Health-related quality of life and HIV-related stigma in children living with HIV in Sweden

Abstract

In settings where combination antiretroviral therapy is generally available, HIV has changed from being a fatal disease to a chronic condition. In contrast to the era before combination antiretroviral therapy, children with prenatally or early acquired HIV are expected to survive childhood and live an adult life. Since this is a new and growing group of young people in society who are in contact with health care, it is essential to be able to provide the support these children and their families need. To be able to do this, it is essential to investigate perceptions of health-related quality of life and HIV-related stigma among these children. Previous research is limited and has mainly focused on children living in households where one or more members are living with a known HIV infection but where the child’s HIV status is unknown. The overall aim of this thesis is therefore to gain an increased understanding of health-related quality of life and HIV-related stigma in the context of children and young adults living with HIV infection in Sweden. The thesis comprises four papers, one based on a qualitative study (I) and three based on a quantitative study (II-IV).

In paper I the aim was to explore the young adults’ experiences of growing up with HIV in urban Sweden. Data were collected using semi-structured interviews with ten young adults (5 female and 5 male; aged 15-21) with early acquired HIV. Qualitative content analysis of the transcribed interviews revealed five main categories describing the experiences of growing up and living with HIV in Sweden. The categories are about protecting oneself from being stigmatized, being in control, losses in life, the importance of health care and having faith in the future despite living with an HIV infection. The quantitative study is cross-sectional, nationwide and consists of three papers (II-IV). The participants in papers II and III comprise 58 children aged 8-18 years; 37 of those younger than 17 were, together with one of their legal guardians, included in paper IV.

In paper II the aim was to test and adapt a short version of an HIV stigma scale adapted for children. The results from the psychometric evaluation of the short version of the HIV stigma scale for children indicated that three dimensions: negative self-image, public attitudes and disclosure concerns, were acceptable to use among children with early acquired HIV, whilst the fourth dimension personalized stigma, was not acceptable to use due to high non-response. In paper III the aim was to describe health-related quality of life and HIV-related stigma among the participating children. Further, the relation between health-related quality of life and HIV-related stigma was examined by structural equation modeling. The results indicated that participants rated their health-related quality of life as high in relation to children with other chronic conditions and expressed low extent of HIV-related stigma related to negative self-image and public attitudes. However, the results indicated a more pronounced HIV-related stigma related to disclosure concerns. Furthermore, the results revealed a negative association between health-related quality of life and HIV-related stigma. The aim of paper IV was to describe how legal guardians assess their children’s health-related quality of life and HIV-related stigma in relation to their children’s own ratings by using both child and proxy versions of the DISABKIDS Chronic Generic Module and HIV stigma scale. In the analysis it was found that there was a high consistency between legal guardians’ ratings and the children’s own ratings of health-related quality of life and HIV-related stigma.

The main findings of this thesis, based on data from a nationwide sample from the total population of children living with perinatally or early acquired HIV infection, indicate that children living with HIV in Sweden do well in terms of self-reported health-related quality of life and HIV-related stigma. However, since it is known that, among adults, HIV-related stigma may affect health-related quality of life negatively, this may also be a risk among children; the data of the present thesis supports the negative relation between health-related quality of life and HIV-related stigma previously shown in adults. In order to obtain a more comprehensive picture of the living situation of these children and families, more studies are needed in which children are asked about their experiences regarding HIV-related stigma. Supplementary research is also required to further understand the relationship between HIV-related stigma and health-related quality of life in children living with HIV, and how this affects them and their families in daily life.