketing the Damaged Self: The Construction of Identity in Advertisements Directed Towards People with HIV/AIDS

This paper explores the identities projected in advertisements directed towards HIV positive individuals and people with AIDS. Fifty such advertisements were collected from three popular American magazines for gay men over a period of seven months. Analysis of the ads reveals a paradoxical presentation of people with HIV/AIDS, which offers simultaneous conflicting images of hope and fear, power and weakness, innocence and guilt. An interactive sociolinguistic model through which this contradictory discourse might be understood is presented, drawing on Goffman's insights on stigma management and the presentation of the self in social interaction. Advertisements directed towards people with HIV/AIDS, it is suggested, present a contradictory discourse in which the advertisers are positioned as 'the wise', offering to mediate the conflicting identities of the stigmatized. The identity values enacted in this contradictory discourse are further measured against American conceptions of communication and the self as observed by Carbaugh and others. The possible consequences of these positionings on the roles made available to people with HIV/AIDS in the wider social context are discussed.     

HIV/AIDS stigma manifestations during clinical interactions with MSM in Puerto Rico

HIV/AIDS stigma can have detrimental effects on physician/patient interactions when manifested by health professionals. Unfortunately, HIV/AIDS stigma is usually manifested in an intersectional manner with other preexisting stigmas, including stigma toward men who have sex with men (MSM). Therefore, our study aimed to examine the behavioral manifestations of HIV/AIDS stigma among physicians in training during simulated clinical interactions with MSM, and explore the interrelation between HIV/AIDS stigma attitudes and behaviors. We implemented an experimental design using Standardized Patient simulations with a sample of 100 physicians in training in Puerto Rico. Results show a significant difference in the two groups’ means (p?<?.001), with a higher number of stigma behaviors in the HIV MSM patient condition (M?=?6.39) than the common cold control condition (M?=?5.20). Results evidence that stigma manifestations toward MSM with HIV may continue to be an obstacle for public health in Puerto Rico, and that medical training to prevent stigma is still needed.     

Analysis of HIV Caregivers in South Africa: A South African Depression and Anxiety Group

ABSTRACT

The severity of the HIV/AIDS epidemic in South Africa is well documented. However, little is known regarding the well-being of caregivers of persons with HIV/AIDS in South Africa. This study sought to evaluate characteristics, similarities and differences between groups of HIV caregivers in rural, semi-rural, and urban areas of South Africa. Interesting trends were noticed in the areas of suicidality, alcohol abuse, and intimate trauma. Findings indicate a substantial need for further study in the area of suicidality, denial of or lack of desire to know HIV status and the accompanying diagnostic stigma, and the need for a support network within lay caregivers.     

Developing a community-level anti-HIV/AIDS stigma and homophobia intervention in new York city: The project CHHANGE model

HIV/AIDS stigma and homophobia are associated with significant negative health and social outcomes among people living with HIV/AIDS (PLWHA) and those at risk of infection. Interventions to decrease HIV stigma have focused on providing information and education, changing attitudes and values, and increasing contact with people living with HIV/AIDS (PLWHA), activities that act to reduce stereotyped beliefs and prejudice, as well as acts of discrimination. Most anti-homophobia interventions have focused on bullying reduction and have been implemented at the secondary and post-secondary education levels. Few interventions address HIV stigma and homophobia and operate at the community level. Project CHHANGE, Challenge HIV Stigma and Homophobia and Gain Empowerment, was a community-level, multi-component anti-HIV/AIDS stigma and homophobia intervention designed to reduce HIV stigma and homophobia thus increasing access to HIV prevention and treatment access. The theory-based intervention included three primary components: workshops and trainings with local residents, businesses and community-based organizations (CBO); space-based events at a CBO-partner drop-in storefront and “pop-up” street-based events and outreach; and a bus shelter ad campaign. This paper describes the intervention design process, resultant intervention and the study team’s experiences working with the community. We conclude that CHHANGE was feasible and acceptable to the community. Promoting the labeling of gay and/or HIV-related “space” as a non-stigmatized, community resource, as well as providing opportunities for residents to have contact with targeted groups and to understand how HIV stigma and homophobia relate to HIV/AIDS prevalence in their neighborhood may be crucial components of successful anti-stigma and discrimination programming.     

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.     

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.     

How to reduce the risk of HIV infection for the seriously mentally ill.

1. The professional literature increasingly indicates the need to educate persons with serious mental illness regarding HIV/AIDS. 2. Community-based organizations currently responding to the AIDS epidemic are poorly equipped to respond to the special needs of persons with serious mental illness. 3. Persons with serious mental illness are concerned by HIV/AIDS. Some, however, will incorporate education into their pathology via delusional systems or misunderstandings. 4. Effective programs for this population can be developed following community health nursing principles.     

Redefining Sex and Intimacy: The Sexual Self-Images,Outlooks, and Relationships of Gay Men Living with HIV/AIDS

This paper examines how gay men living with HIV disease come to terms with the profound sexual implications of their illness. Based on interviews with 25 gay men diagnosed with HIV/AIDS, this paper highlights (a) the disruptions that these men experience in their sexual feelings and self-images as a result of their illness; (b) the challenges they encounter in negotiating and sustaining sexual relationships; (c) the declines they experience in their sexual attractiveness, desire, and capacities as their illness advances; and (d) the changed meanings they give to sex and self as they come to terms with the erotic implications of their illness and try to preserve valued, intimate identities. In focusing on these themes, this paper offers an “insider's view” into key dimensions of the moral experience of gay men with HIV/AIDS. It also illustrates how the moral experience of these men shifts over the course of their illness, especially in response to the changes and challenges that arise in their intimate relationships and subcultural networks. On a broader, analytic level, this paper addresses a research question that has been neglected in previous studies of the experience of illness—that is, how does serious illness affect the sexuality of diagnosed individuals, particularly their construction of sexual and intimate identities? Through examining this question, this paper contributes to and extends the growing interactionist literature on the consequences of illness for self.     

