The prevalence and predictors of stigma amongst people living with HIV/AIDS in the Western Province (original) (raw)
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UNDERSTANDING HIV-RELATED STIGMA: SOCIAL AND PSYCHOLOGICAL PROCESSES
Few modern illnesses have been as extensively stigmatized as HIV. The consequences of HIV-related stigma are substantial and include hampered HIV prevention, testing delays, poor treatment adherence, psychological distress in people living with HIV (PLWH), and disrupted social interactions. This dissertation reports on the social and psychological processes involved in the production and experience of HIV-related stigma. The first part of this dissertation describes the results of comprehensive qualitative research conducted with African, Dutch Antillean, and Surinamese diaspora in the Netherlands. In Chapter 2, the beliefs that underlie and contribute to HIV-related stigma in these communities are investigated. Interviews with both HIV-positive and HIV-negative community members established that beliefs that HIV is highly contagious, that HIV is a very severe disease, and that PLWH are personally responsible for acquiring their HIV infection contribute to HIV-related stigma, as does the belief that PLWH are HIV-positive because they engage in norm-violating behavior such as promiscuity, commercial sex work, and, for Afro-Caribbean diaspora, also homosexuality. These beliefs were found to be exacerbated and perpetuated by cultural taboos on talking about HIV and sexuality. Chapter 3 describes the manifestations and consequences of HIV-related stigma in African, Dutch Antillean, and Surinamese communities, and delineates the coping strategies employed by PLWH to mitigate the negative social and psychological consequences of HIV-related stigma. In this study, HIV-related stigma was found to manifest as social distance, physical distance, words, and silence, and to have substantial psychological, social, and health-related consequences. The psychological consequences of HIV-related stigma were emotional pain, sadness, loneliness, anger, frustration, and internalized stigma. The social consequences included decreased social network size, limited social support, and social isolation, and were found to result from not only enacted stigma but also self-imposed social withdrawal. Also, poor treatment adherence was found to be a health-related consequence. In terms of coping strategies, this study established that PLWH employ both problem-focused and emotion-focused coping strategies to mitigate the negative consequences of stigma. Problem-focused coping strategies reported were selective disclosure, disengagement, affiliating with similar others, seeking social support and, to a lesser extent, activism. Emotion-focused strategies included distraction, positive reappraisal, religious coping, external attributions, disidentification, and acceptance. Chapter 4 investigates how African, Dutch Antillean, and Surinamese PLWH approach disclosure. Previous research has shown that HIV status disclosure is a reasoned process whereby the costs and benefits to oneself and to others are weighed. As such, understanding disclosure requires understanding the reasons for and against disclosure employed by PLWH. In this study, reasons for nondisclosure and disclosure were established. Reasons for nondisclosure were fear of stigmatization, having had previous negative experiences with disclosure, having observed the stigmatization of other PLWH, feeling shame, and wanting to protect others – particularly one’s children and family – from stigmatization-by-association and/or worrying, and believing that one’s HIV status is a private matter. Participants reported disclosing because they were in a close and supportive relationship, disclosure led to emotional release, disclosure could lead to emotional or financial support, they felt a perceived duty to inform, and they had a desire to educate others about sexual risk-taking. The findings suggest that stigma plays an important role in disclosure decisions among these populations. Together, the three chapters in the first part of this dissertation follow the process of stigmatization in African and Afro-Caribbean diaspora communities from the beliefs underlying stigma to the manifestations and consequences of HIV-related stigma and subsequent coping while also considering how African and Afro-Caribbean PLWH decide whether or not to disclose their HIV status. The second part of this dissertation explores some aspects of HIV-related stigma in more detail and expands the study population and sample to include all PLWH living in the Netherlands. The findings reported in this section are also, in contrast to the first part of this dissertation, quantitative in nature. Chapter 5 investigates, using a cross-sectional survey, which specific stigma experiences are most strongly related to psychological distress across a number of social settings, something that has not previously been done. Most studies investigating the psychological impact of HIV-related stigma employ an aggregate measure of stigma and, although this approach provides useful information about the psychological implications of HIV-related stigma in general, it neglects to acknowledge the possibility that some manifestations in specific settings may be psychologically more detrimental than others. As a result, this study examined participants’ experiences of 11 manifestations of HIV-related stigma in 6 social settings. Linear regression