A phenomenological study of lived experiences of parents caring for children with Down syndrome in Iju, Lagos State, Nigeria

Abstract

Objective: Caring for persons with Down Syndrome (DS) presents complex emotional, social, and practical challenges for families, particularly in resource-constrained settings. However, context-specific evidence on the lived experiences of parents in Nigeria remains limited. This study explored the lived experiences of parents caring for children with Down Syndrome in Iju, Lagos State, Nigeria.

Methods: A qualitative phenomenological design was employed. Eight participants (n = 8), comprising seven parents and one sibling, were purposively recruited through the Down Syndrome Foundation Nigeria (DSFN), Iju, Lagos State. Data were collected using in-depth semi-structured interviews and analysed using thematic analysis guided by phenomenological principles.

Results: Five interconnected themes emerged: emotional and psychological trajectory, multidimensional caregiving burden, adaptive coping strategies, navigating stigma and social visibility, and support systems and structural gaps. Parents described an initial period of shock followed by gradual acceptance and resilience. Financial strain, employment disruptions, and emotional fatigue were prominent challenges. Participants relied heavily on family, religious networks, and the DSFN for support, while perceiving limited formal governmental assistance.

Conclusion: Parenting persons with Down Syndrome in this setting is an emotionally demanding yet adaptive journey shaped by persistent caregiving pressures and uneven structural support. Strengthening formal support systems, expanding financial and psychosocial assistance, and addressing disability-related stigma are essential to improving family well-being.