Burden of Care and Experiences with Caregiving to Children Living with Autism Spectrum Disorder in Nigeria

Abstract

Background Managing children diagnosed with autism spectrum disorder poses a daunting task for their caregivers. The burden of care takes a toll on the physical, psychological, social, and financial wellbeing of caregivers. This study explored the burden of care among caregivers of children living with autism in Nigeria and informs targeted psychosocial support interventions Methods This phenomenology mixed-method study was conducted among 103 sampled caregivers in Cross River, Nigeria. The PREPARE and Zarit Burden Interview tools were used for the data collection. Data were analyzed using the inductive and deductive approaches qualitatively, and SPSS version 25 was used for quantitative analysis. Results Almost two-thirds (65%) of the caregivers reported a high caregiver burden. Societal stigma, lack of support systems, and acceptance, and the demanding task of caregiving to autistic children were the major challenges faced by the caregivers. These resulted in significant emotional distress, which is a build-up to a high burden of care. Conclusion Given the high burden of care for caregivers, targeted actions must be taken to properly enlighten Nigerian societies on autism spectrum disorder, and the need for acceptance. Key stakeholders must provide autistic healthcare facilities and resources. Also, social support groups would help establish a sense of belonging and support.