A model of well-being for children with neurodevelopmental disorders: Parental perceptions of functioning, services, and support.

BACKGROUND

Both child function and supports and services have been found to impact the well-being of parents of children with neurodevelopmental disorders (NDD). The relationship between function and services and the well-being of children with NDD is less well-understood and is important to clarify in order to effect program and service change.

METHODS

The current project assessed whether child function as well as the adequacy of formal supports and services provided to children and their families were predictive of child well-being. Well-being was assessed using a measure of quality of life developed for use with children with NDD. Data from 234 parents were analysed using structural equation modelling.

RESULTS

Each predictor was found to load significantly on the overall outcome variable of well-being. Parent concerns about child function were significantly related to child well-being; parents who reported more concerns about their children's functioning reported lower levels of child well-being. Unmet needs for formal supports and services were also significantly related to child well-being; parents who reported that more of their children's and family's service needs were unmet reported lower child well-being. An indirect relationship was also found between child function and child well-being. When parents reported that their formal support needs were adequately met, their children's functional difficulties had a lower impact on parent perceptions of their children's overall well-being.

CONCLUSIONS

Taken together, the results of the current study enrich our understanding of well-being for children with NDD. Discussion focuses on the service implications for children with NDD and their families.