About 34 million individuals are presently living with HIV worldwide . The corresponding figure for Sweden is approximately 6000 individuals . About 150 of these are children under the age of 19 who have an early acquired HIV infection (perinatally infected) . Paediatric HIV was once a fatal disease, where most children with HIV infection died at an early age. Today, mother to child transmission of HIV is preventable in most cases if treatment is available. However, some children still acquire HIV. Reasons for that could be if the mother’s HIV infection is unknown or if treatment is unavailable. For children who are HIV infected, combined antiretroviral treatment (cART) has changed HIV from a fatal to chronic condition [4, 5]. Among children with HIV infection an increasing number is reaching adulthood, with long life-expectancy.
Despite the progress in prevention and treatment of the disease, HIV-related stigma remains to impact the lives of individuals living with HIV [6–11]. The concept of stigma was defined by Erving Goffman  as an “attribute that is deeply discrediting” that reduces the individual “from a whole and usual person to a tainted, discounted one” (p. 3). A theoretical model suggested by Earnshaw and Chaudoir (2009) describes the differences in stigma mechanisms experienced by individuals with, respective without, HIV. For individuals with HIV infection, HIV stigma is expressed as experiences and anticipation of stigmatization from others as well as internalized stigma, while HIV stigma in HIV-uninfected individuals is expressed as prejudice, stereotypes, and discrimination .
Although stigma among adults with HIV infection has been investigated to some extent (e.g. [6–11]), there is limited research on HIV stigma in children and most of the existing literature does not distinguish between children who have HIV themselves and children who are affected by HIV (e.g. orphans whose parents have died from AIDS [14, 15]). Since it is a relatively new phenomenon that children with HIV survive into adulthood, the consequences of stigma specific for HIV-infected children have not been much studied. Consequently, there is also limited research on which stigma mechanisms (e.g. internalized or anticipated stigma) might be influencing children with HIV infection. Having an inborn stigmatizing condition might result in different stigma experiences, than having acquired the stigmatizing condition as adult (cf.  pp. 32–40). However, a recent qualitative study from our research group indicates that young adults with perinatally acquired HIV experience stigma mechanisms similar to those infected with HIV as adults . The consequences of HIV stigma are different for HIV-infected and HIV-affected children in a number of areas. Individuals who have HIV infection are restricted by HIV-specific laws in many countries, including Sweden . Further, the associations between HIV stigma and quality of life outcomes are different for HIV-infected and HIV-affected children. For example, HIV-infected children might experience side-effects, symptoms, and life restrictions associated with their HIV infection. Interventions are needed for different reasons for HIV-infected and HIV-affected children. Interventions against HIV stigma for HIV-infected children might need to target treatment adherence and life issues including intimate relationships. In sum, as pointed out by Earnshaw and Chaudoir, the consequences of HIV stigma are different for infected and uninfected individuals .
Instruments to measure HIV-related stigma in adults have been developed and validated in different contexts (e.g. [18–20]). One of the scales, the widely used 40-item HIV Stigma Scale (HSS-40) by Berger et al. (2001) , has the advantage that it is differentiates between all three stigma mechanisms (enacted, anticipated, internalized) for HIV-infected individuals, as suggested by Earnshaw and Chaudoir . Two short versions of the HSS-40 have been adapted to and used in studies with young adults with HIV [21, 22]. However, to our knowledge, there are no instruments for HIV-infected children under the age of fifteen. As has been emphasized in several HIV stigma reviews and reports (e.g. [23–25]), sound instruments to measure HIV stigma are essential for the understanding of different expressions of HIV stigma, its consequences, and intervention outcomes. Therefore, the aim of the present study was to test an adapted short version of the HSS-40 for 8–18 years old children with HIV infection, living in Sweden.