Parenting a Child with a Neurodevelopmental Disorder

Peter L Rosenbaum, Monika Novak-Pavlic

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Abstract

Purpose of review: Traditional thinking and focus in 'childhood disability' have been on the child with the impairment - with the imperative to make the right diagnosis and find the right treatments. The implicit if not direct expectation was that interventions should aim to 'fix' the problems. Professionals have led the processes of investigation and management planning, with parents expected to 'comply' with professionals' recommendations. Much less attention has been paid to parents' perspectives or their wellbeing.

Recent findings: In the past two decades, we have seen a sea change in our conceptualizations of childhood disability. The WHO's framework for health (the International Classification of Functioning, Disability and Health (aka ICF)) and CanChild's 'F-words for Child Development' inform modern thinking and action. We now recognize the family as the unit of interest, with parents' voices an essential element of all aspects of management. The goals of intervention are built around the F-words ideas of function, family, fun, friendships, fitness and future.

Summary: There has been world-wide uptake of the F-words concepts, with increasing evidence of the impact of these ideas on parents and professionals alike. There are important implications of these developments on the structure, processes and content of services for children with neurodevelopmental disorders, their families and the services designed to support them.

Keywords: Child and family development; Childhood disability; F-words in child development; Family wellbeing; ICF.

© The Author(s), under exclusive licence to Springer Nature Switzerland AG 2021.

Conflict of interest statement

Conflict of InterestIn this article, Peter Rosenbaum and Monika Novak-Pavlic present and discuss CanChild’s F-words for Child Development and describe the CIHR-funded ENVISAGE study. Dr. Rosenbaum is the lead author of the original F-words paper that reported these concepts. 

All the F-words materials discussed in this paper are available for free on the authors’ website: www.canchild.ca/f-words. 

ENVISAGE is a research study underway as this paper was being written, and there are no financial implications of this work. 

Peter Rosenbaum and Monika Novak-Pavlic declare no conflicts of interest relevant to this manuscript.