Parental Perceptions of Family-Centred Supports for Children with Developmental Disabilities.

Abstract

Family-centred interventions have long been advocated in paediatric practice and in public health, but their implementation is rarer with children experiencing developmental disabilities. Moreover, the uptake is lower in families from more socially deprived backgrounds. Yet there is robust evidence that such interventions bring benefits to the family caregivers as well as to the affected children. The present study emerged from a support service that had been located in a rural county in Ireland in which nearly 100 families of children with intellectual and developmental disabilities had participated. Using a qualitative research methodology, interviews were conducted with 16 parents who had taken part in the service with the aim of gaining insights into the ways a family-centred service had been of value to them. The themes identified in their responses were validated in two ways. All parents were given the opportunity to provide their perceptions using a self-completion questionnaire, and nearly 50% responded. In addition, seven health and social care staff who had referred families to the project were asked their views through personal interviews. The core theme to emerge was the focus placed on family engagement by the service, with four subthemes emerging: parental confidence boosted; children developed; community connections were made; and supportive staff. These insights should help existing health and social care services to become more family-centred and inform the development of new support services in response to the high levels of unmet needs among marginalized families in even the most affluent countries.