Changing Directions and Expanding Horizons: Moving towards More Inclusive Healthcare for Parents of Children with Developmental Disabilities

Abstract

Family-centred service (FCS) acknowledges the importance of family engagement in therapeutic processes and focuses on the needs of all family members. This way of thinking and practicing is becoming increasingly recognized as an optimal care delivery model for families of children with developmental disabilities (DDs). However, in most places, disability services are oftentimes ‘child-centric’, wherein family members are seen only as partners in therapy or care delivery, while their own needs are not addressed. This arises from the lack of awareness of complex and highly individual family needs by professionals with whom they interact, but also from a significant lack of service infrastructure oriented towards parent-specific needs in existing service delivery models. This concept paper highlights the known challenges associated with parenting a child with a DD and discusses the intersectionality of factors impacting parental health and well-being, with a goal of promoting more equitable, holistic, and inclusive healthcare for all family members of children with DDs.

Feasibility of a Home-Base Home Videogaming Intervention with a Family-Centered Approach for Children with Cerebral Palsy: A Randomized Multiple Baseline Single-Case Experimental Design

“…In this study, we tested a novel approach where families were actively engaged in setting individualized aPTGs in line with their context, needs and capacity. Given that "lack of time" is one of the most cited reasons for non-adherence to home-based therapy programs (32,33), this approach was selected to align with the principles of family-centred care (34,35) and to promote engagement by ensuring that the treatment plan was perceived as manageable (6, 36). The design of Bootle Blast uniquely supports this approach in that the game rewards are linked to the child's individualized aPTG.…”