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Applying ethnographic methodologies & ecology to unveil dimensions of sleep problems in children & youth with neurodevelopmental conditions

University of British Columbia

Willis Ekbom disease/restless legs syndrome is a relatively well-known neurological disorder in adult and paediatric medicine; however, the possibility of its presentation as familial early onset chronic intractable insomnia has not yet been recognized. I investigated the possible causes of intractable insomnia in children and youth with neurodevelopmental conditions. Through my studies of medical anthropology and educational psychology, I learned to apply qualitative methodologies in my clinical explorations, namely: a) ethnographic exploration of the ecology of paediatric intractable insomnia; b) the operationalization of this ethnographic exploration as a therapeutic emplotment concept in clinical practice, and c) the creation of new methodological tests and tools for structured behavioural observations as further development of the therapeutic emplotment concept. Application of these concepts led to the development of a functional sleep and wake-behaviours assessment model. This model exceeds the current clinical practice of categorical sleep and/or wake diagnoses and the predominantly daytime-focused explanatory models of developmental paediatrics, child psychiatry and mental health. My research has privileged me with becoming the first physician to identify Willis Ekbom disease/restless legs syndrome in children with neurodevelopmental conditions, who suffer from early onset chronic intractable insomnia, in a methodologically reproducible way. This research also enabled me to demonstrate that unrecognized Willis Ekbom disease/restless legs syndrome leads to cascades of medical diagnoses and medication prescriptions causing iatrogenic harm. Weaning children off medications and increasing their wellbeing and performance after addressing their sleep problems became the proof of concept. The Willis Ekbom disease/restless legs syndrome story in children with neurodevelopmental conditions is a modern parable, illustrating how conventional categorical diagnoses with overemphasis on daytime behaviours can produce systemic gaps in healthcare. While conventional medicine facilitates a spectrum of diagnoses that are applied based on training culture, symptoms that are not in alignment with the standard repertoire are not recognized and diagnoses are missed. Understanding this parable and finding applicable answers for how such systemic errors can be avoided in mainstream medicine in the future has taken me seven years, and is still a work in progress.

Text

2016-01-26

Attribution-NonCommercial-NoDerivs 2.5 Canada

http://hdl.handle.net/2429/56696

Interdisciplinary Studies

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-nd/2.5/ca/