Work in Progress: Parenting Children with Disabilities

Abstract

A grounded theory approach was used in this study to explore the individual needs of parents raising a child diagnosed with disability. The focus was on what parents regarded as their personal and support needs, how they met them and how they would have ideally liked to meet them. Of particular interest were the strategies parents developed and implemented in order to manage and meet their personal and support needs to achieve some sense of normality in their family lives. Parents not only have support needs specific to the challenges of accepting and raising a child with a disability but more wide ranging personal needs that for the most part are neither understood nor recognised by health professionals and service providers. Existing research has primarily examined families of children with disabilities from the perspective of health professionals. There was almost no research to guide health professionals about the involvement of parents in decisions about interventions to secure the child’s future and family viability. Much of the established research has approached issues for parents from the perspective of the child’s health and medical or rehabilitative needs, rather than meeting parents’ needs and the processes of “normalising” family function. Research has failed to consider what parents perceive they need to enable them to cope and how to support the family unit so that a diagnosis of disability does not ultimately destroy the relationships within it.