EXPLORING WAYS TO SUPPORT PARENTS OF CHILDREN WITH DEVELOPMENTAL DISABILITIES

Abstract

Family-centred service (FCS), which acknowledges the importance of family engagement in therapeutic processes and focuses on needs of all family members, is increasingly being recognized as an optimal care delivery model for families of children with developmental disabilities. However, services for families are oftentimes ‘child-centric’, wherein family members are seen as partners in therapy or care delivery only, while their own or family 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 services oriented toward parent-specific needs in current delivery models. This thesis aims to address this knowledge gap and provides solutions for parental support in the context of pediatric developmental rehabilitation, which might also be applicable to other settings (e.g., community, education). The objectives of this thesis were: (a) to conduct a systematic review synthesizing randomized controlled trials aiming to address parents’ physical, psychological and socioeconomic well-being; (b) to perform cross-cultural and language adaptation and proof-of-concept pilot exploration of an innovative, strengths-based support program ‘ENabling VISions And Growing Expectation’ (ENVISAGE) for parents of children with neurodevelopmental disabilities in Croatia; (c) to refine the Croatian version of the program according to the pilot study results; (d) to run the first set of ENVISAGE workshops and evaluate their impact on Croatian parents’ perception of self, their child with a disability and their family; and (e) to learn about participants’ experience with the program. The findings show that interventions aiming to improve parents’ well-being have limited but promising effectiveness on parents’ health and well-being outcomes. ENVISAGE has proven to be a comprehensive, acceptable, usable, feasible and impactful program for parents of children with developmental disabilities in Croatia.