1. CHILDREN AND YOUTH WITH CP
WHO - FAMILY OF INTERNATIONAL CLASSIFICATIONS NETWORK ANNUAL MEETING 2016
ICF CORE SETS FOR CHILDREN AND YOUTH WITH CEREBRAL PALSY: EMBRACING CULTURAL DIFFERENCES
8-12 October Tokyo, Japan
Poster Number
WHO/CTS to insert
Verónica Schiariti 1, Shahnaz H Ibrahim 2, Anjan Bhattacharya 3, Maria Król 4
1 NeuroDevNet & Child and Family Research Institute, University of British Columbia, Canada;
2 Department of Pediatrics, Child Health Aga Khan University, Karachi, Pakistan; 3 Apollo Gleneagles Hospital, Kolkata, India; The Step by Step Association for Help to Disabled Children in Zamość, Poland
The newly developed ICF Core Sets for children and youth with Cerebral Palsy (CP) guide comprehensive functional assessments, tailoring the delivery of meaningful interventions. To ensure optimal applicability across social, cultural and economic contexts, cultural validations are needed. This study describes the first international cultural validation project of the ICF Core Sets for children and youth with CP – from the health professionals’ and caregivers’ perspectives in Pakistan, India, and Poland.
Abstract
Validation from the professionals’ perspectives includes a consensus-building, 3-round, survey with medical and health allied experts using the Delphi technique.
Validation from the caregivers’ & clients’ perspectives includes a qualitative study with children and youth with CP and/or their caregivers. Sampling follows the maximum variation strategy.
Validation was conducted between Nov 2014 and May 2016.
Comprehensive Core Set: Professionals in Pakistan and India validated the majority of the Body Functions and A&P categories, 69% and 67% respectively. In contrast, the clients in Poland validated the majority of the A&P and environmental factors categories (72%)
Brief Core Sets: the vast majority of categories were validated in all three countries (≥92%)
Introduction
Conclusions
Cerebral Palsy (CP) is the leading cause of severe physical disability in childhood.
CP is a complex disorder; individuals with CP rely on many health, educational and social services. To improve their functional status, quality of life (QOL) and educational outcomes, we must first understand the functional abilities of individuals living with CP and the challenges they face in performing everyday activities.
Until now, there was no agreed-on approach or measure to systematically describe the functional profile of children and youth with CP. This gap can be filled by applying the ICF framework in everyday assessments and interventions for children and youth with CP.
Our research team at the University of British Columbia (Dr Schiariti project leader) - in collaboration with the ICF Research Branch of WHO-FIC in Germany - led the development of the ICF Core Sets for children and youth with CP.
The international community has expressed growing interest in implementing these pediatric ICF-based tools in day-to-day practice. However; to ensure optimal applicability across social, cultural and economic contexts cultural validations are needed.
Conclusions
The cultural validation in Pakistan, India and Poland were possible due a collaborative multidisciplinary effort by national CP experts. These studies show that the cultural validation of the ICF Core Sets for children and youth with CP is needed from multiple perspectives before starting the implementation process – to ensure optimal applicability in different socio-cultural and economic contexts.
Children
and youth with CP,
Step by Step
Association in Zamość, Poland
ICF CORE SETS
CHILDREN AND YOUTH WITH CP
Results
In Pakistan, 114 health and health allied professionals from three centers participated in the Delphi exercise.
In India, 150 multidisciplinary professionals - with ample experience working with CP - from multiple centers participated in the Delphi survey.
In Poland, the leading pediatric rehabilitation center based in Zamość conducted 20 individual interviews (10 parents + 10 youths with CP).
Acknowledgements
We are grateful to all professionals who contributed to the validation in India and Pakistan for their commitment to the project. We also want to thank all the professionals and parents for their invaluable contribution to the validation study in Zamość, Poland. We are also grateful to the team at the University of British Columbia, Canada for facilitating the educational sessions on practical applications of the ICF Core Sets for children and youth with CP by creating the open access educational website (
Methods & Materials
Aim: To describe the cultural validation of the ICF Core Sets for children and youth with CP in Pakistan, India, and Poland from the professionals’ and caregivers’ perspectives.
Pediatric validation guidelines were created to guide international groups.
References
Schiariti V., Selb M., Cieza A., O’Donnel M. International Classification of Functioning, Disability and Health Core Sets for children and youth with CP: consensus meeting. Developmental Medicine & Child Neurology. 2015;57(2):
Schiariti V., Selb M., Cieza A., O’Donnel M. International Classification of Functioning, Disability and Health Core Sets for children and youth with CP: Contributions to clinical practice. Developmental Medicine & Child Neurology. 2015;57(2):203–204.
ICF Educational e-tool. Available at: July 2016.
All leading centers organized ICF educational training sessions before starting the validation process.
Contacts: Dr Veronica Schiariti. University of British Columbia, Vancouver, Canada.
Figure 1 shows % of ICF categories meeting validation criteria by country
Pakistan, ICF educational session 2015