When satisfaction is not directly related to the support services received: understanding parents' varied experiences with specialised services for children with developmental disabilities

Abstract

Accessible summary Parents of children with developmental disabilities need formal support services to help them. Their well‐being and satisfaction depend on how the support services respond to their needs. Some parents want to be more involved in decisions about support services and intervention for the best of their child's interests. Other parents believe that the child's best interest are addressed adequately by the professionals who deliver the services. Summary Parents of children with developmental disabilities (autism or intellectual disabilities) are more susceptible to stress and have a greater burden of adversity than other parents. Their well‐being and satisfaction greatly depend on the system's response of finding them formal support and the help they need. This study proposes an interpretive approach, based on the (fifteen) parents' experiences, to find and understand the strengths and weaknesses of specialised support services. Furthermore, our research aims to obtain data on parents' experiences in order to identify the conditions and the perceptions on which feeling satisfaction or dissatisfaction is based. The situations that were considered positive are all directly related to the professional concrete support parents say they received (e.g. ‘working with’ their child to improve communication with him or her, understanding his or her issues, and managing difficult behaviours). However, the overall experience of each parent has either a dominant positive or a dominant negative connotation. The parents' satisfaction or dissatisfaction appears to be constructed from two criteria: (i) whether parents see themselves as experts or nonexperts on the situation of their child and (ii) parents' opinions on the purpose or goal of the intervention or of the services they received.