Title: Quality Of Life for Children with Disabilities: From Conceptual Model to Measurement Instrument
1Quality Of Life for Children with Disabilities
From Conceptual Model to Measurement Instrument
The Childrens Quality of Life Project
Rebecca Renwick, PhD Ann Fudge Schormans, PhD
(Candidate) Quality of Life Research
Unit University of Toronto June, 2007
2Research Team
- Rebecca Renwick
- Ann Fudge Schormans
- Sharon Friefeld
- Jay Rosenfield
- Ivan Brown, Eva McPhail
- Buga Novak, Ted Myerscough
3Acknowledgements
- Parent Participants
- Participating Organizations
- The Hospital for Sick Children Foundation
- The Cloverleaf Foundation
- Student Research Assistants
- Department of Occupational Science
- Occupational Therapy, University of Toronto
-
- and
Ted Myerscough for slide
design
Frances Fudge Schormans whose
images appear in these
slides
4Overview
- Introduction and Background
- Conceptual Framework for Instrument
- Development of Instrument Items
- Sample Items and Rating Scales
- Testing the Instrument
- Overview of Results
- Discussion and Future Directions
5(No Transcript)
6Introduction
- Need for assessment research tools for this
group of children - Existing quality of life tools
- Significance of this tool
- Why parents perspective?
7Conceptual Framework for Instrument
- Research team included parents of children with
developmental/ intellectual disabilities (ID/DD) - Conceptual framework based on in-depth interviews
with 30 birth, adoptive, foster parents,
kinship carers - Focused on children with developmental/intellectua
l disabilities (ID/DD), aged 3 to 12 years - Developed from qualitative analysis of interview
data (modified grounded theory methodology) - Member checking and verification of major
concepts and themes emerging form analysis
8Conceptual FrameworkAssumptions about Quality of
Life
- Holistic concept with many dimensions
- Both a dynamic process an outcome
- Can change over time
- Same domains for children from 3 to 12 years
- Childs familys quality of life interconnected
- Childs quality of life dependent on others in
her/his life
9Conceptual FrameworkMajor Elements of Quality of
Life
- Three elements
- CHILD, FAMILY, LARGER ENVIRONMENT
- Quality of life arises from dynamic relationship
among these three elements - Fit among elements determines quality of life
- Better Fit Better Quality of Life
- Poorer Fit Poorer Quality of Life
10Child Family - Environment
Family
Environment
QOL
Child
11Conceptual FrameworkQuality of Life Domains
Three Major Areas of Life (BBB)
- BEING
- Who the child is perceived to be
- BELONGING
- Childs connections to people and places
- BECOMING
- Childs nurtured growth and development
12Development of Instrument
- Conceptual framework reflects parents
perspective - Items include phrases and expressions used by
parents interviewed - Reviewed by parents, professionals, researchers
- Pilot-tested with parents
13Description of Instrument
- Quality of Life Measure for Children with
Developmental Disabilities Parental Perspective - 50 items
- Focus Three major areas of life (BBB)
- Interviewer- or self-administered
- Suitable for phone and personal interviews
14Sample Items
15Being Items Who the child is perceived to be
- Other people treat my child first and foremost as
a child. - Other people treat my child as a child with a
disability. - Other people see only my childs disability.
16Belonging ItemsChilds connections to people and
places(a) Childs Connections to People
- My child plays regularly with other children.
- My child has friends.
- My child is regularly invited to play with other
kids. - People who understand how my childs disability
affects my child treat my child better than
people who do not know about her/his disability.
17Belonging Items(b) Childs Communication
- Professionals are able to understand what my
child says/ communicates. - My childs behavior is affected when other people
dont understand her/his communication (e.g.,
acts up, becomes quiet etc.)
18Belonging Items(c) Childs Connections to Places
- My childs school or day care is set up in ways
that meet my childs needs. (e.g., the child can
use the bathroom, access lockers, a time-out is
available if required, elevators are available if
needed, etc.) - Professional services suitable for my child are
available to her/him. (e.g., doctors, dentists,
therapists, etc.) - Professional services suitable for my child are
easily accessible.
19Belonging Items(d) Childs Safety and Security
- My child feels secure with certain people s/he
sees often. - My child feels safe playing with other kids.
- My child avoids doing certain activities because
s/he doesnt feel safe.
20Becoming ItemsChilds Nurtured Growth and
Development
- Important people in my childs life recognize
her/his specific needs related to the disability.
- People in my childs life recognize her/his needs
related to being a child. - Important people in my childs life do the things
that make my child happy. - Peoples expectations match my childs abilities.
21Becoming Items (Continued)
- The government is supporting my family in ways
that help to meet my childs needs. - My child is supported to do the important things
in her/his life to help her/his growth and
development. - My child has opportunities to do
things/activities in her/his community that are
meaningful to her/him? - My family receives enough support to enable us to
support my childs growth and development.
22Three five-point scales
- How much does this statement apply to your
childs situation right now? - How important is this for your child?
- How satisfied are you with the way things are?
23How much does this statement apply to your
childs situation right now?
24How important is this for your child?
25How satisfied are you with the way things are?
26Testing the Instrument
- Minimum number of participants 180 parents
- Parents/carers of children with ID/DD, aged 3 to
12 years - Telephone interviews
- Other measures included in interview
- socio-demographics
- function
- health-related quality of life measures
27Testing the Instrument
28Demographics The Parents
29Demographics The Children
30Instrument Properties (1)
- Face Validity
- Item development approach
- Systematic review by parents, professionals,
researchers of item relevance and
appropriateness. - High level of agreement
- Content Validity
- Systematic review by parents, professionals,
researchers to relate items to conceptual model - High level of agreement
31Instrument Properties (2)
- Internal Reliability
- Cronbachs reliability analysis
- Most coefficients above .70
- Concurrent Validity
- Correlations with other measures of health
function - Some overlap but assesses something different
- Construct Validity
- Factor analysis
- Supports domains
- Some item realignments and exclusions
32Descriptive StatisticsMeans (Standard Deviations)
33Cronbachs Alpha Coefficients
34CorrelationsQOLM with WEEFIM Instruments
plt 0.05 (2-tailed) plt 0.01
(2-tailed) ns non-significant and
rlt.16
35CorrelationsQOLM with CHQ-P28
Only correlations with plt .05 are reported
36Factor AnalysesSummary of Results
- 3 analyses
- Applies, Importance, Satisfaction
- Complex results
- Results for Satisfaction Scores
- Domains generally confirmed
- Some re-alignment of items
- Suggests items to exclude
37SignificanceLimitationsFuture Directions
38 For more information, contact us atQuality of
Life Research UnitUniversity of
Torontowww.utoronto.ca/qolquality.oflife_at_utoront
o.caTel (1) 416 978 1818
39Questions?Comments?