HIV-related stigma in the era of efficient treatment : conceptualization, measurement and relations to health-related quality of life

The studies included in this thesis examined experiences of HIV-related stigma among persons living with HIV in the current era of efficient treatment. Background Human immunodeficiency virus (HIV) has been a stigmatized condition since the beginning of the pandemic and people living with HIV who experience HIV-related stigma have been found to have lower health-related quality, also after the introduction of efficient treatment. HIV-related stigma has also been found to be a barrier to treatment and care. HIV has changed from being a deadly disease to a chronic condition where treatment is generally available, and people with efficient treatment are at extremely low risk of transmitting HIV to others. It is, however, unknown how people who are virally suppressed experience stigma related to HIV, and if stigma has consequences for their health-related quality of life. Aim The overall aim of this thesis was to study self-reported stigma among people living with HIV in Sweden in the current era of efficient treatment. Further, the aim was to examine validity of the HIV stigma scale and to test the HIV stigma framework in a Swedish context where treatment is generally available. Methods For measurement of experiences of HIV-related stigma we evaluated a Swedish version of the HIV stigma scale in a sample of 193 persons living with HIV in Sweden (44% female) (Paper I-III). Psychometric properties of the HIV stigma scale was also analyzed using data from people living with HIV in the United States and South India. The HIV stigma scale were then used, together with measures of health-related quality of life and adherence to treatment, to test hypothesized associations between stigma and lower health-related quality of life (as proposed in the HIV stigma framework by Earnshaw and Chaudoir [1]) for people living with HIV in a Swedish context (Paper IV). The experience of HIV-related stigma was explored using framework approach in analyzing individual interviews with 15 persons who were virally suppressed (8 women, 7 men) (Paper V). Health-related quality of life was compared to a general Swedish population and to a sample of men living with HIV 19931995 (not included in paper I-V). Results The HIV stigma scale was found to be valid in general for measurement of stigma in the Swedish context, although some items, mostly belonging to the subscale Disclosure concerns had questionable psychometric properties (Paper I-III). To have disclosure concern was the aspect of stigma that was prominent among people living with HIV in Sweden (64% had disclosure concerns to a higher extent). The hypothesized relations in the HIV stigma framework was not confirmed in the Swedish context except for associations between internalized stigma and lower emotional wellbeing, and anticipated stigma and lower physical functioning (Paper IV). People who were virally suppressed did not think about their HIV much in general. Still, some had been treated badly because of their HIV and they anticipated rejection or labeling if their HIV got known to others (Paper V). The health-related quality of life was found to be lower for people living with HIV in Sweden than for a Swedish general population, and equally low as for people living with HIV in Sweden 20 years ago. Conclusion Although Sweden is in the front line regarding treatment, findings in this thesis indicate that the health-related quality of life seems not to have improved for people living with HIV in Sweden. HIV is still a stigmatized condition, even for persons who are virally suppressed. A majority of people living with HIV in Sweden have not experienced enacted stigma, but it is common to have concerns about when and to whom you should disclose your HIV. LIST OF SCIENTIFIC PAPERS I. Lindberg M, Wettergren L, Wiklander M, Svedhem-Johansson V, Eriksson LE, (2014) Psychometric Evaluation of the HIV Stigma Scale in a Swedish Context, PLoS ONE, 9(12): 16 II. Reinius M, Wettergren L, Wiklander M, Svedhem V, Ekström AM, Eriksson LE, (2017) Development of a 12-item short version of the HIV Stigma Scale, Health and Quality of Life Outcomes, 15(1): 115 III. Reinius M, Rao D, Manhart L, Wiklander M, Svedhem V, Pryor J, Mayer R, Gaddist B, Kumar S, Mohanraj R, Jeyaseelan L, Wettergren L, Eriksson LE, (2018) Differential item functioning for items in Berger’s HIV stigma scale – an analysis of cohorts from Indian, Swedish and US contexts, Quality of Life Research, DOI 10.1007/s11136-018-1841-4 IV. Reinius M, Wiklander M, Wettergren L, Svedhem V, Eriksson LE, (2018) The relationship between stigma and health-related quality of life in people living with HIV who have full access to antiretroviral treatment – an assessment of Earnshaw and Chaudoir’s HIV stigma framework using empirical data, AIDS and Behavior, DOI 10.1007/s10461-018-2041-5 V. Reinius M, Zeluf G, Svedhem-Johansson V, Wettergren L, Wiklander M, Eriksson LE, When the virus is undetectable – a reconceptualization of existing theory towards a new understanding of HIV-related stigma in the current era of efficient treatment, In manuscript CONTENTS 1 Background . 1 1.1 HIV history –from a western perspective . 1 1.2 Swedish media reports during the 1980’s . 1 1.3 Swedish laws and regulations . 1 1.4 Knowledge and attitudes regarding HIV among the Swedish population . 2 1.5 HIV in the human body . 2 1.5. 1 Routes of transmission . 3 1.5. 2 HIV and the immune system . 4 1.6 Antiretroviral treatment . 4 1.6. 1 Risk of HIV transmission when persons are virally suppressed . 5 1.6. 2 A residual problem in Sweden with late HIV diagnosis . 5 1.7 A global perspective . 6 1.8 The Swedish context . 6 1.9 Central concepts and frameworks . 6 1.9. 1 HIV-related stigma . 6 1.9. 2 The HIV stigma framework . 8 1.9. 3 Berger’s HIV stigma scale . 10 1.9. 4 Disclosure . 11 1.9. 5 Health-related quality of life . 12 1.9. 6 Associations between HIV-related stigma and health-related quality of life . 12 1.9. 7 Associations between HIV-related stigma and antiretroviral adherence . 12 1.10 Recentstudies about the life situation of people living with HIV in Sweden . 13 1.11 To live with HIV when HIV has been “normalized” . 14 2 Aims . 15 3 Methods . 16 3.1 General study design . 16 3.2 Instruments . 17 3.2. 1 The Swedish version of the HIV stigma scale . 17 3.2. 2 SWED-QUAL . 17 3.3 Data sources . 18 3.3.1 Quantitative data . 19 3.3.2 Qualitative interviews . 22 3.3.3 Data retrieved for secondary analyses . 22 3.3.4 Data used for comparison . 23 3.4 Participants . 23 3.4. 1 Paper I . 23 3.4. 2 Paper II . 24 3.4. 3 Paper III . 25 3.4. 4 Paper IV . 25 3.4. 5 Paper V . 25 3.5 Statistical analysis. 25 3.5. 1 Psychometric properties of the HIV sti