Prevalence of HIV-related stigma manifestations and their contributing factors among people living with HIV in Sweden - a nationwide study.

BACKGROUND: With access to  antiretroviral therapy (ART) HIV infection is a chronic manageable condition and non-sexually transmissible. Yet, many people living with HIV still testify about experiencing HIV-related stigma and discrimination. It is well-documented that HIV-related stigma and discrimination continue to be critical barriers to prevention, treatment, care and quality of life. From an individual stigma-reduction intervention perspective, it is essential to identify individual and interpersonal factors associated with HIV-related stigma manifestations. To address this issue and to expand the literature, the aim of this study was to assess the prevalence of HIV-related stigma manifestations and their associated factors among a diverse sample of people living with HIV in Sweden. METHOD: Data from 1 096 participants were derived from a nationally representative, anonymous cross-sectional survey "Living with HIV in Sweden". HIV-related stigma manifestations were assessed using the validated Swedish 12-item HIV Stigma Scale encompassing four HIV-related stigma manifestations: personalised stigma, concerns with public attitudes towards people living with HIV, concerns with sharing HIV status, and internalized stigma. Variables potentially associated with the HIV-related stigma manifestations were divided into four categories: demographic characteristics, clinical HIV factors, distress and ART adherence, and available emotional HIV-related support. Four multivariable hierarchical linear regression analyses were employed to explore the associations between multiple contributors and HIV-related stigma manifestations. RESULTS: The most dominating stigma feature was anticipation of HIV-related stigma. It was manifested in high scores on concerns with sharing HIV status reported by 78% of the participants and high scores on concerns about public attitudes towards people living with HIV reported by 54% of the participants. High scores on personalised stigma and internalized stigma were reported by around one third of the participants respectively. Between 23 and 31% of the variance of the four reported HIV-related stigma manifestations were explained mainly by the same pattern of associated factors including female gender, shorter time since HIV diagnosis, feelings of hopelessness, non-sharing HIV status, and lack of available emotional HIV-related support. CONCLUSION: The most dominating stigma feature was anticipation of stigma. Female gender, shorter time since HIV diagnosis, feelings of hopelessness, non-sharing HIV status, and lack of available emotional HIV-related support constituted potential vulnerability factors of the four HIV-related stigma manifestations. Our findings highlight the vital necessity to support people living with HIV to increase their resilience to stigma in its different forms. Exploring associated factors of HIV-related stigma manifestations may give an indication of what circumstances may increase the risk of stigma burden and factors amenable to targeted interventions. As individual stigma-reductions interventions cannot be performed isolated from HIV-related stigma and discrimination in society, a key challenge is to intensify anti-stigma interventions also on the societal level.

Hopelessness and HIV infection: an exploratory study with a gender-specific perspective.

BACKGROUND: An understudied psychological response to HIV-related stressors among people living with HIV is hopelessness. Hopelessness is the expectation that things will not improve and feeling helpless to change one's current situation. The aim of this study was to assess prevalence and levels of hopelessness and its direct and indirect contributors in people living with HIV in Sweden. METHODS: Participants included 967 women and men from the "Living with HIV in Sweden" cross-sectional study with available data regarding hopelessness measured by the Beck Hopelessness Scale. Binary and multiple logistic regression analyses were used to determine direct and indirect factors that may contribute to feelings of hopelessness. Path analyses were used to assess the underlying structure of hopelessness. All analyses were conducted by gender. RESULTS: Almost half the participants reported moderate to severe hopelessness. There were no differences in frequency of feeling hopeless or level of hopelessness by gender or sexual orientation. Dissatisfaction with finances, dissatisfaction with physical health, and low HIV-related emotional support were found to be directly associated with hopelessness for both women and men. Although having some indirect factors in common, unemployment and HIV stigmatization, women and men had different underlying structures of hopelessness. CONCLUSIONS: Our findings are important to HIV clinicians in identifying those at risk of hopelessness from a gender perspective in order to reduce preventable psychological distress among people living with HIV.

Towards a new understanding of HIV-related stigma in the era of efficient treatment- A qualitative reconceptualization of existing theory.

AIM: To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework. DESIGN: Qualitative study using interviews and a framework approach to analysis. METHODS: People living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach. RESULTS: Fifteen participants (eight women and seven men, aged 30-64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature. CONCLUSIONS: The HIV stigma framework could benefit from revision for people living with virally suppressed HIV. IMPLICATIONS: The present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.

Stigma reduction interventions in people living with HIV to improve health-related quality of life.

As the UNAIDS 90-90-90 targets for people living with HIV are increasingly being reached in many contexts, health-related quality of life, the so-called fourth 90, warrants special attention. HIV-related stigma and discrimination are major barriers for overall health-related quality of life despite impressive clinical and virological improvements in HIV care. There is a scarcity of well designed intervention studies that document stigma reduction in people living with HIV and few studies that specifically assess the effect of stigma on health-related quality of life. Further, few interventions target discrimination from providers outside of HIV-specific care or involve people living with HIV in both the design and implementation. Lastly, evidence on methods to reduce stigma in several underepresented key populations and geographical regions is insufficient and research on intersectional stigma (ie, the convergence of multiple stigmatised identities) needs further attention.

Beyond viral suppression: the quality of life of people living with HIV in Sweden.

Sweden has one of the best HIV treatment outcomes in the world and an estimated 95% of all diagnosed people living with HIV are virally suppressed, but the quality of life (QoL) is understudied. The aim of this study was to examine the associations between variables within sociodemographic, behavioural, clinical, psychological, sexual life, social support and personal resource component and the QoL of people living with HIV in Sweden. Data were derived from a cross-sectional, nation-wide survey completed by 15% (n = 1096) of all people living with HIV and collected at 15 infectious disease clinics and 2 needle exchange sites during 2014. Ordinal univariate and multivariate logistic regression analyses were used to examine associations between potential contributors and QoL. Respondents reported high QoL: 63% rated their QoL 7 or higher on a scale ranging from 0 to 10. QoL was independent of gender, age, mode of HIV transmission and country of origin. Lower QoL was associated with recent homelessness, hazardous alcohol consumption, comorbidities, treatment side-effects, HIV-related physical symptoms, hopelessness, negative self-image, sexual dissatisfaction, and negative changes in sex life after HIV. The QoL of people living with HIV in Sweden was high overall, but still significantly influenced by HIV.