Parenting individuals with intellectual and developmental disabilities in South India

Purpose: There is limited research on the needs and expectations of parents of children with Intellectual and Developmental Disabilities (IDD) and associated complex communication needs (CCNs) in South India. The current paper will present the findings from a study that explored parents' needs and expectations, including those related to rehabilitation. Method: This study adopted an Interpretative Phenomenological Analysis framework to understand the needs and expectations of 16 parents of 15 children with IDD and associated CCNs. Data were analyzed for the whole group, and two subgroups: parents of children 12 years or younger, and parents of adults and adolescents older than 12 years. Result: Data analysis highlighted the following: (1) unmet or undermet needs and expectations with regard to children's social participation, societal and familial support, childcare needs, financial requirements, and need for information; (2) changing needs and expectations of parents as their children grow older; (3) inadequacy of social participation and interaction opportunities for the participants' children. Conclusion: It was concluded that rehabilitation providers including Speech Language Pathologists (SLPs) need to be aware of parents' needs and expectations and collaborate with the families to attain rehabilitation goals that facilitate social participation.