Agreement and Discrepancy on Emotional and Behavioral Problems Between Caregivers and HIV-Infected Children and Adolescents From Uganda

Abstract

Background: HIV-infected children and adolescents (CA-HIV) face significant mental health challenges related to a broad range of biological and psychosocial factors. Data are scarce on the agreement and discrepancy between caregivers and CA-HIV regarding emotional and behavioral problems (EBPs) in CA-HIV. Objectives: We determined agreement between self- versus caregiver- reported EBPs and describe factors associated with informant discrepancy among caregiver–youth dyads who participated in the “Mental health among HIV-infected CHildren and Adolescents in KAmpala and Masaka, Uganda” (CHAKA) study. Methods: In a cross-sectional sample, caregiver-reported EBPs were assessed with the Child and Adolescent Symptom Inventory-5 (CASI-5), and self-reported problems were evaluated with the Youth Inventory-4 (YI-4) in 469 adolescents aged 12–17 years and the Child Inventory-4 (CI-4) in 493 children aged 8–11 years. Adolescents were questioned about experiences of HIV stigma. Caregiver psychological distress was assessed with the Self-Reporting Questionnaire (SRQ-20). Linear regression models were applied to identify variables associated with discrepancy scores. Results: Self-reported emotional problems (EPs) were present in 28.8% of adolescents and 36.9% of children, and 14.5% of adolescents self-reported behavioral problems (BPs). There was only a modest correlation ( r ≤ 0.29) between caregiver- and CA-HIV-reported EBPs, with caregivers reporting more EPs whereas adolescents reported more BPs. Informant discrepancy between adolescents and caregivers for BPs was associated with adolescent age and caregiver’s employment and HIV status. Among adolescents, EP discrepancy scores were associated with adolescent’s WHO HIV clinical stage, caregiver level of education, and caregivers caring for other children. Among children, EP discrepancy scores were associated with child and caregiver age, caregiver level of education, and caregiver self-rated health status. HIV stigma and caregiver psychological distress were also associated with discrepancy, such that adolescents who experienced HIV stigma rated their EPs as more severe than their caregivers did and caregivers with increased psychological distress rated EBPs as more severe than CA-HIV self-rated. Conclusions: EBPs are frequently endorsed by CA-HIV, and agreement between informants is modest. Informant discrepancy is related to unique psychosocial and HIV-related factors. Multi-informant reports enhance the evaluation of CA-HIV and informant discrepancies can provide additional insights into the mental health of CA-HIV.

Prevalence, Risk Factors, and Negative Outcomes of Anxiety and Depressive Disorders among HIV-Infected Children and Adolescents in Uganda: CHAKA Study 2014-2017

“…This study established that the age of the child was significantly associated with anxiety disorders among CA-HIV. Findings from this study happen to be in agreement with other previous studies [ 30 , 33 ], which suggest that CA-HIV are at an increased risk of having anxiety-related problems as compared to non-HIV-positive children and adolescents but with advancing age of CA-HIV, the “anxiety-related problems” are lessened through regular contact with health services and mental health support [ 34 ]. According to this study, caregiver psychological distress was significantly associated with anxiety disorders among CA-HIV; a previous publication by the same research group established that increased caregiver psychological distress is associated with increased emotional (anxiety) related problems among CA-HIV due to the multiple challenges experienced by both the caregivers and CA-HIV [ 33 ].…”

“…Findings from this study happen to be in agreement with other previous studies [ 30 , 33 ], which suggest that CA-HIV are at an increased risk of having anxiety-related problems as compared to non-HIV-positive children and adolescents but with advancing age of CA-HIV, the “anxiety-related problems” are lessened through regular contact with health services and mental health support [ 34 ]. According to this study, caregiver psychological distress was significantly associated with anxiety disorders among CA-HIV; a previous publication by the same research group established that increased caregiver psychological distress is associated with increased emotional (anxiety) related problems among CA-HIV due to the multiple challenges experienced by both the caregivers and CA-HIV [ 33 ]. According to this study, current CD4 count of CA-HIV was associated with anxiety disorders, consistent with other previous studies which suggest that low CD4 count is associated with major depression and anxiety among CA-HIV [ 1 , 31 , 35 ]; anxiety among CA-HIV relates to the “fear and anxiety” associated with the likely clinical manifestation of HIV/AIDS [ 30 ].…”

“…According to this study, current CD4 count of CA-HIV was associated with anxiety disorders, consistent with other previous studies which suggest that low CD4 count is associated with major depression and anxiety among CA-HIV [ 1 , 31 , 35 ]; anxiety among CA-HIV relates to the “fear and anxiety” associated with the likely clinical manifestation of HIV/AIDS [ 30 ]. This study revealed an association between caregiver religion and anxiety disorders among CA-HIV; findings from this study relates to a previous study which suggested that in Africa, religion and life are so deeply fused to the extent that material utility of religion in search for solutions to life's crises happens to be an everyday experience to most caregivers to CA-HIV [ 36 ]; thus, they often use it as a coping strategy [ 33 ]. In this study, anxiety disorders were associated with any attention-deficit/hyperactivity disorder (ADHD), oppositional defiant disorder(ODD), any depression, and extremely upsetting events.…”

“…An extensive review of studies among PHIV+ youth aged 10 years and older established that age was associated with the presence of “anxiety and depressive disorders” [ 31 ]. This study further revealed that the odds of a depressive disorder were lower for a CA-HIV with a caregiver aged over fifty years; a related study established that increasing caregiver age is associated with decreased ratings of emotional problems among CA-HIV [ 33 ], which happens to be a result of the experience and emotional maturity of caregivers with advanced age [ 36 ], thus, the lower odds of depressive disorders among CA-HIV with a caregiver aged over fifty years of age. Similarly, findings from this study suggest that caregiver distress was significantly associated with depressive disorders among CA-HIV; possibly, caregivers' psychological distress (indicated by the SRQ-20 score) compromises normal parenting, negatively impacts on the emotional development of CA-HIV, and thus makes them to be at risk of developing disorders like depression [ 6 ].…”

The prevalence of mental health problems in sub-Saharan adolescents living with HIV: a systematic review

“…van den Heuvel et al . ( 2019 ) explored agreement and discrepancies between caregiver- and self-reported results from the sample of Kinyanda et al ., and only found a modest correlation between the two. A low inter-informant agreement was also reported by Doku and Minnis ( 2016 ) from a sample of HIV-affected children and their caregivers.…”