quality of life for children with disabilities: from conceptual model to measurement instrument...

Quality Of Life for Children with Quality Of Life for Children with Disabilities: From Conceptual Model Disabilities: From Conceptual Model

to Measurement Instrumentto Measurement Instrument

Rebecca Renwick, PhD Rebecca Renwick, PhD

Ann Fudge Schormans, PhD (Candidate)Ann Fudge Schormans, PhD (Candidate)

Quality of Life Research UnitQuality of Life Research Unit

University of TorontoUniversity of Toronto

June, 2007June, 2007

The Children’s Quality of Life ProjectThe Children’s Quality of Life Project

Research TeamResearch Team

Rebecca RenwickAnn Fudge SchormansSharon FriefeldJay RosenfieldIvan Brown, Eva McPhailBuga Novak, Ted Myerscough

AcknowledgementsAcknowledgementsParent ParticipantsParticipating OrganizationsThe Hospital for Sick Children FoundationThe Cloverleaf FoundationStudent Research AssistantsDepartment of Occupational Science & Occupational Therapy, University of Toronto and

Ted Myerscough for slide design

Frances Fudge Schormans whose

images appear in these slides

OverviewOverview

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

IntroductionIntroduction

Need for assessment & research tools for this group of children

Existing quality of life tools

Significance of this tool

Why parents’ perspective?

Conceptual Framework Conceptual Framework for Instrumentfor 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 FrameworkConceptual FrameworkAssumptionsAssumptions about Quality of Life 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 FrameworkConceptual FrameworkMajor Elements of Quality of LifeMajor 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 LifePoorer Fit = Poorer Quality of Life

Child – Family - EnvironmentChild – Family - Environment

Environment Family

Child

QOL

Conceptual FrameworkConceptual FrameworkQuality of Life DomainsQuality of Life Domains

BEINGWho the child is perceived to be

BELONGINGChild’s connections to people and places

BECOMINGChild’s nurtured growth and development

Three Major Areas of Life (BBB)Three Major Areas of Life (BBB)

Development of InstrumentDevelopment 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 InstrumentDescription 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 ItemsSample Items

BeingBeing Items Items Who the child is perceived to beWho 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.

BelongingBelonging Items ItemsChild’s Child’s connections to people and placesconnections to people and places

(a)(a) Child’s Child’s CConnections to onnections to PPeopleeople

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 child’s disability affects my child treat my child better than people who do not know about her/his disability.

BelongingBelonging Items Items(b) (b) Child’s Child’s CCommunicationommunication

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.)

BelongingBelonging Items Items(c) (c) Child’s Child’s CConnections to onnections to PPlaceslaces

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.

BelongingBelonging Items Items(d) (d) Child’s Child’s SSafety and afety and SSecurityecurity

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 ItemsBecoming ItemsChild’s “Nurtured” Growth and DevelopmentChild’s “Nurtured” Growth and Development

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.

BecomingBecoming Items Items (Continued)(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 scalesThree 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 How much does this statement apply to your child’s situation right apply to your child’s situation right now?now?

1Does not

apply

2Applies a

little

3 Applies

somewhat

4 Applies

very much

5Applies

extremely well

How important is this for your How important is this for your child?child?

1Not at all important

2Not very important

3 Important

4 Very

important

5Extremely important

How satisfied are you with the How satisfied are you with the way things are?way things are?

1Not at all satisfied

2Not very satisfied

3 Satisfied

4 Very

satisfied

5Extremely satisfied

Testing the InstrumentTesting 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 InstrumentTesting the Instrument

Sample Size

(n = 181)

Demographics: The ParentsDemographics: The Parents

Females 169 (94%)

Birth parents 137 (76%)

Average age 43 years

Annual Family Income

Modal Category

$40 – $79.9 K

Diverse backgrounds

Demographics: The ChildrenDemographics: The Children

Gender Males 123 (68%)

Age 3 - 5 years 41 (23%)

6 – 8 59 (33%)

9 – 12 80 (44%)

Range of disabilities

Instrument PropertiesInstrument Properties (1)(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)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 StatisticsDescriptive StatisticsMeans (Standard Deviations)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 CoefficientsCronbach’s Alpha Coefficients

Applies Importance Satisfaction

Being .42 .60 .85

Belonging .81 .89 .92

Becoming .88 .89 .93

All Items .90 .93 .96

CorrelationsCorrelationsQOLM with WEEFIMQOLM with WEEFIM® Instruments Instruments

QOLM

WEEFIM® Instrument Quotients

Self-care Mobility Cognition Total

Being ns ns .16 to .31** ns

Belonging .16* to .37 ns .03 to .37** .08 to .32**

Becoming ns ns -.06 to .29** ns

All Items .14 to .26** ns -.01 to .36** .06 to .22**

** p<= 0.05 (2-tailed) * p<= 0.01 (2-tailed) ns non-significant and r<.16

Correlations*Correlations*QOLM with CHQ-P28QOLM with CHQ-P28

QOL DomainsRange 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 AnalysesFactor AnalysesSummary of ResultsSummary of Results

3 analyses:Applies, Importance, Satisfaction

Complex resultsResults for Satisfaction Scores

– Domains generally confirmed– Some re-alignment of items– Suggests items to exclude

SignificanceSignificance

LimitationsLimitations

Future DirectionsFuture Directions

For more information, contact us at:For more information, contact us at:Quality of Life Research UnitQuality of Life Research Unit

University of TorontoUniversity of Torontowww.utoronto.ca/qolwww.utoronto.ca/qol

quality.oflife@utoronto.caquality.oflife@utoronto.caTel: (1) 416 978 1818Tel: (1) 416 978 1818

Questions?Questions?Comments?Comments?