Introduction

The role out of efficient HIV treatment has had a tremendous impact on HIV-related mortality and morbidity. From being a lethal disease, HIV infection is now considered a long-term manageable condition with normal life expectancy where treatment is available. 

Based on Goffman's (1974) definition, stigma is a social process involving labelling and stereotyping leading to loss of status and discrimination for the person experiencing the stigmatising feature.  Stigma has been a prominent feature of HIV already since the beginning of the pandemic and has been an obstacle to prevention, diagnosis and treatment ever since. In our work, we focus on stigma from the individual perspectives of people living with HIV and build on the HIV stigma framework developed by Earnshaw and Chaudoir (2009). According to the HIV stigma framework, HIV stigma consists of three different mechanisms enacted stigma (the stigmatising and discriminating actions one experiences from the environment), anticipated stigma (the actions one expects from the environment if one's HIV infection becomes known) and internalised or self-stigma (negative feelings against oneself because of having HIV).

Working in Sweden, we identified a need to systematically map and monitor HIV stigma among people living with HIV in Sweden. To fulfil this need, we drew upon an inventory of existing HIV stigma measures made by Earnshaw and Chaudoir (2009). From this inventory we selected the 40-item HIV Stigma Scale (Berger et al., 2001) to translate, adapt and test in the Swedish context (Lindberg et al., 2014). The HIV Stigma Scale covers four domains of HIV stigma: personalised stigma (enacted), disclosure concerns (anticipated), concerns with public attitudes (anticipated) and negative self-image (self-stigma). Each of the 40-items is answered on a four-point scale ranging from strongly disagree (1) to strongly agree (4). The individual responses to all items in a domain are summarised to form a domain score. Higher scores mean higher levels of experienced stigma. We translated and tested the scale and showed that it was valid and reliable to use in a Swedish context. However, this measure is quite lengthy and to be able to include the aspects of HIV stigma in broader surveys of the life-situation of people living with HIV and to decrease the item burden when wanting to monitor HIV stigma with repeated measurements over time, we decided to develop a short version of the scale which I will describe in brief as follows.

The paper

Reusing the data from our testing of the 40-item scale (Lindberg et al., 2014), we applied a three-stage process to reduce the number of items. 1) Removing items with underfit, 2) Removing cross-loading items and 3) Keeping as many aspects as possible, see Figure 1. This process resulted in a suggested 12-item scale with three items from each of the four aspects from the original scale. 

Figure 1. Visualisation of the item reduction process going from 40 to 12 items. Reproduced from the original publication featured here. 

We then took the suggested 12-item scale forward by testing it as one part of a nationwide survey of the life situation of people living with HIV in Sweden (Zeluf-Andersson et al., 2019). The study included a diverse sample of 1096 participants of which 880 had complete data available from the 12-item scale. To test the construct validity, we divided the sample into two groups and analysed the data from the first group with exploratory factor analysis (EFA) and the data from the second group with confirmatory factor analysis (CFA). The scale's internal consistency was tested by calculating Cronbach’s α for each of the four domain subscales. 

The results showed that we succeeded to cover most of the aspects included in the original scale and that the scale showed acceptable properties. However, three of the four domain scales showed floor or ceiling effects. This means that many participants (between 22 and 28%) gave the highest or lowest possible rating of the respective domain scale in focus, which makes those scales less sensitive to detect changes over time or differences between groups. 

Conclusion

We concluded that the 12-item Short HIV Stigma Scale that was developed, has comparable properties to the full-length scale and may be used when a shorter instrument is needed.

Continued work, experiences of HIV stigma in Sweden

Sweden was one of the first countries reaching the WHO UNAIDS 90-90-90 goal, later upgraded to the 95-95-95 goal. This means that at least 95% of people living with HIV have received their diagnosis and that at least 95% of those receiving treatment and of those in turn, at least 95% have successful outcomes of their treatment in the form of viral suppression ("undetectable viral load" which means extremely low or undetectable HIV levels in the blood; U=U - Undetectable=Untransmissible). One then also would expect that this would decrease the stigma attached to HIV. However, when we look at data that we have collected with the 40-item HIV Stigma Scale (2013; Lindberg et al., 2014) or the 12-item Short HIV Stigma Scale (2015 (Nilsson Schönnesson et al., 2024) and 2020 (Reinius et al., 2023)), as illustrated in Figure 2, we do not see any tendencies for decreasing stigma in people living with HIV in Sweden. The exeption is the conserns with public attiudes, where a slight decreasing tendency can be seen over time. A majority of the participants still have concerns revealing that they have HIV and many exhibits negative attitudes towards themselves related to having HIV.

Figure 2. HIV stigma levels in three different cohorts people living with HIV in Sweden collected 2013, 2015 and 2020 (comparison unpublished). Each stigma domain subscale could have a score ranging from 3-12, higher scores mean higher levels of experienced stigma.

Impact

The article where we describe the development of this 12-item Short HIV Stigma Scale receives a lot of attention; I get many questions from students and researcher colleagues around the world interested in using the scale for their work and it is one of the highly cited articles from the Health and Quality of Life Outcomes journal. Although it is unacceptable that people living with HIV still experience a great deal of stigmatisation, I am happy and proud that our work is valued and contributes to shed light on the life situation of people living with HIV in different contexts around the globe.

References

Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24(6):518–29. https://doi.org/10.1002/nur.10011. 

Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009;13(6):1160–77. https://doi.org/10.1007/s10461-009-9593-3. 

Goffman E. Stigma: notes on the management of spoiled identity. 1974. New York, NY: J. Aronson. 

Lindberg MH, Wettergren L, Wiklander M, Svedhem-Johansson V, Eriksson LE. Psychometric evaluation of the HIV stigma scale in a Swedish context. PLoS One. 2014;9(12):e114867. https://doi.org/10.1371/journal.pone.0114867. 

Nilsson Schönnesson L, Dahlberg M, Reinius M, Zeluf-Andersson G, Ekström AM, Eriksson LE. Prevalence of HIV-related stigma manifistations and their contributing factors among people living with HIV in Sweden - a nationwide study. BMC Public Health 2024;(1):1360. https://doi.org/10.1186/s12889-024-18852-9. 

Reinius M, Svedhem V, Bruchfeld J, Holmström Larm H, Nygren-Bonnier M, Eriksson LE. COVID-19-related stigma among infected people in Sweden; psychometric properties and levels of stigma in two cohorts as measured by a COVID-19 stigma scale. PLoS ONE 2023;18(6):e0287341. https://doi.org/10.1371/journal.pone.0287341. 

Zeluf-Andersson G, Eriksson LE, Nilsson Schönnesson L, Höijer J, Månehall P, Ekström AM. Beyond viral suppression: the quality of life of people living with HIV in Sweden. AIDS Care 2019;31(4):402–412. https://doi.org/10.1080/09540121.2018.1545990.