The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer

Does the impact of stigma on the self differ by illness type? This study focuses on a comparison of the effects of the stigma associated with HIV/AIDS and cancer on self-esteem, body image, and personal control. We test the hypothesis that individuals' perceptions of stigma account for significant differences in the impact of an illness on the self. We examine four dimensions of perceived stigma: social rejection, internalized shame, social isolation, and financial insecurity. In turn, we consider how these dimensions medicate the effects of HIV/AIDS and cancer. Our sample includes 130 persons with HIV/AIDS and 76 persons with cancer. We control for illness severity by including a measure of functional health status that is based on participants' subjective perspectives of the severity of their symptomatology. Our findings provide additional support for modified labeling theory; however, our findings also point to the dimensionality of stigma and its differential negative impact on particular elements of the self, regardless of illness type.     

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.     

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.     

AIDS and Social Work: Curricula Development in an Epidemic

Abstract

The need for skilled social workers in the AIDS epidemic cannot be ignored. New graduates and current social work students need to understand complex biopsychosocial, ethical and political issues in order to provide effective, timely and appropriate services to persons with AIDS and their significant others. This article describes a framework for developing comprehensive, versatile curricula which adequately prepare students to confront the unprecedented challenges created by this epidemic.     

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.     

Uncertainty and the lives of persons with AIDS

This article uses interview data to explore how 23 gay and bisexual men who had AIDS were affected by and managed uncertainty. Before diagnosis these individuals had to find ways to cope with uncertainty about their risk of contracting AIDS and about their initial symptoms. After diagnosis they had to find answers to their questions about why they contracted this disease, whether they would be able to function in the short run, whether their illness would kill them, and whether they would be allowed to live and (if death was unavoidable) to die with dignity. The data suggest that persons with AIDS respond to the uncertainties of their illness by attempting to assert as much control as possible over their lives, through such divergent strategies as seeking and avoiding knowledge about their illness.     

Service user or service provider? How social work and human services students integrate dual identities

Students studying undergraduate social work and human services (SWHS) degrees may have used health and human service agencies, before and during their university education. Using services provides them with insights that are useful for professional practice. However, this article identifies that they experience a fear of shame and stigma revealing this during their studies. In examining interview data from 15 undergraduate SWHS students they recounted how they integrated their experience of being a service user into their professional development. It is argued that insider knowledge of services can provide them with valuable insights for practice. Students spoke about how positive experiences motivated them to study and provided models of effective practice, exemplifying its potential power to assist those in need. Negative experiences of service use can also be beneficial for learning what ‘not to do’. Although students found the experience of service use invaluable, they felt it was never acknowledged within the curriculum. Consequently, students interviewed in this study identified service users as ‘others’. They feared disclosing their own use of services due to perceived shame and stigma. Failing to provide opportunity for students to integrate their service user experience into their professional development creates a false dichotomy which does not acknowledge the intersection of these dual identities.     

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.     

Asian Girls are Prettier: Gendered Presentations as Stigma Management among Gay Asian Men

Despite the well‐documented cases of racism toward gay Asian men in the gay community, there is currently little research on how gay Asian men manage racial stigma. In this article, I examine the racial stigma management strategies of gay Asian men. I examine the nature of gay racial stigma toward gay Asian men and find that they use gendered presentations to counter the stereotype that they are more feminine than gay white men. While some gay Asian men engender a hypermasculine presentation, others use a hyperfeminine presentation to trade a more‐stigmatized status for one that is less stigmatizing. More important, these men actively embrace stereotypes to successfully make these transitions. This article demonstrates that stigmatized groups can manage stigma by highlighting their spoiled identities rather than attempting to minimize them.     

The Mark of Madness

Abstract

Stigma is a major barrier to recovery for individuals with mental illnesses. It interferes with community living and attainment of resources and goals and damages self-esteem and self-efficacy. Given that social workers provide much of the mental health care to individuals with mental illnesses, and that actions to reduce stigma support the social justice mission of social work, addressing stigma should be a focus of social work interventions. The goals of this paper are to explore stigma theory in general and for individuals with serious mental illnesses, discuss the implications of this stigma analysis for social work, and make recommendations for action in both practice and research.     

Discrimination against South African adolescents orphaned by AIDS

This article describes the discrimination against adolescents orphaned by AIDS. A qualitative phenomenological approach using reflective diaries was used to extract how this population is discriminated on. Fifteen adolescents ages 14 to 18 living in an urban area in South Africa participated in the study. Data were collected as part of a larger study in which a peer-based mental health intervention was designed for use with adolescents orphaned by AIDS. Colaizzi's seven stages were used to analyze the data from the reflective diaries. Analysis revealed that adolescents orphaned by AIDS experienced physical, social, and institutional expressions of stigma leading to discrimination. Adolescents were discriminated on by peers, caregivers, and teachers. The results of this study show that adolescents orphaned by AIDS face discrimination; further studies on the topic with a larger sample are needed to verify these findings.     

