quality of life for children with disabilities: from conceptual model to measurement instrument...
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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
[email protected]@utoronto.caTel: (1) 416 978 1818Tel: (1) 416 978 1818
Questions?Questions?Comments?Comments?