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

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
      

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 Childs & familys quality of life interconnected Childs 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

Environment QOL Family

Child

Conceptual Framework
Quality 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

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 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 childs disability.

Belonging Items
Childs 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.

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.)

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.

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.

 

Becoming Items
Childs 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.

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.

Three five-point scales five

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?

 

How much does this statement apply to your childs 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



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 Birth parents Average age Annual Family Income Diverse backgrounds
169 (94%) 137 (76%) 43 years
Modal $40 Category

$79.9 K

Demographics: The Children

Gender Age
Males

123 (68%) 41 (23%) 59 (33%) 80 (44%)

3 - 5 years 68 9 12

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
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

Descriptive Statistics
Means (Standard Deviations) Applies Being Belonging Becoming All Items 3.43 (.56) 3.78 (.44) 3.62 (.63) 3.69 (.45) Importance Satisfaction 4.19 (.51) 4.54 (.35) 4.66 (.37) 4.55 (.32) 3.41 (.83) 3.62 (.60) 3.41 (.76) 3.54 (.63)

Cronbachs Alpha Coefficients

Applies Being Belonging Becoming All Items .42 .81 .88 .90 Importance Satisfaction .60 .89 .89 .93 .85 .92 .93 .96

Correlations QOLM with WEEFIM Instruments

WEEFIM Instrument Quotients QOLM Being Belonging Becoming All Items Self-care ns .16* to .37 ns .14 to .26** Mobility ns ns ns ns Cognition .16 to .31** Total ns

.03 to .37** .08 to .32** -.06 to .29** ns

-.01 to .36** .06 to .22**

** p<= 0.05 (2-tailed) * p<= 0.01 (2-tailed)

ns non-significant and r<.16

Correlations* QOLM with CHQ-P28 CHQQOL Domains Applies Importance Satisfaction All Items Range of Correlations with Child Health Questionnaire Scales .18 to .42 .15 to .46 .17 to .49 .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?