Developmental Neurosciences
& Child Health
Development of ICF Core Sets
for Children and Youth with Cerebral Palsy:
The Global Expert Survey Project
A World Health Organization Collaboration Project
The overarching objective of this Global Expert Survey is to explore the professional experts’ perspectives on relevant functional areas of children and youth with
cerebral palsy (CP). The specific aims are to identify strengths and challenges in functioning important to children and youth with CP and to quantify these strengths/challenges using ICF-CY.
To learn more about the ICF core sets and how they are developed, please visit the ICF research project page.
How will experts be found for the Global Expert Survey?
A critical step in this project is that of finding the population to be surveyed. There are three key attributes of the study population for this study that must be fulfilled:
- Since the ICF was developed to create a common language for communication between different groups of professions for global use, and to be used globally, the study population must include experts from all six WHO regions: Eastern Mediterranean, South-East Asia, Western Pacific, The Americas, Africa and Europe.
- The respondents to the survey must represent those who hold expertise in providing care or service, from a biopsychosocial perspective, to children and youth with CP. Therefore, this survey must reach physicians (developmental pediatricians, pediatricians, pediatric rehabilitation physician, pediatric neurologists, pediatric neurosurgeons, and orthopedic surgeons), occupational therapists, rehabilitation nurses, physiotherapists, speech and language pathologists, social workers and special education teachers.
- The individuals surveyed must be “experts”. While including a wide range of participants, validity will be increased by selecting survey participants with significant expertise and experience in the field.
While all those who interact with children and youth with CP will hold valuable knowledge, for the purposes of this survey, and in keeping with the WHO process, we are seeking professionals who are “experts”. We invite participants who hold self-identified expertise and experience, using specific criteria. For this particular study, we will consider experts those individuals who fulfill the following criteria:
- professional includes one of the following: pediatricians, developmental pediatricians, pediatric rehabilitation physicians, pediatric neurologists, pediatric neurosurgeons, pediatric orthopedic surgeons, occupational therapists, rehabilitation nurses, physiotherapists, speech and language pathologists, social workers and special education teachers and,
- For at least 5 years, they have been working in the field of child/adolescent CP (including clinical, educational, research and/or administrative roles) and,
- their focus is mainly in pediatric physical disabilities and,
- they are fluent in English.
Once a bank of experts who have expressed an interest in participating and who have good global representation has been created, a random sample of those individuals will receive the web-link to access to the survey.
What happens after the information is collected?
After receiving all the completed questionnaires from all participants, the survey results will be translated ("linked") into the ICF language.
The data analysis will include absolute and relative frequencies of ICF categories named by the health professionals in each WHO region.
This completed survey will be reported upon and used at the consensus process which will happen later in the program of research. This will be a critical element of the preparation needed for that stage.
Each participant who is interested will get back the anonymous results at the end of the study.
What is the time frame for this project?
A time frame of 6-8 months has been proposed for this Global Expert Survey project. In July 2009 we will begin the recruitment of potential participants. The data collection process from experts who have agreed to take part will start by December 2009.
Families are “experts” when it comes to their children. How will families be involved?
Input from families is critical to the creation of the core sets. It is so important that there is a separate and distinct project (i.e., the cross-sectional study) which will elicit the perspectives of families.
Who is responsible for this expert survey project and how can I learn more?
The specific research project and the full program of research related to the development of the ICF core sets for children and youth with CP is being conducted by Dr. Veronica Schiariti, Dr. Maureen O’Donnell, Dr. Robert Armstrong from the University of British Columbia and Dr Alarcos Cieza from the Ludwig-Maximilian University in Germany.
This Survey project has been approved by the research ethics board of the University of British Columbia.
The development of ICF core sets for children and youth with CP is an inclusive and open process. If you have questions about the survey, please contact Veronica Schiariti. If you are willing to participate in the survey, download the ICF Expert Survey invitation letter.
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Children and Youth with Disabilities in Society (CYDiS)
Last updated:
10/09/2009
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