analyses were conducted to determine which setting-specific manifestations best predict psychological distress. The results showed that three manifestations in family settings, namely receiving advice to conceal one’s status, being avoided, and being treated with exaggerated kindness, and one manifestation in health care settings, namely awkward social interaction, best predicted psychological distress in PLWH, thus demonstrating that manifestations of HIV-related stigma do vary according to setting. Chapter 6 returns to the issue of disclosure and, in particular, to the debate on whether a visible or concealable stigma is more detrimental to PLWH’s psychological well-being and social lives. The study reported in this chapter investigated HIV-related stigma, psychological distress, self esteem, and social support in a sample comprising people who have concealed their HIV status to all but a selected few (limited disclosers), people who can conceal but chose to be open (full disclosers), and people who had visible symptoms that made concealing difficult (visibly stigmatized). The findings indicate that while visibly stigmatized participants and full disclosers both reported significantly more stigma experiences than limited disclosers, only the visibly stigmatized reported more psychological distress, lower self esteem, and less social support than limited disclosers. This suggests that having a visible stigma is more detrimental than having a concealable stigma. Differences in psychological distress and self esteem between the visibly stigmatized and full disclosers were mediated by social support while differences between the visibly stigmatized and limited disclosers were mediated by both social support and stigma. These findings clearly suggest that social support buffers psychological distress in PLWH. The final chapter of this dissertation, Chapter 7, is a general discussion of all research findings, both the qualitative findings acquired through research with African, Dutch Antillean, and Surinamese diaspora communities and the quantitative findings gathered through cross-sectional research with the general PLWH population in the Netherlands. This chapter not only summarizes the findings of the studies reported in this dissertation and discusses them in the context of the current literature; it also discusses the role of culture in understanding stigma, claiming that HIV-related stigma is a relatively ubiquitous phenomenon. Before concluding, this chapter reflects on the methods used to conduct the research reported in this dissertation, outlines implications of the research findings, and provides recommendations for future research.
Perceived Stigma in People Living With HIV in Qom
Journal of Family & Reproductive Health, 2017
Objective: This study aimed to report on perceived stigma by PLWH and factors that affect it. Materials and methods: A cross-sectional study was carried out on 120 PLWH in Qom, Iran from November 2015 to April 2016. Persian version of Fife and Wright's scale was used to measure perceived stigma. Results: The mean score of stigma was 73.19 ± 12.23 (range: 48-97). The means of external stigma and internal stigma were 43.70 ± 8.61 (range: 19-60), and 29.49 ± 5.32 (range: 17-40), respectively. Living in a rural areas (β = 10.341, p = 0.006), unemployment status (β = 6.910, p = 0.006), and poor support from family members (β = 4.772, p = 0.028) significantly increased the level of perceived stigma. PLWH experience a considerable level of stigma in their daily life. Mass media involvement to increase public awareness and reduce HIV related stigma need be more highlighted. Conclusion: Working with the patients' families, interventions in the rural areas and workplaces, and providin...
Determinants of Stigma Attitude Among People Living with HIV
Journal of Global Pharma Technology, 2019
Objective: Human immunodeficiency virus / acquired immunodeficiency syndrome (HIV/AIDS) is still a stigma in the community and becomes a barriers in dealing with HIV. This study aimed to identify the determinants of stigma attitude among people living with HIV/AIDS (PLWHA).Methods: This study used a cross-sectional design. Sample collection was carried out by simple random sampling involving 135 Housewife suffered by HIV in Surabaya. The independent variables were policy support, patient characteristics (including age, sex, education level, marital status, occupation, HIV status, first being diagnosed with HIV), family factors (including family burden and family resilience). The dependent variables were stigma. Data were collected using a questionnaire. The analysis used binary logistic regression with a significance level of p ≤0.05. Results: The results showed there are five factors related to stigma in PLWHA, namely policy support (p = 0.019), marital status (p = 0.039), first being diagnosed with HIV (p = 0.006), family burden (p = 0.000) and family resilience (p = 0.041). Out of five variables, only four had a significant effect on stigma, namely marital status (OR = 0.009; 95% CI 0.000-0.697), first being diagnosed with HIV (OR = 7,464; 95% CI 1,820-30,617), family burden (OR = 0.075; 95% CI 0,017-0.329), and family resilience (OR = 0.010; 95% CI 0.000-0.381).Conclusion: The determinants of stigma attitude among PLWHA include policy support, marital status, first being diagnosed with HIV, family burdens and family endurance. Tackling stigma on HIV which involves various sectors including society, family, private and government.
