Developmental Neurosciences
& Child Health

Children and Youth with Disabilities in Society (CYDiS)
Established in 2006, CYDiS is a research collaborative whose mission is to improve and enhance health and well-being, function and participation for children and youth with disabilities and their families. CYDiS aims to do this by promoting, conducting, supporting and coordinating research aimed at measuring the status of health and well-being of children and youth with disabilities and their families; understanding the nature of the special needs they have and how they are best addressed; and evaluating and improving the organization and delivery of services for this population, across all relevant service sectors; and through effective exchange and transfer of knowledge in this area.  

Core Group Members
Anton Miller, Maureen O’Donnell, Bob Armstrong, and Louise Mâsse

Affiliates
Anne Klassen and Lori Roxborough

Trainee
Veronica Schiariti

Thematic Areas of Activity
Members of the core group and affiliates collaborate with each other and with investigators at other sites in a range of projects and initiatives that support the mission of CYDiS.

Studying and Improving the Services System for Children and Youth with Disabilities
Members of CYDiS are involved in projects related to two specific aspects of services system performance—accessibility and continuity, as well as research and initiatives to promote quality improvement in services for children and youth with disabilities across service sectors, settings and agencies. 
Accessibility
Continuity
Cross-sectoral quality initiative and research

Caregivers of Children and Youth with Disabilities: Experiences and Impact
BC Continuity of Care project
Caregivers of children with cerebral palsy
Parents of children with disabilities

Quality of Life and Participation among Children and Youth with Disabilities
Participation study
ADHD study
Pediatric disability profile in BC

Knowledge Translation
Effectiveness of a knowledge translation strategy

Measurement of Function & Outcome
Measure of seated postural control
National feasibility study
Health Related Quality of Life (HRQOL) instruments
ICF core sets

Studying and Improving the Services System for Children and Youth with Disabilities

Accessibility

• The group organized a workshop to define what is needed to advance research and practice in relation to waiting for child development and rehabilitation services.  Drs. Miller and O’Donnell continue to work with national partners and stakeholders to advance research and progress in this area.  

Continuity

• Drs. Miller, Klassen and Armstrong have been studying the experience of continuity of care among families where a child has a chronic condition or disability.
  
  
• Drs. Miller and Klassen are involved in a further study of continuity of information flow for this population, which will elicit parent and provider perspectives (PI: N Shaw).

Cross-sectoral quality initiatives and research

• Drs. Klassen, Miller and O’Donnell are conducting a systematic review of material relevant to conducting an evaluation of an integrated services system for children and youth with disabilities and special needs.
  
  
• Drs. O’Donnell, Miller, Klassen and Mâsse and Ms Roxborough are working on a project to study the feasibility of, and to actually implement, a framework for ongoing evaluation of services for children and youth with disabilities across sectors in British Columbia, based on principles of quality improvement. This project builds on the systematic review above, and involves close contacts and collaboration with stakeholders in the community and key government ministries.

Caregivers of Children and Youth with Disabilities: Experiences and Impact

• The continuity of care project described above (Drs. Miller, Klassen and Armstrong) is partly aimed to get in-depth information and insight into what families of children and youth with disabilities experience in seeking and obtaining medical, social and educational services.
  
  
• Dr. O’Donnell participated in a recent study of the health of caregivers of children with cerebral palsy in Ontario (PIs: P Raina & P Rosenbaum).
  
  
• Drs. Miller and Klassen are involved in a project to study the health and well-being of parents of children with various disabilities, using Canadian national survey data (PI: J Brehaut).

Quality of Life and Participation among Children and Youth with Disabilities

• Dr. Louise Mâsse, Dr. Anton Miller, Lori Roxborough and Jane Shen are studying patterns and determinants of participation in social, recreational and sporting activities among children with disabilities. In this project, the emphasis is on children with ‘invisible’ disabilities.
  
  
• Drs. Klassen and Miller recently completed a study of quality of life among children diagnosed with attention-deficit/hyperactivity disorder (ADHD).
  
  
• Dr. Schiariti is studying the disability profile of children living in BC using 2006 Participation and Activity Limitation Survey data.

Knowledge Translation

• Lori Roxborough is involved in a multicentre study of the effectiveness of a knowledge translation strategy which uses physiotherapy knowledge brokers to assist with moving motor growth research into practice (PIs: D Russell & P Rosenbaum).

Measurement of Function & Outcome

• Lori Roxborough and Maureen O’Donnell are conducting a methodological study that examines the responsiveness of a new measure of seated postural control for children with neuromotor disabilities.
  
  
• Drs. Miller and O’Donnell have been participating in a national feasibility study of an instrument to evaluate service needs of children with special needs that can be used across the range of settings.
  
  
• Dr. Schiariti and co-investigators linked the content of HRQOL measurements for children and youth with Cerebral Palsy to the International Classification of Functioning, Disability and Health children and youth version (ICF-CY) to examine whether the content of the HRQOL instruments is represented by the ICF-CY categories. Five disease specific and 3 generic measures were identified. The authors found that the ICF-CY provided an international accepted, structured framework for the content comparison of CP specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures. The CPS ICF poster was presented at Canadian Pediatric Society meeting in June 2009.
  
  
• Dr. Schiariti is leading the development of the ICF-CY core sets for children and youth with Cerebral Palsy. This research project is a collaboration between the Department of Pediatrics (UBC) and the ICF Research Branch of the World Health Organization (WHO) Collaborating Center for the Family of International Classifications at the German Institute of Medical Documentation and Information. 

For more information, please contact
Jane Shen | Research Coordinator

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Last updated: 06/28/2010