Children's Quality of Life Project

Principal Investigators	Rebecca Renwick
Co-Investigators	Sharon Friefeld Jay Rosenfield Ivan Brown
Collaborating Parents	Eva McPhail Mark Latowsky Linda Fehr
Project Coordinator	Ann Fudge Schorman
Dates	2002 - January 2005
Research Associate	Buga (Zekovic) Novak
Funded by	Hospital for Sick Children

Stage 1 Report

At this stage of analysis, eleven major themes are emerging^*:

Child's Growth and Development
Child's Self-Awareness and Personal Control
Impact of the Disability on Quality of life
Safety and Security of the Child
Nature of the Child-Environment Interactions
Communication Process
Systems of Support
Parental Contribution to Child's Quality of Life
Interconnectedness of Quality of Life between Child and Family
Life Cycle Considerations and
Child's Humanity Recognised and Acted Upon by Others.

^*please note that analysis is still in progress and that these themes are provisional and subject to change

Important Observations

There is no apparent difference in the themes identified for children of the three different age groups being examined (ages 3-5 yrs., 6-8 yrs., 9-12 yrs.). Each theme appears equally relevant to parental perceptions of quality of life for children of all age groups, with the only difference being the emphasis placed upon different elements of the themes at different ages.
Each theme has both a positive and a negative aspect to it, and, as such, can potentially contribute or detract from child's perceived quality of life.

MAJOR THEMES	SUBTHEMES
Child's growth and development	Expectations of others for child's growth and development Identification, accommodation, fostering, supporting child's needs for growth and development Opportunities and experiences necessary for child's growth and development
Child's self awareness and personal control	Child's self awareness about disability and personal needs, child's awareness who supporters are, personal control over behaviour and decisions, involvement in own life, autonomy, confidence and self -respect
Impact of the disability on quality of life	Impact of the disability on the child, on the family, and on the child and family
Safety and security of the child	Parents' fears for the child Accommodations made for child's safety Consequences of safety considerations
Nature of the child - environment interactions	Levels of social interactions (immediate and extended family, friends, professionals, community, school) Characteristics of social interactions (how the child is with other people, how people are with the child, impact of the child on the environment, impact of the environment on the child) Physical environment (is it accessible, accommodating, fostering and supporting opportunities for the child)
Communication process	Channels of communication the child uses Child being understood Facilitation of communication
Systems of support	Levels of support (structural, professional, community, family) Focus of support (child, parents, siblings, family as a whole) Characteristics of support
Parental contribution to child's quality of life	Forms of parental contribution Characteristics of parental contribution
Interconnectedness of quality of life between child and family
Life cycle considerations	Future planning: different challenges at different times Hopes and fears for the future
Child's humanity recognised and acted upon by others	Identity as a child Identity as a part of the family Identity as a "disability" Identity as a child with disability Identity as a community member