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

Abstract

Parents want greater collaboration between parents and professionals. They identified a keyworker as a potential solution to the current system that is not child-centred. This would also lessen the burden associated with high levels of advocacy.

Becoming an empowered parent. How do parents successfully take up their role as a collaborative partner in their child’s specialist care?

“…It is not clear in the literature how this balance might be successfully achieved and there seems to be limited evidence exploring the link between the therapeutic relationship and the parental empowerment. In a recent study by Ryan and Quinlan (2018), it was recognised that when the therapeutic relationship was poor, parents turned to peer groups for support to become empowered to battle with professionals. While this represents empowerment of sorts, parents in the study reported that these encounters were stressful and, although not discussed in the article, it seems that the outcome was a more confrontational rather than collaborative partnership.…”

Families’ experiences of raising concerns in health care services: An interpretative phenomenological analysis

“…Their relatives often had communication problems which made it difficult for them to raise concerns themselves and meant they required another person to advocate on their behalf as the reporting process was not accessible to individuals with intellectual disabilities. The theme of "The relationship between staff, families and service user" appeared to correspond to that of "us versus them" identified by Ryan and Quinlan (2017). "The process of raising concerns" also identified problems with bureaucracy and "box ticking."…”

Asian Immigrant Parents’ Role Enactment While Accessing and Using Services for Their Child With Developmental Disabilities in the United States: A Meta-Synthesis Study

“…Findings showed, similar to U.S.born parents of children with DD, that Asian immigrant parents' perceived parental role is to help their child with DD thrive. Previous studies documented parents' behaviors that directly map onto the role facets identified in this meta-synthesis: ensuring that their child receives services (Rehm et al, 2013;Rossetti et al, 2016;Ryan & Quinlan, 2018), improving their child's performance (Hamilton et al, 2015), increasing parental knowledge (Douglas et al, 2017), planning for their child's future (Hamilton et al, 2015;Rabren & Evans, 2016;Rehm et al, 2013;Rossetti et al, 2016), and maintaining family function (Chou et al, 2016). Research on parenting children with DD has also highlighted the interrelated nature of role facets.…”