2006
People's attitudes towards people living with HIV/AIDS remain a major community challenge. There is a need to generate a climate of understanding, compassion and dignity in which people living with HIV/AIDS (PLWHA) will be able to voluntarily disclose their status and receive the support and respect all people deserve. However, many people experience discrimination because they have HIV/AIDS. In a certain area in Khayelitsha, a township in Cape Town, a young woman was killed after disclosing the HIV status after being raped by five men. This has become a barrier to testing, treatment, on quality of life and social responses to HIV/AIDS. While many previous studies have focused on the external stigma in the general population, there is a dearth of studies on stigma among PLWHA themselves and hence the aim of the present study was to investigate stigma attached to HIV/AIDS from the perspective of PLWHA. The focus group research method was used to collect the data. Six focus groups consisting of 8-10 people in each group were held in Khayelitsha drawn from organizations working with PLWHA and Treatment Action Campaign (TAC). Data was analyzed using discourse analysis and the PEN-3 Model was used to explain the themes that emerged from the data. Results showed that PLWHA are affected by both enacted and internal stigma related to HIV/AIDS. It was found that the experiences of discrimination and stigma often originate from the fear and perceptions of PLWHA as immoral or living dead. They suffer rejection at home, work, school and in the health care centres. Results also showed that PLWHA felt shame, guilt, hopelessness and useless. This internalized stigma leads to withdrawal, depression, not to disclose the HIV status and prevent people for testing for HIV and also affect health-seeking behaviour. However, participants who were well informed and those who were members of the support groups reported that they are coping with the illness and they are open about their HIV-status. This suggests that education efforts have been remarkably successful in changing attitudes. It is recommended that stigma reduction programmes should involve PLWHA, community leaders and the community members to be part of the planning and implementation. It is also important to look at the successful programmes already existing in the area and adapt them and also to evaluate the effectiveness. Prof. Leickness Simbayi for your support, encouragement and being patient with me until the end of this process. The Penn-State University and Human Science Research Council for providing me fellowship and the facilities which made it possible for me to finish my thesis. Chelsea Morroni for support, friendship, motivation and containment which kept me going. My husband, children and family for the inspiration, encouragement and providing me space to finish this thesis. PLWHA who participated in this study for sharing your experiences with me. Thank you for trusting me with your sensitive life stories, without you this project was not going to be possible.
