by Sarah Stutterheim
PhD dissertation
Few modern illnesses have been as extensively stigmatized as HIV. The consequences of HIV-related stigma are... more
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.
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