# Presentation: 154707

## 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

## 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

## Extended set 2  

| ICF component | Short set | Extended set 1 | Extended set 2 | Short set 2? |  |
| --- | --- | --- | --- | --- | --- |
| Body function | + | + | - | - |  |
| Body structure | +? | +? | - | - |  |
| Activity | +/- | +/-
 | +/- | +/- |  |
| Partici-pation | - | - | + | + |  |
| Environmental factors | - | - | + | + |  |

- WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## 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

## Dank voor uw aandachtBaie dankiethank you

- _[Marijke.de.kleijn@rivm.nl](mailto:Marijke.de.kleijn@rivm.nl)_
- www.rivm.nl/who-fic
- _[Mschneider@hsrc.ac.za](mailto:Mschneider@hsrc.ac.za)_
- www.hsrc.ac.za

- WG 5 Rio September 2005 second extended set Marijke de Kleijn & Margie Schneider