Training Mental Health Professionals on Ethical Issues and HIV/AIDS

This report describes the importance of ethics training for mental health professionals working with persons infected or affected by HIV/AIDS. We first describe three major ethical dilemmas (confidentiality, duty to warn, and suicide) faced by mental health providers serving persons with HIV/AIDS, and the legal and clinical aspects of these dilemmas. We present data from the South Texas AIDS Training Project describing the types of mental health professionals who have attended workshops on ethical issues and HIV/AIDS. Finally, we report observations about the impact of the ethics training sessions on the participants' knowledge and attitudes.     

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.     

Identities and Identity Transformations Among Persons with HIV Disease

Drawing on a pendulum model of identity transformation (i.e. viewing identity as a fluid, dual-directional construct), the processes by which a mostly gay sample of persons with HIV disease develop and adopt HIV-related identities is examined. Through in-depth interviews with 63 persons living with HIV disease in Kentucky, Ohio, and Indiana, individual experiences and responses to illness are explored. Recognition of biographical disruptions and critical milestones in identity transformations are discussed and presented as the events that constitute the alteration of identity. Three critical milestones are identified in the transformation process: testing for HIV antibodies, disease validation and diagnosis, and disclosure of HIV positivity. Responses to these milestones—catastrophizing, minimizing and ignoring, and adaptation—are presented as primary constitutive processes that lead individuals through the formulation of an HIV identity. Resulting, transformed identities are those of being HIV Positive, Living with HIV, and as a Person with AIDS. Identities are examined as fluid constructs, drawing upon aspects of both the physiological and social aspects of self.     

‘Pain on Top of Pain,Hurtness on Top of Hurtness’: Social Discrimination,Psychological Well-Being,and Sexual Risk Among Women Living With HIV/AIDS

ABSTRACT

This qualitative study explored how a subsample (n = 26) of participants in Protect and Respect (N = 184), a safer-sex intervention for women living with HIV/AIDS (WLH/A), discussed their experiences of social discrimination and the impact of discrimination on their lives, psychological well-being, and risk behaviors during group intervention sessions. The majority of participants was Black (83%), earned less than $10,000 per year (80%), and acquired HIV through heterosexual sex (58%). Analyses demonstrated that social discrimination manifested in the women's lives as poverty, HIV/AIDS-related stigma, and gender inequality. These experiences caused intense psychological distress and limited WLH/A's ability to implement the safer-sex skills that they learned during the intervention. We discuss the applied and theoretical implications of our findings, advocating for HIV and sexual risk-reduction interventions that are based on an ecological framework that addresses holistically the individual, relational, and sociostructural factors that affect women's sexual risk behaviors.     

Modeling processes in recovery from mental illness: relationships between symptoms, life satisfaction, and self-concept

For persons with severe mental illness, controlling symptoms, regaining a positive sense of self, dealing with stigma and discrimination, and trying to lead a productive and satisfying life is increasingly referred to as the ongoing process of recovery. Drawing on psychiatric-medical and stress-social support models, and theories of self-concept and stigma, this study examines social-psychological processes in recovery from mental illness. Using longitudinal questionnaire data from 610 persons in self-help groups and outpatient treatment, 1 estimate a series of models of the relationships between key elements identified as part of the recovery process: symptoms, self-concept, and life satisfaction. The results show that these elements affect each other in a reciprocal manner. Moreover, findings indicate a key role for self-esteem, which mediates the effect of life satisfaction on symptoms. The study suggests a general framework for examining processes involved in recovery from mental illness.     

Anatomy of Fear: Mead's Theory of the Past and the Experience of the HIV/AIDS “Worried Well”

The HIV/AIDS “worried well”—persons who believe themselves infected with HIV in the absence of any objective medical proof—have been well documented in the psychological literature but not the sociological literature. Adopting a symbolic interactionist perspective, I use George Herbert Mead's theory of the past to conceptualize the HIV/AIDS worried well experience by analyzing narratives written by persons who have been worried well. Empirically, I provide sociological evidence of the existence of the HIV/AIDS worried well. Theoretically, I expand concepts derived from studies of persons with chronic illness to the worried well and speak to the influence of Mead's theory of the past to sociology.     

ECONOMIC AND OTHER SOCIETAL DETERMINANTS OF THE PREVALENCE OF HIV: A Test of Competing Hypotheses

The spread of human immunodeficiency virus (HIV) is believed to result from HIV-infected individuals who are unaware of their infection and, thus, the possible consequences of their sexual behavior for others. However, differential rates of HIV infection between countries may reflect a different set of circumstances. We obtained data from the World Bank and several other sources to test eight alternative explanations for the global differences in prevalence of HIV infection: (1) economic underdevelopment, (2) inadequate public health care, (3) insufficient media, (4) political instability, (5) overurbanization, (6) social inequity, (7) religion, and (8) region. Our regression findings showed that income inequality and political instability had statistically significant positive effects on HIV/AIDS prevalence and that gender equality had a negative effect on HIV/AIDS prevalence. Religion and region were also important predictors, as countries that were predominately Muslim and Christian Orthodox generally had lower prevalence of HIV/AIDS, whereas West Africa, Central Africa, and Southern Africa had a higher prevalence of HIV/AIDS. None of the public health and media indicators were statistically relevant.