Economic burden and mental health of primary caregivers of perinatally HIV infected adolescents from Kilifi, Kenya

Patrick V Katana,Derrick Ssewanyana,Julie Jemutai,Charles R Newton,Paul Mwangi,Amina Abubakar,Moses K Nyongesa

doi:10.1186/s12889-020-8435-0

Abstract

BackgroundEighty per cent of perinatally HIV infected (PHI) adolescents live in sub-Saharan Africa (sSA), a setting also characterized by huge economic disparities. Caregiving is crucial to the management of chronic illness such as HIV/AIDS, but the economic costs and mental disorders borne by caregivers of PHI adolescents often go unnoticed. In this study, we evaluated economic costs, coping strategies and association between economic cost and mental health functioning of caregivers of perinatally HIV infected adolescents in Kilifi, Kenya.MethodsWe used a cost of illness descriptive analysis approach to determine the economic burden and Patient Health Questionnaire (PHQ-9) to assess the caregivers’ mental health. Cross-sectional data were collected from 121 primary caregivers of PHI adolescents in Kilifi using a structured cost questionnaire. Economic costs (direct and indirect costs) were measured from primary caregivers’ perspective. We used descriptive statistics in reporting the results of this study.ResultsAverage monthly direct and indirect costs per primary caregiver was Ksh 2784.51 (USD 27.85). Key drivers of direct costs were transportation (66.5%) and medications (13.8%). Total monthly costs represented 28.8% of the reported caregiver monthly earnings. Majority of the caregivers borrowed resources to cope with high economic burden. About 10.7% of primary caregivers reported depressive symptoms. Caregivers with positive depression screen (PHQ-9 score ≥ 10) had high average monthly direct and indirect costs. However, this was not statistically different compared to costs incurred by caregivers who screened negative for depressive symptoms.ConclusionOur study indicates that HIV/AIDS is associated with a significant economic burden for caregivers of adolescents living with HIV. Results underscore the need for developing economic empowerment and social support programmes that reduce the economic burden of caring for perinatally infected adolescent. These efforts may improve the mental health and quality of life of caregivers of adolescents living with HIV.

Highlights

Eighty per cent of perinatally Human immune virus (HIV) infected (PHI) adolescents live in sub-Saharan Africa, a setting characterized by huge economic disparities
A total of 124 caregivers of perinatally HIV infected (PHI) adolescents were approached to participate in this sub-study
None of the caregivers registered with National Hospital Insurance Fund (NHIF) reported to use this cover to seek healthcare for their adolescents living with HIV

Summary

Introduction

Eighty per cent of perinatally HIV infected (PHI) adolescents live in sub-Saharan Africa (sSA), a setting characterized by huge economic disparities. The increased longevity due to improvement in treatment and care for people living with HIV comes with the long-term responsibility by primary caregivers and/or family members of caring for the HIV infected young person throughout their developmental span This may require that the caregiver adapts to the costs and stresses of caregiving demands. Such costs often comprise both direct (costs due to resource use attributable to an illness such as consultation, drugs, tests and travel cost to hospital [10]) and indirect costs (costs incurred from reduction or halting work productivity due to work productivity [11]) In settings such as sSA where healthcare services are often out-of-pocket [12, 13], most of caregiving burden falls solely on primary caregivers of PHI adolescents. The costs seem to be hidden or overlooked as they are not well captured on official records; the development of evidence-based policy is hindered

Results

Discussion

Conclusion