The Dialectics of Depression

This article attempts to illuminate the phenomenology of clinical depression by making it sociologically intelligible. It proceeds from the fundamental premise of the sociology of medicine that there is a dialectical relationship between illness and social experience. Throughout, it explores the paradox that depressed persons greatly desire connection while they are simultaneously deprived of the ability to realize it. In-depth interview data from 35 persons diagnosed and treated for clinical depression suggest that four factors interact synergistically to deepen depression's isolation: (1) the intrinsic character of the emotional experience of depression, (2) the failure of individuals to have a clear vocabulary for understanding their own predicament, (3) the incomprehensibility of depression to “normals,” and (4) the stigma attached to “going public” with one's problem. The article concludes by outlining a research agenda that links the incidence of depression to structural factors diminishing social connection.     

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.     

Teaching Note—Oppression of People With Mental Illnesses: Incorporating Content Into Multiple-Issue Diversity Courses

Many social workers practice in settings serving people with mental illnesses, but social work education in the United States has given minimal attention to helping students understand the systemic nature of prejudice and discrimination experienced by this population. Some courses address prejudice (stigma) toward people with mental illnesses, but a critical consideration of systemic oppression appears to be lacking. We explain how an oppression framework used to understand the systemic nature of racism, sexism, and other forms of oppression is useful in illuminating experiences related to (perceived) mental health status. We offer suggestions for incorporating content into courses that focus on diversity and oppression with the goal of preparing students to engage in antioppressive practice with people who have mental illnesses.     

Boosting strategies. Enhancing the self-esteem of individuals with catastrophic illnesses and injuries

This qualitative study used grounded theory methods to determine how individuals were able to live with catastrophic illnesses and injuries. Twenty-eight participants were interviewed for stories of how they endured their circumstances. Although several strategies were used, this article describes a strategy entitled "boosting," which outlines the affected individuals' efforts to improve their self-esteem, which helped them bear their circumstances. Boosting has some relationship to social comparison theory. Implications for nurses and the importance of awareness of this communication need for patients are discussed.     

Exploring Epistemologies: The Debate Continues

ABSTRACT

Stigma is a significant barrier to recovery and full community inclusion for people with mental illnesses. Social work educators can play critical roles in addressing this stigma, yet little is known about their attitudes. Social work educators were surveyed about their general attitudes about people with mental illnesses, attitudes about practice with people with mental illnesses, and attitudes about students with mental illnesses. On average, educators’ general and practice attitudes were not negative. However, respondents did view a student with a mental illness differently from a “typical social work student.” Findings suggest that we, as social work educators, must raise our awareness and address our own attitudes to support students and uphold our social work values.     

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.     

The Second Closet: A Qualitative Study of HIV Stigma Among Seropositive Gay Men in a Southern U.S. City

ABSTRACT

Objectives: Stigma connected with HIV/AIDS has decreased considerably since the early epidemic yet affects those living with HIV in many ways. Little research, particularly qualitative research, concerning HIV stigma from the perspective of gay men has emerged. The present qualitative study aimed to fill this evidence gap by examining how HIV stigma is perceived and experienced by gay men who have become HIV-infected and how they respond to this stigma. Methods: Thematic analysis of 19 gay men's narratives identified six main themes. Results: Encountering HIV stigmatization was common and was linked to the physical stigmata identifying respondents as HIV-positive. Overwhelmingly, they found stigmatization to be most intensely felt within gay communities. One profound theme was internalized HIV stigma, referring to respondents’ internalized negative feelings about their HIV status. A related theme was the closeted nature of HIV. Lastly, regarding how the men dealt with the HIV diagnosis and experiences of HIV stigma, a theme of adaptation became clear. Conclusions: Although exploratory, the results can serve as a beginning framework for understanding and assisting seropositive gay men who experience HIV stigma. The findings are important because it is realistic to expect that in a climate in which HIV has become increasingly invisible and closeted and in which infections are on the rise, gay and bisexual men will be increasingly affected and infected by HIV.     

Recognizing difference: in/visibility in the everyday life of individuals with facial limb absence

People who lack part(s) of their face have a visibly different appearance both due to their facial difference itself and the medical aids that they use to cover it (e.g. prostheses, bandages). In this article, we draw on interviews with affected individuals in order to investigate how visible difference features in their everyday experience. The visibility of their facial difference, we show, comes into play as they interact with various others in the contexts of their daily life. However, respondents’ visibility manifests in different ways, depending on whether they cover or uncover their facial difference. These different modes of visibility make for distinct ‘visibility experiences’, as participants meet others who notice – or fail to notice – their atypical appearance. By exploring these experiences, our article provides insights into the role of visibility in interviewees’ everyday life, and demonstrates how they actively negotiate their social recognition within encounters with various others.     

From disability to ability: changing the phrasing of the debate

Persons with disabilities have endured discrimination and live under social apartheid. While enlightened people recognise the role that society has in disabling people with impairments, there remains a struggle to remove the negative stigma associated with this form of social diversity. There is no silver bullet that will enable persons with disabilities to exercise their human rights as full citizens. One strategy to assist in this struggle is the use of language. This paper focuses on how language can be utilised in the struggle against oppression. This paper reconsiders how disability discrimination is conceived and labelled. There is no uniformly accepted label to describe the discrimination and oppression that is explained by the social model or the non-radical social model. This paper explores how the labels of disableism and ableism have emerged to explain this concept. This paper analyses these terms and argues for the adoption of ableist nomenclature.