Quality Of Life for Children with Disabilities: From Conceptual Model to Measurement Instrument

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Quality 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
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Research Team

• Rebecca Renwick
• Ann Fudge Schormans
• Sharon Friefeld
• Jay Rosenfield
• Ivan Brown, Eva McPhail
• Buga Novak, Ted Myerscough

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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
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Overview

• 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

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Introduction

• Need for assessment research tools for this
  group of children
• Existing quality of life tools
• Significance of this tool
• Why parents perspective?

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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/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

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Conceptual 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

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Conceptual 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

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Child Family - Environment
Family
Environment
QOL
Child
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Conceptual 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

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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

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Description 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

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Sample Items
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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 childs disability.

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Belonging 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.

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Belonging 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.)

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Belonging 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.

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Belonging 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.

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Becoming 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.

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Becoming 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.

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Three 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?

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How much does this statement apply to your
childs situation right now?
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How important is this for your child?
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How satisfied are you with the way things are?
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Testing 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

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Testing the Instrument

• Sample Size
• (n 181)

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Demographics The Parents
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Demographics The Children
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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

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Instrument 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

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Descriptive StatisticsMeans (Standard Deviations)
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Cronbachs Alpha Coefficients
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CorrelationsQOLM with WEEFIM Instruments
plt 0.05 (2-tailed) plt 0.01
(2-tailed) ns non-significant and
rlt.16
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CorrelationsQOLM with CHQ-P28
Only correlations with plt .05 are reported
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Factor 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

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SignificanceLimitationsFuture Directions
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For more information, contact us atQuality of
Life Research UnitUniversity of
Torontowww.utoronto.ca/qolquality.oflife_at_utoront
o.caTel (1) 416 978 1818
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Questions?Comments?