Validation of the HIV/AIDS Stigma Instrument—PLWA (HASI-P)
AIDS Care, 2007
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2007
People's attitudes towards people living with HIV/AIDS remain a major community challenge. There is a need to generate a climate of understanding, compassion and dignity in which people living with HIV/AIDS (PLWHA) will be able to voluntarily disclose their status and receive the support and respect all people deserve. However, many people experience discrimination because they have HIV/AIDS. In a certain area in Khayelitsha, a township in Cape Town, a young woman was killed after disclosing the HIV status after being raped by five men. This has become a barrier to testing, treatment, on quality of life and social responses to HIV/AIDS. While many previous studies have focused on the external stigma in the general population, there is a dearth of studies on stigma among PLWHA themselves and hence the aim of the present study was to investigate stigma attached to HIV/AIDS from the perspective of PLWHA. The focus group research method was used to collect the data. Six focus groups consisting of 8-10 people in each group were held in Khayelitsha drawn from organizations working with PLWHA and Treatment Action Campaign (TAC). Data was analyzed using discourse analysis and the PEN-3 Model was used to explain the themes that emerged from the data. Results showed that PLWHA are affected by both enacted and internal stigma related to HIV/AIDS. It was found that the experiences of discrimination and stigma often originate from the fear and perceptions of PLWHA as immoral or living dead. They suffer rejection at home, work, school and in the health care centres. Results also showed that PLWHA felt shame, guilt, hopelessness and useless. This internalized stigma leads to withdrawal, depression, not to disclose the HIV status and prevent people for testing for HIV and also affect health-seeking behaviour. However, participants who were well informed and those who were members of the support groups reported that they are coping with the illness and they are open about their HIV-status. This suggests that education efforts have been remarkably successful in changing attitudes. It is recommended that stigma reduction programmes should involve PLWHA, community leaders and the community members to be part of the planning and implementation. It is also important to look at the successful programmes already existing in the area and adapt them and also to evaluate the effectiveness. Prof. Leickness Simbayi for your support, encouragement and being patient with me until the end of this process. The Penn-State University and Human Science Research Council for providing me fellowship and the facilities which made it possible for me to finish my thesis. Chelsea Morroni for support, friendship, motivation and containment which kept me going. My husband, children and family for the inspiration, encouragement and providing me space to finish this thesis. PLWHA who participated in this study for sharing your experiences with me. Thank you for trusting me with your sensitive life stories, without you this project was not going to be possible.
Development of an Instrument to Measure Internalized Stigma in Those with HIV/AIDS
Stigma has grave consequences for persons living with HIV/AIDS. Stigma hampers prevention of HIV transmission to sexual partners and to unborn babies, diagnosis, and early treatment, and negatively affects mental and physical health, quality of life, and life satisfaction. Internalized stigma of HIV/AIDS may have even more severe consequences than perceived or enacted stigma. The purpose of this study was to develop an instrument to measure internalized stigma in those with HIV/AIDS. Data were drawn from the Rural Women's Health Project. Research assistants administered structured interviews at baseline, 3 months, and 6 months. Instruments used in these analyses included a demographic data form, the Centers for Epidemiological Studies Depression Scale (CES-D), the Perceived Stigma Scale (PSS), and the Internalized Stigma of AIDS Tool (ISAT). Exploratory factor analysis confirmed that the ten items of the ISAT measure a single factor that explains 88% of the variance in the construct. Internal consistency was demonstrated by a Cronbach's alpha of .91 (Time 1), .92 (Time 2), and .92 (Time 3). Convergent validity was supported with significant positive correlations with the CES-D (rho = 0.33, p < 0.0001) and the PSS (rho = 0.56, < 0.0001). The Internalized Stigma of AIDS Tool appears to be a reliable and valid instrument to measure internalization of the stigma of HIV/AIDS. It may be of value in research and clinical assessment.
AIDS, 2009
"Objectives: Recent research has shown that experiences of stigmatization have an adverse impact on the psychological well-being of people living with HIV/AIDS (PLWHA). Most studies investigating this relationship employ an aggregate measure of stigma. Although this approach provides useful information about the psychological implications of HIV-related stigma in general, it neglects to acknowledge the possibility that some manifestations in specific settings may be psychologically more detrimental than others. The present study examines which specific stigma experiences are most strongly related to psychological distress across a number of social settings. Methods: A cross-sectional survey was administered to 667 PLWHA in the Netherlands. We examined participants’ experiences of 11 manifestations of HIV-related stigma in 6 social settings. Linear regression analyses were conducted to determine which setting-specific manifestations best predict psychological distress after controlling for marital status, education and health status. Results: Three manifestations in family settings, namely receiving advice to conceal one’s status, being avoided and being treated with exaggerated kindness, and one manifestation in health care settings, namely awkward social interaction, best predicted psychological distress in PLWHA. Conclusions: Manifestations of HIV-related stigma vary according to setting. Certain manifestations in specific social settings impact the psychological well-being of PLWHA more than others. In this study, certain experiences of stigmatization with PLWHA’s families and in health care settings were more strongly related to psychological distress than experiences occurring in other social settings. These findings suggest that stigma reduction interventions focusing on these influential settings may benefit the psychological well-being of PLWHA."