Marijke W. de Kleijn – de Vrankrijker WHO-FIC Collaborating Centre The Netherlands

1. Washington Group on Disability Statistics: extended set 2 on participation and environmental factors Marijke W. de Kleijn – de Vrankrijker WHO-FIC Collaborating Centre The Netherlands Margie Schneider Human Sciences Research Council South Africa WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

2. Introduction • ICF as the framework for conceptualisation • Bringing any component measurement back into the framework to make sense (e.g. use of core sets and extended set 1) • Understanding relationships between the different components of ICF • Extended set is for purpose of equalisation of opportunities and monitoring of population functioning and disability but with aim of capturing a more extended population than by using core Qs • Not sure about providing information for service needs beyond very general indication WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

3. Extended set 2 WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

4. Extended set 2 content • Content of extended set 2 should include • Other activities (not included in set 1), • Participation and • Environmental factors • Analysis of existing questionnaires for national health and disability surveys to be analyzed concerning participation and environmental factors • Analysis of 5 countries’ disability or general survey questionnaires : Australia, France, Netherlands, South-Africa, USA • Drawing out trends in domains covered and omitted and ways of asking questions WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

5. Participation Participation defined as domains of chapter 6 – 9 of ICF classification of activity/participation 6. Household tasks, 7. Interpersonal interactions 8. Major life areas Education Work and employment Economic life 9. Community, Social and Civic life Community life Recreation and leisure Religion and spirituality Human rights and political life WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

6. Possible approaches • Questions indicating the participation of a person such as income level, marital status, etc. • Questions concerning participation restrictions because of impairments and activity limitations (e.g. not being employed because of disability) WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

7. Results : participation • Household tasks D630-640: • Most questions used refer to preparing meals, doing housework, caring for household objects and assisting others • Interpersonal interactions D710-770: • Most questions ask about family and friends; significant omissions are on basic interpersonal skills (e.g. developing and maintaining relationships) and intimate relationships • Some examples: are you consulted about making household decisions, do you go to family events, etc. WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

8. Participation (contd) • Education D810-830: attending school and highest degree of education • Work and employment D840-870: paid job and unemployed + reason why, job level • Economic life D860-870: level of income WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

9. Results per domain (2) • Community life D910: no recommended question found • Recreation and leisure D920: practising sports • Religion and spirituality D930: no recommended question found • Human rights and political life D940-950: participation in elections WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

10. General conclusion: participation • Decide on way to ask the questions • Only found a few examples of questions and mostly within domains of employment and education • Need to review additional domains to be included • Possible cooperation with the Dutch group : ‘Impact’ which includes all chapters of ICF domains of activity and participation WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

11. Regarding environment Major trends in questions and domains covered • Mostly on products and technology (chpt 1), support (chpt 3) and services (chpt 5) • Some indications of the built environment (chpt 1) • Almost nothing on natural environment (chpt 2) – some Qs on lighting, sound and vibration • very little on attitudes (chpt 4) • Nothing on systems and policies (chpt 5) WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

12. General trends (Contd) • generally noting of factor but not whether it is a barrier or facilitator • If do ask about impact of the EF then generally ask about barriers • Mostly immediate environment relating to individual • Limited range of Efs covered but those covered are done in a detailed manner • Limited direct link between participation restriction and EF • What happens in your usual environment • What makes it easier or more difficult for you to do that activity WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

13. General Trends (contd) • Wording of survey questions do not facilitate coding of Efs • e.g. what problems if any have you experienced with services in the past? • No more money - lack of assets (EF) • too far/no transport - lack of transport services (EF) • not helping anymore - ? (not EF) • reached level of functioning set as goal - ? (not EF) • services no longer available - lack of services (EF) • not satisfied with services - EF or not? • don’t know about any services - EF or not? WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

14. General trends (contd) • wording and orientation of questions does make the link between the level of participation and use of EFs • does anyone use a hearing aid? Not followed up with whether facilitates or not participation in communication • do you attend school? No indications of barriers or facilitators to attending; sometimes include something like inclusion in school or receiving specialised services • are you a member of any clubs, societies….? No indications of barriers or facilitators to being a member WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

15. Issues in measuring EFs • Immediate or broader environment – what is appropriate in self report, respondent focused data collection? • Triangulating with other information (e.g. service availability) • Noting whether EF is a facilitator or barriers • Importance of measuring facilitators as well • Can break or be lost • Need to understand the effect WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

16. Conclusion : Environment • focus on immediate E (most realistic?) – broader environment can be obtained from other sources, e.g. availability of services, accessibility of built environment, general attitudes, policies • limited coverage of EF domains but great detail in those covered (e.g. assistive technology and services) • Many examples of environmental factors being included WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

17. Conclusion : environment (contd) So, recommend….. • look at other domains to include in surveys (e.g. Natural environment, attitudes) • Indicate effect of EF as barrier or facilitator • change wording of questions in surveys to fit ICF domains or clarify existing questions • What is the main reason for you not reaching the level of education you planned to reach? • Vs • what made it easier or difficult to reach the level of education……. • Do we get the same range of responses? WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

18. Dank voor uw aandachtBaie dankiethank you Marijke.de.kleijn@rivm.nl www.rivm.nl/who-fic Mschneider@hsrc.ac.za www.hsrc.ac.za WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider