Abstract

BackgroundChronic disease greatly increases children’s dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease. Thus, chronic kidney disease (CKD) presents a burden for children and their families that last throughout life in different aspects. This study aimed to assess family impact and economic burden of chronic kidney disease (CKD) in children on their families.MethodsA cross-sectional study was carried out on 250 caregivers of children with CKD attending tertiary care hospital/health insurance clinics in Assiut, Egypt using PedsQL™ family impact module (FIM) for assessing family impact and economic burden between January and May 2018.ResultsSeventy six percent of caregivers shared paying for treatment with health insurance while 14% paid the total expenses out of their pockets. Although the majority (87.2%) of caregivers suffered different degrees of financial hardship, more than 60% of them had no coping strategy. The regression module showed that responding caregiver, degree of financial hardship, treatment modality, and socioeconomic class were significant predictors of total FIM (β = 0.38, P < 0.001; β = 0.28, P < 0.001; β = 0.22, P < 0.001; β = 0.13, P = 0.006 respectively).ConclusionMost caregivers were involved in paying for treatment of their children either totally or sharing with health insurance and suffered different degrees of financial hardship. Mothers, caregivers with great financial hardship, and caregivers of children on dialysis had the lowest scores of PedsQL™ FIM. There is a high need for expansion of health insurance umbrella to reduce financial hardship together with continued multidimensional support to families.

Highlights

  • Childhood chronic diseases usually affect family functioning

  • This assessment is important for health care professionals and policy makers to improve the healthrelated quality of life (HRQoL) of children and their caregivers [3]

  • One of the most chronic diseases which can affect the quality of life (QoL) of children and their families is Darwish et al Journal of the Egyptian Public Health Association (2020) 95:27 chronic kidney disease (CKD) [4]

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Summary

Introduction

Childhood chronic diseases usually affect family functioning. Chronic disease greatly increases children’s dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease [1]. The assessment of family impact of chronic childhood illness is extremely useful to identify the need for family education, psychological intervention, and social support This assessment is important for health care professionals and policy makers to improve the HRQoL of children and their caregivers [3]. One of the most chronic diseases which can affect the quality of life (QoL) of children and their families is Darwish et al Journal of the Egyptian Public Health Association (2020) 95:27 chronic kidney disease (CKD) [4]. Caring for those children places significant economic stress on caregivers: health care costs, disruption to work, travel expenses, and out-of- pocket payments. This study aimed to assess family impact and economic burden of chronic kidney disease (CKD) in children on their families

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