Abstract

BackgroundHIV is a stigmatizing medical condition. The concept of HIV stigma is multifaceted, with personalized stigma (perceived stigmatizing consequences of others knowing of their HIV status), disclosure concerns, negative self-image, and concerns with public attitudes described as core aspects of stigma for individuals with HIV infection. There is limited research on HIV stigma in children. The aim of this study was to test a short version of the 40-item HIV Stigma Scale (HSS-40), adapted for 8–18 years old children with HIV infection living in Sweden.MethodsA Swedish version of the HSS-40 was adapted for children by an expert panel and evaluated by think aloud interviews. A preliminary short version with twelve items covering the four dimensions of stigma in the HSS-40 was tested. The psychometric evaluation included inspection of missing values, principal component analysis (PCA), internal consistency, and correlations with measures of health-related quality of life (HRQoL).ResultsFifty-eight children, representing 71% of all children with HIV infection in Sweden meeting the inclusion criteria, completed the 12-item questionnaire. Four items concerning participants’ experiences of others’ reactions to their HIV had unacceptable rates of missing values and were therefore excluded. The remaining items constituted an 8-item scale, the HIV Stigma Scale for Children (HSSC-8), measuring HIV-related disclosure concerns, negative self-image, and concerns with public attitudes. Evidence for internal validity was supported by a PCA, suggesting a three factor solution with all items loading on the same subscales as in the original HSS-40. The scale demonstrated acceptable internal consistency, with exception for the disclosure concerns subscale. Evidence for external validity was supported in correlational analyses with measures of HRQoL, where higher levels of stigma correlated with poorer HRQoL.ConclusionThe results suggest feasibility, reliability, as well as internal and external validity of the HSSC-8, an HIV stigma scale for children with HIV infection, measuring disclosure concerns, negative self-image, and concerns with public attitudes. The present study shows that different aspects of HIV stigma can be assessed among children with HIV in the age group 8–18.

Highlights

  • The HIV Stigma Scale (HSS-40) measures four dimensions of HIV stigma: 1) personalized stigma, perceived stigmatizing consequences of others knowing of one’s HIV status; 2) disclosure concerns, fear of disclosing one’s own HIV status and fear that those who know would tell others; 3) negative self-image, experiencing oneself as tainted and not as good as others because of one’s HIV; and 4) concerns with public attitudes, conceptions of what people might think about a person with HIV

  • The study resulted in an 8-item stigma scale, the HIV Stigma Scale for Children (HSSC-8), measuring disclosure concerns, negative self-image, and concerns with public attitudes among children with HIV infection

  • The HSSC-8 was inversely related to subscales from the DISABKIDS Chronic Generic Module (DCGM-37), supporting external validity and demonstrating that HIV stigma is associated with poorer health-related quality of life (HRQoL) in children

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Summary

Introduction

There is limited research on HIV stigma in children. The aim of this study was to test a short version of the 40-item HIV Stigma Scale (HSS-40), adapted for 8–18 years old children with HIV infection living in Sweden. About 34 million individuals are presently living with HIV worldwide [1]. About 150 of these are children under the age of 19 who have an early acquired HIV infection (perinatally infected) [3]. Paediatric HIV was once a fatal disease, where most children with HIV infection died at an early age. 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

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