Overview

Children and Youth with Disabilities in Society (CYDiS) is a relatively informal grouping of people interested in collaborating on research and scholarship relevant to the health and well-being of children and youth with disability.

Hallmarks of this research and scholarship are:

  • focus on function among children with neurodisability across health conditions
  • recognition of the key role of the child’s family
  • population-orientation  
  • relevance to services and policies

CYDiS also aspires to contribute to methodological aspects of studying and improving health and well-being among this population. 

History

CYDiS began its activities in 2006, based at what was then called the Centre for Community Child Health Research within the BC Children's Hospital Research Institute. Its activities are now distributed between Developmental Neurosciences & Child Health at the Research Institute, and the Child Development and Rehabilitation Program at Sunny Hill Health Centre for Children.

Past activities and achievements

  • Organized a waiting for services workshop to define what is needed to advance research and practice in relation to waiting for child development and rehabilitation services.
  • Studied the experience of continuity of care among families where a child has a chronic condition or disability.
  • Conducted a systematic review related to evaluation of an integrated services system for children and youth with disabilities and special needs.
  • Studied patterns and determinants of participation in social, recreational and sporting activities among children with disabilities.
  • Presented a critical analysis of terminological and epistemic issues related to diagnosis and nomenclature of fetal alcohol spectrum disorders.
  • Developed the International Classification of Functioning, Disability and Health (ICF) Core Sets for children and youth with cerebral palsy (CP).

Current activities

  • Investigation of relationships between a child’s diagnosed health condition, his or her functional characteristics, and child and family wellbeing.
  • Collaborative work with a national network investigating health of caregivers of children and youth with developmental disorders and disabilities, and including the challenge of identifying and classifying relevant children in administrative datasets.
  • Collaboration with NeuroDevNet, a national network of researchers dedicated to understanding brain development, to investigate methodologies for analyzing, manualizing and evaluating habilitative interventions for children and youth with neurodisability and their families (Project title: "To Improve Quality of Life and Functioning of Children with Neuro-developmental Disabilities: Moving Toward Activity-based Personalized Interventions")

On the horizon

  • Studies of behavior difficulties among children with neurodevelopmental disabilities: defining and categorizing, exploring commonalities across conditions; and examining impact on parents and families.
  • The next steps of the ICF Core Sets for children with CP project are to identify which outcome measures align with the content of the ICF Core Sets and create an ICF-based, psychometrically sound outcome measure for children and youth with CP. 

Publications

  1. Miller AR, Armstrong RW, Masse LC, Klassen AF, Shen J, O'Donnell ME. Waiting for child developmental and rehabilitation services: An overview of issues and needs. Dev Med Child Neurol. 2008;50(11):815-821. 
  2. Miller AR, Condin CJ, McKellin WH, Shaw N, Klassen AF, Sheps S. Continuity of care for children with complex chronic health conditions: parents' perspectives.  BMC Health Serv Res. 2009;9:242. 
  3. Klassen A, Miller A, Anderson N, Shen, J, Schiariti V, O’Donnell M. Performance measurement and improvement frameworks in health, education and social services systems: a systematic review.  Int J Qual Health Care. 2010;22(1):44-69.
  4. Mâsse, L. C., Miller, A. R., Shen, J., Schiariti, V., Roxborough, L.  Comparing participation in activities among children with disabilities. Res Dev Disabil. 2012; 33(6):2245–2254.
  5. Miller, A. R., Mâsse, L. C., Shen, J., Schiariti, V., Roxborough, L.  Diagnostic status, functional status and complexity among Canadian children with neurodevelopmental disorders and disabilities: a population-based study.  Disabil Rehabil. 2013;35(6):468-78.
  6. Mâsse, L. C., Miller, A. R., Shen, J., Schiariti, V., Roxborough, L. Patterns of participation across a range of activities among Canadian children with neurodevelopmental disorders and disabilities. Dev Med Child Neurol. 2013;55(8):729-36.
  7. Miller AR. Diagnostic nomenclature for foetal alcohol spectrum disorders: the continuing challenge of causality. Child Care Health Dev. 2013;39(6):810-5.
  8. Schiariti V, Klassen AF, Cieza A, et al. Comparing contents of outcome measures in cerebral palsy using the international classification of functioning (ICF-CY): A systematic review. Eur J Paediatr Neurol. 2014;18(1):1-12.
  9. Schiariti V, Masse LC, Cieza A, Klassen AF, Sauve K, Armstrong R, et al. Towards the development of the International Classification of Functioning core sets for children with Cerebral Palsy: a global expert survey. J Child Neurol. 2014;29(5): 582-91.
  10. Schiariti V, Sauve K, Klassen AF, O'Donnell M, Cieza A, Masse LC. 'He does not see himself as being different': The perspectives of children and caregivers on relevant areas of functioning in cerebral palsy. Dev Med Child Neurol. 2014. doi: 10.1111/dmcn.12472. [Epub ahead of print]
  11. Schiariti V, Masse LC. Relevant areas of functioning in children with Cerebral Palsy based on the International Classification of Functioning: a clinical perspective. J Child Neurol. 2014. http://dx.doi.org/10.1177/0883073814533005. [Epub ahead of print]
  12. Schiariti V, Masse LC. Identifying relevant areas of functioning in children and youth with cerebral palsy using the ICF-CY coding system: from whose perspective?. Europ J Paediatr Neurol. 2014. doi: 10.1016/j.ejpn.2014.04.009. [Epub ahead of print]