ChildDevelopmentRehab.Quality of Life for Children with Developmental Disabilities

Last modified by Support on 2012/03/01 11:09

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Research Recap

Quality of Life for Children with Developmental Disabilities: A new way to understand what matters most

Summary prepared by: Dr. Rebecca Renwick and Ann Fudge Schormans

Why did we do this study?
We wanted to understand what makes life good, and not so good for children with developmental disabilities and delays. Then we wanted to measure, from their parents’ perspectives, children’s quality of life. Our intention is for parents, service providers and policy makers to use this information to offer activities, supports, and programs that will make life better for children with developmental disabilities. We also wanted a tool for researchers to measure quality of life.

How did we do the research?
Phase 1: Gather information about quality of life
Thirty parents of thirty-one children with developmental disabilities answered interview questions about what makes life good and not so good for their children. We used an established qualitative research method to analyze the information collected from the parents.

What did we find?
We organized the parents’ comments into themes and created a framework to show how the three contributors form the foundation for quality of life. The three basic contributors are:
        1. The child
        2. The child’s parental and family environment
        3. The broader environment (e.g. neighbourhood, community, school, service providers and other institutions such as governments).

The better the fit between these three contributors, the better a child’s quality of life.

We also identified three key aspects or domains of quality of life:
        1. Being – who the child is perceived to be or the child’s identity. This aspect of a child’s life will be good if others treat her as a child rather than as a disability.
        2. Belonging – the child’s connections to people and places. This part of a child’s life will be better if he has a safe and secure environment; is easily understood by others; enjoys positive interactions with important people (e.g. family, friends and teachers); and there is a good fit between the child and his environment.
        3. Becoming – the child’s nurtured growth and development. Current major needs must be identified and accommodated to enhance this aspect of a child’s life.

Phase II: Develop a new measurement tool for quality of life
We took the information parents gave us in Phase I and created a measurement tool. One hundred and eight-six (186) parents completed this test questionnaire and answered some additional questions. Established statistical tests showed it was a sound measurement. These results plus reviews by parents, professionals and researchers helped us refine and decide upon the final tool. It is called the Children’s Quality of Life Interview (CQOLI) and has 50 questions that parents can answer on their own or in an interview with a health care or other professional (for example, professionals in the social services, education, research, etc.).

How is this study different?
In looking at quality of life for children with developmental disabilities and delays, this study was distinctive because it was a participatory research study; produced a new framework for understanding quality of life for children, ages 3 to 12, with developmental disabilities from the perspective of their parents; and developed a useful and relevant measurement tool, the Children’s Quality of Life Interview (CQOLI)

What do these new findings mean?

  • Parents and families can fill out the questionnaire to better understand what will make life better for their child. They may reflect on specific strengths and gaps in their child’s environments and create action plans. They could use this information to influence the services they access and advocate for.
  • Policy makers can use the model to understand the factors that influence quality of life including the connections between the factors and domains; and to make informed decisions about community resource supports for children and their families. Evaluate policies and programs that aim to improve quality of life for this group of children.
  • Health care and service providers are encouraged to incorporate the questionnaire into assessments and interviews with parents to guide interventions. They can also use the questionnaire to evaluate programs and services; and to make choices about program development and inform plans of care.
  • Researchers can use the measurement tool in research studies.

What’s next?
Some members of our research team plan to continue to test and validate the new measurement tool. They will also develop a way to capture the perspectives of children and teens with developmental disabilities about their own quality of life.

For more information, please contact:
Dr. Rebecca Renwick, Quality of Life Research Unit
Department of Occupational Science and Occupational Therapy, University of Toronto
Email: r.renwick@utoronto.ca Telephone: 416-978-1818

Copies of the tool: Contact the Quality of Life Research Unit directly at quality.oflife@utoronto.ca. For further information, check the website: www.utoronto.ca/qol

How was this study funded?
The Hospital for Sick Children Foundation, The Cloverleaf Foundation, University of Toronto

Who did this study?
Lead Researcher: Rebecca Renwick
Researchers: Sharon Friefeld, Jay Rosenfield and Ivan Brown
Parents on Research Team: Eva McPhail, Mark Latowsky and Linda Fehr
Project Coordinator: Ann Fudge Schormans
Research Associate: Buga (Zekovic) Novak
Technical Specialist: Ted Myerscough

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