Project 171125

Maximizing quality of life for children and youth is a key goal of the Ontario Association of Children's Rehabilitation Services (OACRS) treatment centres. Many supports and interventions are directed toward this goal. It is critical for clients, service providers, and policy makers to understand the key factors that predict changes in life quality for children and youth with chronic conditions. These factors may include personal (e.g., children's emotional functioning), interpersonal (e.g., children's social participation), or environmental factors (e.g., supportive community environments). This study will address two unexplored research areas: 1) the changing nature of quality of life for youth with chronic conditions over a three-year period, and 2) the factors that predict change in quality of life for these youth. Six hundred youth aged 11 to 17 years (and their parents) who receive services from OACRS centres will participate. Individuals in this age span are expected to experience key life transitions during the three-year period (e.g., changes in school, independence expectations, health and mobility, role within the family and community). Participants will be assessed at four time points. Children and parents will each complete a brief questionnaire that includes two validated measures of quality of life, in addition to a set of measures of factors thought to predict changes in life quality. These measures focus on children's physical and emotional functioning, self-determination, spirituality, social participation, and family and environmental supports. Advanced statistical analysis procedures will be used to evaluate changes in quality of life and to determine predictors of change. The results will inform policy decisions about where to best allocate funds. This information is vital to ensure rehabilitation and allied services address those areas of children's lives that are most likely to maximize their quality of life.

longitudinal multi-site study using latent growth curve modeling to identify predictors of quality of life in youth with chronic conditions