Quality Of Life for Children with
Disabilities: From Conceptual Model
to Measurement Instrument
The Children’s Quality of Life Project
Rebecca Renwick, PhD
Ann Fudge Schormans, PhD (Candidate)
Quality of Life Research Unit
University of Toronto
June, 2007
Research Team
Rebecca Renwick
Ann Fudge Schormans
Sharon Friefeld
Jay Rosenfield
Ivan Brown, Eva McPhail
Buga Novak, Ted Myerscough
Acknowledgements
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
Overview
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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
Introduction

Need for assessment & research tools
for this group of children

Existing quality of life tools

Significance of this tool

Why parents’ perspective?
Conceptual 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/intellectual 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
Conceptual Framework
Assumptions 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

Child’s & family’s quality of life interconnected

Child’s quality of life dependent on others in her/his life
Conceptual Framework
Major 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
Child – Family - Environment
Family
Environment
QOL
Child
Conceptual Framework
Quality of Life Domains
Three Major Areas of Life (BBB)
BEING
Who the child is perceived to be
BELONGING
Child’s connections to people and places
BECOMING
Child’s nurtured growth and development
Development 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
Description of Instrument

Quality of Life Measure for Children with
Developmental Disabilities: Parental Perspective
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50 items

Focus: Three major areas of life (BBB)

Interviewer- or self-administered

Suitable for phone and personal interviews
Sample Items
Being 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 child’s disability.
Belonging Items
Child’s connections to people and places
(a) Child’s Connections to People

My child plays regularly with other children.
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My child has friends.

My child is regularly invited to play with other
kids.

People who understand how my child’s
disability affects my child treat my child better
than people who do not know about her/his
disability.
Belonging Items
(b) Child’s Communication

Professionals are able to understand what my
child says/ communicates.

My child’s behavior is affected when other
people don’t understand her/his communication
(e.g., acts up, becomes quiet etc.)
Belonging Items
(c) Child’s Connections to Places

My child’s school or day care is set up in ways that
meet my child’s 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.
Belonging Items
(d) Child’s 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 doesn’t feel safe.
Becoming Items
Child’s “Nurtured” Growth and Development
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Important people in my child’s life recognize
her/his specific needs related to the disability.

People in my child’s life recognize her/his needs
related to being a child.

Important people in my child’s life do the things
that make my child happy.

People’s expectations match my child’s abilities.
Becoming Items
(Continued)

The government is supporting my family in ways
that help to meet my child’s 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 child’s growth and development.
Three five-point scales

How much does this statement apply to your
child’s situation right now?

How important is this for your child?

How satisfied are you with the way things
are?
How much does this statement
apply to your child’s situation right
now?
1
Does not
apply
2
Applies a
little
3
4
Applies
Applies
somewhat very much
5
Applies
extremely
well
How important is this for your
child?
1
Not at all
important
2
Not very
important
3
Important
4
Very
important
5
Extremely
important
How satisfied are you with the
way things are?
1
Not at all
satisfied
2
Not very
satisfied
3
Satisfied
4
Very
satisfied
5
Extremely
satisfied
Testing the Instrument
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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
Testing the Instrument
Sample Size
(n = 181)
Demographics: The Parents
Females
169 (94%)
Birth parents
137 (76%)
Average age
43 years
Annual Family Income
Diverse backgrounds
Modal $40
Category
– $79.9 K
Demographics: The Children
Gender
Age
Males
123 (68%)
3 - 5 years
41 (23%)
6–8
59 (33%)
9 – 12
80 (44%)
Range of disabilities
Instrument 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
Instrument Properties (2)

Internal Reliability
• Cronbach’s 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
Descriptive Statistics
Means (Standard Deviations)
Applies
Importance Satisfaction
Being
3.43 (.56)
4.19 (.51)
3.41 (.83)
Belonging
3.78 (.44)
4.54 (.35)
3.62 (.60)
Becoming
3.62 (.63)
4.66 (.37)
3.41 (.76)
All Items
3.69 (.45)
4.55 (.32)
3.54 (.63)
Cronbach’s Alpha Coefficients
Applies
Importance Satisfaction
Being
.42
.60
.85
Belonging
.81
.89
.92
Becoming
.88
.89
.93
All Items
.90
.93
.96
Correlations
QOLM with WEEFIM® Instruments
WEEFIM® Instrument Quotients
Self-care
Mobility
Cognition
Total
ns
ns
.16 to .31**
ns
Belonging
.16* to .37
ns
.03 to .37** .08 to .32**
Becoming
ns
ns
-.06 to .29**
.14 to .26**
ns
-.01 to .36** .06 to .22**
QOLM
Being
All Items
** p<= 0.05 (2-tailed)
* p<= 0.01 (2-tailed)
ns non-significant and r<.16
ns
Correlations*
QOLM with CHQ-P28
QOL Domains
Range of Correlations with
Child Health Questionnaire Scales
Applies
.18 to .42
Importance
.15 to .46
Satisfaction
.17 to .49
All Items
.16 to .50
* Only correlations with p< .05 are reported
Factor Analyses
Summary 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
Significance
Limitations
Future Directions
For more information, contact us at:
Quality of Life Research Unit
University of Toronto
www.utoronto.ca/qol
quality.oflife@utoronto.ca
Tel: (1) 416 978 1818
Questions?
Comments?