National Disability Study Pilot Report

Designing And Piloting An Irish Disability Research Instrument Based On WHO ICF

October 2003

Brian Nolan, Dorothy Watson, James Williams and Shirley Gorby - The Economic and Social Research Institute

Patricia Noonan Walsh and Anne O’Connor - Centre for Disability Studies, UCD

Jacqui Browne - Independent Consultant

Introduction

The National Disability Authority (NDA) has commissioned a team of researchers to develop and pilot an appropriate research instrument to establish the prevalence and impact of disability in Ireland, based on the International Classification of Functioning, Disability and Health (ICF), a new classification system developed by the World Health Organisation. This final report on the project first sets out in Section 2 why an accurate picture of disability prevalence and impact is needed for Ireland, and why a specially designed survey is required to provide it. It then outlines in Section 3 the NDA’s objectives in commissioning the study and describes the different elements of the study itself.

Those different elements are then described in detail in the remainder of the report. Section 4 looks in some depth at the ICF, both in conceptual terms and in application. Section 5 describes the consultation exercise carried out as part of the project. From Section 6 onward we then focus on the nuts and bolts of developing and piloting questionnaires which would fit within the general framework provided by the ICF and be appropriate for the Irish context. Carrying out a disability survey typically involves two stages: the first “screens” the population or large sample to identify a sub-set affected by disability, which the second stage then investigates in depth. Section 6 provides a brief background to disability measurement internationally. Section 7 focuses on the “screening” stage of the Irish pilot exercise, including both the design and carrying out of that element. Section 8 describes the design, carrying out and results of the main follow-up survey. Section 9 discusses feedback and reactions from both the respondents and interviewers to the survey. Section 10 discusses the issues which arise when one seeks to map the results from such a survey to the ICF. Finally, Section 11 highlights the main lessons and recommendations from the study. Appendices contain the survey instruments designed in the course of the project.