A recent paper from CanChild has reignited a discussion among the Leckey clinical team – one which I’m sure is familiar to many therapists – how to apply the ICF-CY in everyday practice?
The paper, ‘Parenting a Child with a Neurodevelopmental Disorder’ (Rosenbaum and Novak-Palik, 2021) explores the transformative effect that the ICF-CY framework and the F-words have had on childhood disability. It looks beyond the diagnosis and ‘fixing’ the child through intervention, to understanding the importance of parent perspectives and the role of the family unit as essential elements in paediatric development.
The paper reviews the many assumptions entrenched in paediatric disability, analysing whether these ‘premises’ still serve a purpose. For example, most clinical organisations, and thus their members, follow a child-centric-care approach. Although undoubtedly well-intentioned, the concern with this approach is that if the child is the sole focus, then the bigger picture is missed. The child is part of a complex family unit, where the external social, emotional and financial pressures increase with disability. The paper argues for a family-centred approach which has been evidenced to reduce stress and increase satisfaction.
While this shift in focus makes sense, I think many professionals feel that with staff shortages and limited client contact hours, it can be difficult to develop the ‘respectful trusting relationships with families’ which are needed for success. We are left with the conundrum - do we give fewer families the higher level of input they deserve or spread our time to impact as many children as we can?
Another point of discussion centres on the term ‘neurodevelopmental disability’ with a reminder that the first word ‘developmental’ is as important, if not more so, than the second, ‘disability’. Children are constantly growing and changing, and what happens today will impact what is possible tomorrow. Although, the article infers cognitive development, my thoughts wandered to physical development, namely the importance of early active weight-bearing for improved hip joint formation. By supporting children to be upright and moving at chronologically equivalent age we can influence bone size and shape thereby potentially preventing issues in the future.
Finally, the paper discusses the need to move away from the idea of ‘rehabilitation’ for children with a disability towards a concrete focus on development. While adult rehab generally comes after a life-changing event and is to be encouraged, in children the focus needs to be on promoting function, rather than a return to a state that was never there in the first place. This leads on to a discussion on the need to shift focus from what is ‘normal’ - that is the usual time and manner that skills appear (milestones) - since this model does not recognize the wide range of variation away from the average, thus creating additional worry for parents when things fall outside the norm. However, Novak et al (2017) showed that 86% of parents of a child with CP suspect it before the clinical diagnosis is made. So, whether through the internet or common knowledge, parents already have a good understanding of the timing and manner of typical development and are best placed to suspect a delay and flag it to enable a clinical diagnosis to be made.
Overall, a valuable paper to highlight how the understanding of paediatric disability continues to evolve and leaves us plenty of food for thought.
Access to the full Rosenbaum and Novak-Palik paper is available here: https://link.springer.com/article/10.1007/s40474-021-00240-2
Rosenbaum, P.L., Novak-Pavlic, M. Parenting a Child with a Neurodevelopmental Disorder. Curr Dev Disord Rep (2021). https://doi.org/10.1007/s40474-021-00240-2
Novak I, Morgan C, Adde L eta l. Early, Accurate Diagnosis and Early Intervention in Cerebral Palsy. Advances in Diagnosis and Treatment. 2017;171(9):897-907JAMA Pediatrics