Legal guardians understand how children with the human immunodeficiency virus perceive quality of life and stigma

Abstract

AimThis 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.MethodsA 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.ResultsIntraclass 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.ConclusionThe 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.

“The Medication always Reminds Me”. Living with Perinatal acquired HIV-Children and Parentsʼ View Points

“…As children sometimes say that they deliberately forget their medication, this might be a reason why they are more worried and express themselves more negatively than their parents. The nonadherence might also be an indicator of disclosure concerns, as treatment is the only visible indication that the child has HIV [10]. Furthermore, children sometimes deliberately forget to take the medical treatment as it is often the only reminder of their PAH [22,31,32] and they want to avoid being different from their peers [31,32].…”

“…Childhood is a time of thoughts of existential questions about life and adulthood. For a child with a chronic disease, as HIV, adolescence can become difficult and be a cause to nonadherence to treatment [4,10].…”

“…Therefore, treatment becomes essential. The phenomenon of non-adherence is known from other groups of children and is often related to not wanting to be different from their peers [10,11].…”

“…Research has shown that parents must be aware of children's barriers to medical treatment adherence and be conscious of which barriers are the strongest [11]. Furthermore, parents' own anxiety related to disclosure [10,16] and stress related to the child's treatment influences adherence to treatment [14,16]. It emerged in an Indian study that children and parents experience several daily challenges, and many of these challenges are unmarked but relevant expectations [17].…”

“…The aim of this study was twofold: (1) to describe how children (aged [8][9][10][11][12][13][14][15][16][17][18] with PAH and parents of children (aged 0-18) view the child's overall life, future and adherence to medical treatment, and (2) to discover if children with PAH and their parents have differing views.…”