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.

Whoever shouts the loudest: Listening to parents of children with disabilities

“…Robert et al. () found that access to information helped parents of children with disabilities adjust emotionally, access services and improve management of their child's behaviour.…”

“…The provision of an information booklet could act as a reference point, thus reducing parental uncertainty and distress. Robert et al (2015) found that access to information helped parents of children with disabilities adjust emotionally, access services and improve management of their child's behaviour.…”

“…The perspectives of parents and caregivers are crucial to understanding how services are experienced by those receiving them (Cheak‐Zamora & Teti, ). The parents’ perspective and subjective evaluation of services are central to their well‐being and adaptation to their child's disability (Robert, Leblanc, & Boyer, ). Many studies have focused on how parents cope with the stress associated with parenting children with disabilities.…”

Factors Affecting the Health of Caregivers of Children Who Have an Intellectual/Developmental Disability

“…Formal services. The literature indicated that the use of formal services for the child with the disability can have negative impacts on families (Dowling & Dolan, 2001;Neely-Barnes & Marcenko, 2004;Robert, Leblanc, & Boyer, 2015;Rogers & Hogan, 2003). Dowling and Dolan (2001) reported that sources of anxiety included long wait lists, having to reapply regularly for services, the cost and time of travel to and from services, long wait-times at appointments, missed recreational activities for the whole family, and the lack of flexibility and responsiveness of service providers.…”

Translation and Validation of the Malay Version of the Parents’ Satisfaction Scale (PSS-M) for Assessment of Caregivers’ Satisfaction with Health Care Services for Children with Autism Spectrum Disorder

“…Client satisfaction can be based on numerous factors, such as healthcare settings, technical management, and features of interpersonal care and staff interactions [ 2 ]. Among these factors, most authors believe that the patient–staff interaction has the best effect on client satisfaction [ 3 , 4 , 5 , 6 ].…”