Caregiving experiences, challenges, and coping strategies among caregivers of children with epilepsy and/or cerebral palsy in southwestern Uganda

Abstract

Background: Caregivers of children with epilepsy, cerebral palsy (CP), or co-occurring epilepsy and CP in low-resource settings face substantial psychological, social, and economic challenges. Despite high caregiver burden in sub-Saharan Africa, limited qualitative research has explored how caregivers perceive their experiences, their children’s care needs, and the contextual factors shaping coping. This study examined caregivers’ lived experiences and coping strategies to inform interventions that strengthen caregiver well-being and capacity. Methods: A descriptive qualitative study was conducted at the paediatric neurology clinic of Mbarara Regional Referral Hospital in southwestern Uganda. Twenty in-depth interviews were held with primary caregivers of children with epilepsy, CP, or both. Purposive sampling ensured variation in caregiving duration, child diagnosis, and coping patterns. Interviews were conducted in English or Runyankore, audio-recorded, transcribed, translated, and analyzed thematically using Braun and Clarke’s six-step approach. Data collection and analysis occurred iteratively until saturation. Results: Caregivers described caregiving as intensive and continuous, with children requiring substantial assistance in daily activities, consistent medication adherence, physiotherapy, and coordinated school support. Access to hospitals, schools, and community resources was inconsistent, often leaving caregivers to bridge gaps in care. Financial strain, stigma, social isolation, and disruption of income-generating activities were pervasive challenges that compounded emotional distress. Despite these pressures, caregivers demonstrated adaptive coping strategies, drawing on hope, acceptance, faith, and social connectedness to sustain their roles. They reported emotional exhaustion and limited family or professional support, with minimal engagement in formal mental health services. At the same time, caregivers developed structured routines, environmental adjustments, and personalized problem-solving strategies to maintain stability and ensure continuity of care. Conclusion: This study demonstrates that caregiving for children with chronic neurological conditions, including epilepsy and CP, in low-resource settings is highly demanding, marked by substantial medical, emotional, social, and financial challenges. Despite these burdens, caregivers show notable resilience through faith, optimism, and adaptive coping strategies. The findings underscore the urgent need for comprehensive support, including reliable medication access, psychosocial services, assistive devices, and stigma-reduction efforts, to strengthen caregiver well-being and improve care for affected children.