title: Legal guardians understand how children with the human immunodeficiency virus perceive quality of life and stigma.
abstract: OBJECTIVE
  This aim of this study was to describe how legal guardians assessed health-related quality of life and HIV-related stigma in children with the human immunodeficiency virus (HIV) compared to the children's own ratings.
  
  
  METHODS
  A cross-sectional nationwide study was performed to compare how 37 children aged from eight to 16 years of age with perinatal HIV, and their legal guardians, assessed the children's health-related quality of life and HIV-related stigma. Data were collected using the 37-item DISABKIDS Chronic Generic Module and a short eight-item version of the HIV stigma scale.
  
  
  RESULTS
  Intraclass correlations indicated concordance between the legal guardians' ratings and the children's own ratings of the child's health-related quality of life and HIV-related stigma. There were no statistically significant differences between the ratings of the two groups and gender did not have any impact on the results. Both groups indicated that the children had concerns about being open about their HIV status.
  
  
  CONCLUSIONS
  The results of this study indicated that legal guardians understood how their children perceived their health-related quality of life and HIV-related stigma. The results also indicated the need for interventions to support both the children and legal guardians when it came to disclosing the child's HIV status.
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.|Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
authors.forename: Lise-Lott
authors.initials: LL
authors.lastname: Rydström
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.|Department of Clinical Sciences Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Maria
authors.initials: M
authors.lastname: Wiklander
authors.affiliation: Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.|Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Britt-Marie
authors.initials: BM
authors.lastname: Ygge
authors.affiliation: Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.|Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Lars
authors.initials: L
authors.lastname: Navér
authors.affiliation: Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.|Department Learning, Informatics, Management and Ethics, Karolinska Institutet, Solna, Sweden.|Department of Infectious Diseases, Karolinska University Hospital, Huddinge, Sweden.|School of Health Sciences, City University London, London, UK.
authors.forename: Lars E
authors.initials: LE
authors.lastname: Eriksson
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003430:Cross-Sectional Studies; D005260:Female; D015658:HIV Infections / Q000523:psychology*; D006304:Health Status; D006801:Humans; D007872:Legal Guardians / Q000523:psychology*; D008297:Male; D011788:Quality of Life; D012649:Self Concept; D057545:Social Stigma; D011795:Surveys and Questionnaires; D013548:Sweden
keywords: HIV-related stigma; Health-related quality of life; Human immunodeficiency virus; Legal guardians; Proxy