Psychometric properties of a short version of the HIV stigma scale, adapted for children with HIV infection

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.

A systematic review of measures of HIV/AIDS stigma in paediatric HIV‐infected and HIV‐affected populations

“…Of the 22 final articles, eight studies were conducted in the United States [9,16,19–24], five in Africa [10,15,25–27], eight in Asia [28–35] and one in Sweden [36]. Seven unique studies had large sample sizes ( N >900): four studies with the same orphaned, vulnerable children and comparison children were conducted in China [31–34], and three were conducted in Africa [10,15,25].…”

“…Seven unique studies had large sample sizes ( N >900): four studies with the same orphaned, vulnerable children and comparison children were conducted in China [31–34], and three were conducted in Africa [10,15,25]. Five of the studies focused on HIV-affected children [10,25,27,31,37], nine focused on HIV-infected children [16,19,21,23,24,26,28,29,36] and eight focused on comparing groups of HIV/AIDS orphans, orphans from other illnesses and vulnerable children [9,20,22,30,32–35]. …”

“…Nine of the studies focused on implementing or validating a stigma scale with HIV-infected paediatric or young adult participants [16,19,21,23,24,26,28,29,36]. Four of these studies focused on special populations: two recruited only participants who were young men who have sex with men (MSM) [19,24], one recruited only behaviourally infected female participants [26] and one recruited only substance-using young people [23].…”

“…Four of these studies focused on special populations: two recruited only participants who were young men who have sex with men (MSM) [19,24], one recruited only behaviourally infected female participants [26] and one recruited only substance-using young people [23]. The five remaining studies, all of which were smaller studies ( N <900), included general populations of HIV-infected youth [16,21,28,29,36]. …”

Stigma in women living with HIV in Coimbatore District of TamilNadu

“…There are different domains of stigma-personalized stigma, stigma felt due to fear of consequences of others knowing of one"s HIV status; [10,11]. Disclosure concerns, fear of disclosing one"s own HIV status and fear that those who know would tell others.…”