From Lived Experiences to Contextual Solutions: A Proposed Framework to Support Parents Raising Children with Autism at the Pre-operational Stage in Lusaka, Zambia

Abstract

Children with autism at the pre-operational stage require substantial parental involvement to support their communication, social interaction, cognitive development and adaptive functioning. However, parents often encounter emotional, social, financial and institutional challenges that may limit their capacity to provide consistent support. Although several parent-support frameworks have been developed internationally, their relevance to the cultural, socioeconomic and service-delivery realities of Zambia remains uncertain. This study explored the lived experiences and support needs of parents raising children with autism at the pre-operational stage in Lusaka, Zambia, whose children are at Bauleni Special School, with the aim of developing a contextually responsive support framework. Guided by a constructivist paradigm and hermeneutic phenomenological design, the study involved six parents of children with autism. Data were generated through in-depth interviews and non-participant observations and analysed thematically. Findings revealed that parents experienced emotional stress, limited knowledge about autism, financial constraints, caregiving demands, inadequate access to specialised services, and limited institutional support. Parents nevertheless demonstrated resilience and employed various strategies to support their children's development. The findings informed the recommendation of a framework centred on parental empowerment, education and training, psychosocial support, accessible intervention services, inclusive education, community involvement and coordinated institutional support. The small sample of six participants may limit the transferability of the findings to parents of children with autism in other settings and contexts. However, the study contributes a contextually grounded approach to strengthening support for parents raising children with autism in Lusaka, Zambia.