Quality Of Life for Children with Disabilities: From Conceptual Model to Measurement Instrument Rebecca Renwick, PhD Rebecca Renwick, PhD Ann Fudge Schormans, PhD (Candidate) Quality of Life Research Unit University of Toronto June, 2007 The Children’s Quality of Life Project

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 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 Environment Family Child QOL

Conceptual Framework Quality of Life Domains BEING Who the child is perceived to be BELONGING Child’s connections to people and places BECOMING Child’s nurtured growth and development Three Major Areas of Life (BBB)

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 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. 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 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 Applies somewhat 4 Applies 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

Demographics: The Children

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) AppliesImportanceSatisfaction Being3.43 (.56)4.19 (.51)3.41 (.83) Belonging3.78 (.44)4.54 (.35)3.62 (.60) Becoming3.62 (.63)4.66 (.37)3.41 (.76) All Items3.69 (.45)4.55 (.32)3.54 (.63)

Cronbach’s Alpha Coefficients AppliesImportanceSatisfaction Being Belonging Becoming All Items

Correlations QOLM with WEEFIM Instruments Correlations QOLM with WEEFIM ® Instruments QOLM WEEFIM ® Instrument Quotients Self-careMobilityCognitionTotal Beingns.16 to.31**ns Belonging.16* to.37ns.03 to.37**.08 to.32** Becomingns -.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* 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 Tel: (1) For more information, contact us at: Quality of Life Research Unit University of Toronto Tel: (1)

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