Perspectives on “Disease” and “Disability” in Child Health: The Case of Childhood Neurodisability

Abstract

Chronic health conditions are often associated with what is termed disability. Traditional thinking has focused on diagnosis and treatment of chronic diseases and disorders, with less attention to people’s functional abilities and their contextual determinants. Understanding all of these factors is integral to addressing the predicaments and needs of persons with chronic conditions. However, these complementary yet distinct “worldviews” reflected in what we call disease and disability perspectives often remain, at best, only vaguely articulated. In this paper, we explore and expand on these perspectives in light of conceptual advances, specifically the framework of the World Health Organization’s International Classification of Functioning, Disability and Health, and their epistemic underpinnings with reference to Wilhelm Windelband’s notions of nomothetic and idiographic types of knowledge. Our primary focus is the children with neurodisability – life-long conditions that onset early in life and have functional consequences that impact developmental trajectories. We critically review and analyze conceptual material, along with clinical and research evidence relevant to the experiential and clinical realities of this population, to demonstrate the limitations of a biomedically based diagnostic–therapeutic paradigm at the expense of a developmental and disability-oriented perspective. Our main aim in this paper is to argue for an explicit recognition of both disease and disability perspectives, and a more balanced and appropriate deployment of these concepts across the continuum of clinical services, research, policy-making and professional and public education in relation to children with neurodisability; we also provide concrete recommendations to advance this progressive strategy. The relevance of these aims and strategies, however, extends beyond this particular population.

Children with neurodevelopmental disorders and disabilities: a population‐based study of healthcare service utilization using administrative data

“…This study demonstrates a definition for a clinical group of children with NDD/D in a provincial linked administrative health data and examines their healthcare service utilization versus children without NDD/D. A unique contribution of this study is the identification of NDD/D in administrative data based on a definition that attempts to harmonize diagnosis information with functional domains in line with contemporary conceptualizations of disability . Overall, the findings suggest that, with some limitations, this definition can yield useful information when applied to Canadian provincial administrative health data.…”

“…Most existing work in this area has used lists of chronic health conditions but has not focused on NDD/D because of the lack of functional impairment information in most administrative data. Yet, the consensus‐based definition of neurodisability challenges researchers to find an approach to grouping health conditions under domains of functioning associated with NDD/D in an attempt to close the gap between specific conditions and functional limitations associated with them …”

“…One approach consistent with the consensus‐based definition of neurodisability of Morris et al is the definition of NDD/D of Miller et al, which is based on both diagnostic and functional status . This operationalization attempts to ‘harmonize’ diagnosis or condition‐based ways of ascertainment, with functional domains, as befits the contemporary conceptualization of disability presented in the ICF . For example, in the absence of functional status information, diagnostic data can be reasonably aligned with an identified functional domain (e.g.…”

Movement‐based interventions for preschool‐age children with, or at risk of, motor impairment: a systematic review

“…balance difficulties riding a bicycle). 16,17 A focus on functional outcomes is supported by findings that a child's functional characteristics, such as their ability to perform motor skills, better explain a child's support needs than diagnosis. 18,19 There is therefore a compelling argument for considering interventions from the perspective of the desired outcome, to improve motor function, rather than the diagnosis of the child.…”

Diagnosis in developmental disability: a perennial challenge, and a proposed middle ground

“…The search for the biopsychosocial underpinnings (perhaps the ‘causes’) of children's impairments is very important for both individual children and families, and for people with phenomenological characteristics similar to those children. Simultaneously, however, we need to embrace the lessons from Pless and Pinkerton, and the signal research of Ruth Stein and colleagues, about the huge advantages of adopting a non‐categorical approach to our work . This way of thinking encourages all of us to look beyond individual diagnoses in order to recognize the many ways that all the conditions with which we work share common elements.…”