Parents' experiences raising children with autism spectrum disorder in Kitwe and Ndola, Zambia: An ecological perspective
TL;DR
The lived experiences of parents raising children with ASD in Kitwe and Ndola districts, Zambia are explored, revealing how family, institutional, and cultural systems jointly shape parental experience.
Abstract
Parents raising children with Autism Spectrum Disorder (ASD) face substantial emotional, social, and economic challenges, particularly in low-resource settings where awareness and support services remain limited. This study explored the lived experiences of parents raising children with ASD in Kitwe and Ndola districts, Zambia. A hermeneutic phenomenological design, situated within an interpretivist paradigm, guided data collection through in-depth semi-structured interviews with twelve parents of children diagnosed with ASD. Data were analyzed using Reflexive Thematic Analysis, which generated six interrelated themes: emotional shock and psychological distress, physical exhaustion, social isolation and stigmatization, family strain, financial burden, and lifestyle disruption accompanied by adaptive resilience. Parents described initial denial, persistent anxiety, and physical depletion from constant supervision, alongside withdrawal from community and religious life due to stigma. Financial strain arose from therapy costs and reduced household income, while family relationships were affected by sibling neglect and tension. Despite these hardships, parents demonstrated resilience, prioritizing life-skills training to foster their children's independence. Findings were interpreted through Bronfenbrenner's Ecological Systems Theory, revealing how family, institutional, and cultural systems jointly shape parental experience. The study recommends expanded community awareness, parent support groups, improved diagnostic and therapeutic access, family counselling, and strengthened government and community-based support systems.