Quality of Life for Youth with Chronic Health Conditions: Learning from Youths’ and Parents’ Perspectives

Last modified by Doug Maynard on 2015/04/27 21:25


This presentation describes an innovative mixed-methods study currently underway that explores the personal, interpersonal, and environmental factors that are related to perceived quality of life (QOL) for youth with chronic health conditions. Specifically, the presentation will: a) briefly describe the study; b) provide preliminary baseline findings of the longitudinal, quantitative component regarding youths’ perceived QOL and related factors; and c) present the findings of the qualitative component which focuses on the meaning of QOL, and its connection to self-determination and spirituality, from youths’ perspectives. The quantitative component gathers information from 439 youth from eight OACRS centres, aged 11 to 17 with various conditions and one of their parents. The qualitative component includes 18 youth receiving services from Thames Valley Children’s Centre.

Webinar participants will:

  1. Understand the importance of assessing youth QOL from the perspectives of youth and their parents.
  2. Be aware of key factors that are correlated with youth’s perceived QOL, from both the youths’ and their parent’s perspectives using a quantitative approach.
  3. Know how youth define QOL, self-determination, and spirituality and consider the connection youth make between these and other concepts they feel are important to their QOL using a qualitative approach.
  4. Consider how youth and family perspectives on QOL can impact clinical practice.


McDougall/Baldwin Slides:  Quality of Life for Youth with Chronic Health Conditions

Quality of Life Study Website:  http://www.tvcc.on.ca/qol


Janette McDougall is a childhood health and disability researcher at Thames Valley Children's Centre, London Ontario. She has a PhD in Rehabilitation Sciences from Western University. Janette is also an Adjunct Professor at Western University and an Adjunct Scientist at Bloorview Research Institute. She has conducted research related to: brain injury, autism, cancer, cerebral palsy, self-determination, spirituality, social support, participation, and quality of life. She has published in numerous journals and has presented at many peer-reviewed conferences.  Janette is currently principal investigator of this QOL study.  The study’s webpage includes numerous resources including downloadable pdfs of all study publications and reports: http://www.tvcc.on.ca/qol
Virginia Wright is a physical therapist and a senior scientist at Bloorview Research Institute, Toronto, Ontario. She has a PhD in Health Research Methodology and is an Associate Professor at University of Toronto. Virginia holds the Bloorview Children's Hospital Foundation Chair in Paediatric Rehabilitation (2012-2017). She has focused her research since 1990 on developing and validating outcome measures, as well as the effectiveness of pediatric rehabilitation interventions. Her research interests include: gross motor measures, quality of movement, cerebral palsy, acquired brain injury, prosthetics, and life satisfaction. Virginia is well-published, holds several grants, and has presented at many peer-reviewed conferences. She is co-principal investigator of the QOL study.
Patricia Baldwin is a clinical practice coach at Thames Valley Children’s Centre, London, Ontario. She has an undergraduate degree in occupational therapy from Queen’s University and a Masters in Theological Studies from Huron College, Western University. She is certified by the University of Toronto as a solution-focused practitioner and provides training in solution-focused coaching to numerous health care groups. Patricia has research experience in the areas of relationship-centred practice, including solution-focused coaching and clinical listening, and in quality of life, spirituality, and adolescent transitions. She has a number of peer-reviewed journal publications and has been invited to be a key note speaker at conferences. 
Created by Samantha DeLenardo on 2015/01/19 22:14