This study explores the lived experiences and unmet needs of caregivers of children diagnosed with autism spectrum disorder (ASD) in Nigeria. ASD is increasingly prevalent in the country and places a substantial economic and psychosocial burden on affected families and society at large. Caregivers often face restricted social engagement, social exclusion, and stigma associated with the condition. Despite these challenges, limited research has focused on the psychosocial impact of ASD on caregivers in Nigeria. This study addresses this gap by generating empirical evidence and drawing attention to the caregiving realities and unmet support needs within this context. A qualitative research design was employed, involving twenty-three caregivers purposively selected for participation. Interview and discussion guides were developed by adapting questions from the PREPARE and Zarit Burden Interview instruments. Data were collected from caregivers of children attending selected special needs schools in Cross River State, Nigeria. Both inductive and deductive analytical approaches were applied, with data management and analysis conducted using NVivo 20 Pro software. The socio-ecological model guided the organization of themes and interpretation of participants’ narratives.
Analysis of the data revealed four overarching themes and eleven sub-themes corresponding to the four levels of the socio-ecological model. Findings indicated that caregivers commonly experienced intense emotional distress, shock, fear, and disbelief following their child’s diagnosis. In addition, many families and social networks struggled to understand or accept the diagnosis, often leading to strained relationships, conflict, and miscommunication. Broader socio-cultural factors, including stigma, discrimination, and social isolation, were also prevalent and significantly shaped caregivers’ experiences. Given the substantial psychological burden and pervasive stigma faced by caregivers and children living with ASD, there is an urgent need for context-specific interventions in Nigeria. Such interventions should adopt a multi-level approach that integrates individual, interpersonal, institutional, and policy-level strategies. Strengthening caregiver-led advocacy and increasing public awareness across all levels of society are essential to reducing stigma and improving support systems for families affected by ASD in Nigeria.
