Experiences and unmet needs among caregivers of children living with Autism Spectrum Disorder in Nigeria: A qualitative study using the socio-ecological model

Abstract

Introduction: This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a 14.8% prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interactions and stigma. Despite this, the unmet needs and psychosocial burdens of autism spectrum disorder on caregivers have been understudied in Nigeria. The study contributes evidence and raises interest in this area of research. Methods: This qualitative study was conducted among twenty-three purposively selected caregivers. Questions from the PREPARE and Zarit Burden Interview tools were adapted for the interview and discussion guides. Data were collected among caregivers of pupils in selected special needs schools in Cross River State, Nigeria. Inductive and deductive approaches were used for the analysis using NVivo 20 pro. The socio-ecological model was used to generate the themes and quotes. Results: The study generated four themes and eleven sub-themes across four levels of the socio-ecological model. Findings from our study showed that caregivers of children undergo significant emotional distress, disbelief, and fear at the early stage of diagnosis. Furthermore, families and friends had difficulty comprehending or accepting their children’s diagnosis, which further created tension and misunderstanding. Socio-cultural contexts such as stigma and isolation were not uncommon in the society. Conclusion: Given the burden of the psychological demand and stigma attached to caregivers and children with autism, there is an urgent need for a tailor-made intervention with the key interplay of individual, interpersonal, societal/institutional, and policy in Nigeria. Advocacy efforts and awareness chaired by caregivers should be strengthened across all levels of the society in Nigeria.