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VIEWS: 18 PAGES: 18

									  National Institute
  for Public Health and
  the Environment




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   1
                              Marijke de Kleijn & Margie Schneider
   National Institute
   for Public Health and
   the Environment




                                   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   2
                               Marijke de Kleijn & Margie Schneider
    National Institute
    for Public Health and
    the Environment




                                    Extended set 2
ICF       Short                         Extended Extended                      Short
component set                           set 1    set 2                         set 2?
Body                        +           +                -                     -
function
Body                        +?          +?               -                     -
structure
Activity                    +/-         +/-              +/-                   +/-

Partici-                    -           -                +                     +
pation
Environmen                  -           -                +                     +
tal factors

                                 WG 5 Rio September 2005 second extended set            3
                                     Marijke de Kleijn & Margie Schneider
   National Institute
   for Public Health and
   the Environment




                           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   4
                                Marijke de Kleijn & Margie Schneider
   National Institute
   for Public Health and
   the Environment




                                 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   5
                               Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   6
                               Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   7
                                Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   8
                              Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   9
                                Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




             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   10
                              Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   11
                               Marijke de Kleijn & Margie Schneider
   National Institute
   for Public Health and
   the Environment




                           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   12
                                Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                           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     13
                                   Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   14
                               Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          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   15
                                Marijke de Kleijn & Margie Schneider
   National Institute
   for Public Health and
   the Environment




                           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   16
                                 Marijke de Kleijn & Margie Schneider
   National Institute
   for Public Health and
   the Environment




            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   17
                               Marijke de Kleijn & Margie Schneider
  National Institute
  for Public Health and
  the Environment




                          Dank voor uw aandacht
                               Baie dankie
                                thank 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   18
                                 Marijke de Kleijn & Margie Schneider

								
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