Experiences of burden and needs in caregivers with pediatric noninfectious uveitis: a qualitative study

Abstract

Background Long-term, potentially lifelong therapy is needed to treat noninfectious uveitis (NIU) in children. Previous research has focused primarily on treatment approaches, but few studies have investigated the effect of children’s chronic illness on other family members. The aim of this study is to explore the experiences of burden and needs in caregivers of children with NIU, and to provide a reference for formulating targeted intervention strategies. Methods A total of 11 caregivers of children with NIU were recruited from a tertiary-level eye hospital in Wenzhou Province, China. For data collection, semi-structured interviews were conducted. Data analysis was conducted using Colaizzi’s seven-step analysis method. Themes were encoded and created with NVivo 14.0 for Mac software. Results Based on the Social Ecosystem Theory, three major themes and ten subthemes emerged from the analysis: (1) Micro system — Caregiver distress and growth coexist (subthemes: Affected physical health, difficulties in the child’s health management, emotional well-being, psychological Adjustment and Growth); (2) Mezzo system — Changes in family lifestyle (subthemes: Family financial challenges, family management dilemmas, weakened family socialization); (3) Macro system — Weak support system (subthemes: Insufficient information support, limited medical support conditions, lack of social understanding and support). Conclusions The social-ecological systems of caregivers for children with NIU present numerous difficulties impacting their caregiving experiences. It is imperative for healthcare providers to address the psychosocial issues faced by caregivers and to develop family-centered intervention strategies and support systems, enabling them to cope effectively and overcome challenges. Supplementary Information The online version contains supplementary material available at 10.1186/s12912-024-02602-8.