Summary Mission Reports Part 2Analysis of surveys
United Nations Expert Group Meeting on the Guidelines and Principles of the Development of Disability Statistics, New York, US, 12-14 July 2017
Huib Ten Napel
Marijke de Kleijn-de Vrankrijker
UNSD - consultants
Dutch WHO-FIC Collaborating Centre
ICF
Contents:
1. Short reminder why the ICF?
2. Reference Framework and Structure for analysis + examples
2
- The International Classification of Functioning, Disability and Health – ICF (WHO, 2001)
- offers a different approach to ‘Disability‘ in terms of ‘Functioning‘
- provides a comprehensive, universal and globally accepted model and taxonomyto describe functioning.
3
1 – Why the ICF?
Health condition
Environmental
factors
Personal
factors
Body functions/ Body structures
Activities Participation
1. The ICF integrative Bio-Psycho-SocialModel of functioning and disability
•ICF has moved away from being a consequence of disease classification to
become a components of health classification.
4
Disability = Consequences of disease
Health condition
Medical model
Health condition
Environmental factors Personal factors
Body functions/ Body structures
Activities Participation
Integrative Bio-Psycho-Social model
Proposed framework how WHO-FIC cansupport collection of comparable data
For reasons of International comparability of questionnaires and data we decided on two things,
To work in a Reference Framework
ICF components as presented in Session 2 and sheet 4
To use a Structure for analysis
Disability definition
Introductory phrase/question
Screening question
Disability questions/items
Response categories
Other relevant items
2. Reference Framework and structure for analysis
6
Before every regional meeting:
Collected several documents from several sources:
- the UNSD database, local database, if present
- the questionnaires received during the six meeting from the participating countries
- and the content of the presentations, if presented differently
- all around the 2010 census round
Analysis of the documents according the presented structure:
- by mapping to relevant ICF categories (or ICD-10)
- depending on the context of the used terminology
- observations concerning the use of terms
The material
Example of analysis
Paraguya Census 2012 Disability definition
-
Introductory phrase/question
-
Screening question-
Disability questions/itemsSee table
Response categoriesCannot do at all
Yes, with great difficulty
Yes, with some difficulty
No, no difficulty
Don’t know, refusal
Other relevant itemsFrom 2 years and above
8
Paraguay Census 2012Disability questions/items
9
Disability questions/items ICD ICF-Function ICF-Structure ICF-Activity ICF-Participation
ICF-Environmental Factors
Has -NAME- permanent difficulty with:
-
seeing (even when using glasses or lenses)
b210*e1251*
hearing(even when using a hearing aid)
b230*e1251*
walking,climbing stairsusing arms and hands for performing tasks
d450* + d4551*d430-d449
understanding or learningmental retardationDown Syndromeautism
Ch VQ90F84
b117?d1
mental or emotionalmental illnesstransgender
Ch VCh V
b1b152
Regional comparing
Comparing countries with the ICF
Examples from 6 regional meetings
10
South East Asian Region – 16 Countries Disability questions/items / Functions/Structures
11
1
1
1
2
1
3
4
16
16
6
6
8
0 2 4 6 8 10 12 14 16 18
structure of lower extremity
structure of upper extremity
structure of shoulder region
movement functions
n. and movement related functions
voice functions
voice and speech functions
hearing functions
seeing functions
remembering
concentrating
mental functions
FREQUENCY (16)
Frequency (16)
South East Asian Region – 16 Countries Disability questions/items/Activity/Participation
12
2
2
2
4
5
7
1
4
3
5
6
0 1 2 3 4 5 6 7 8
regulating behaviours within interactions
dressing
washing
self care
climbing (stairs)
walking
lifting and carrying objects
mobility
speaking
communication
learning
Frequency (16 )
Caribbean Region – 22 Countries Disability questions/items / Functions/Structures
13
1
5
5
1
3
3
22
22
2
7
16
14
11
0 5 10 15 20 25
structures of trunk
structures of lower extremities
structures of upper extremities
structures of head and neck
movement related functions
voice functions
hearing functions
seeing functions
thought functions
emotional functions
remembering
concentrating
mental functions
Frequency (out of 22)
Caribbean Region – 22 Countries Disability questions/items/Activity/Participation/Environmental Factors
14
19
1
2
2
6
4
1
1
1
1
8
8
17
5
3
17
20
6
2
2
3
2
2
10
21
6
19
17
0 5 10 15 20 25
assistive products for communication
assistive product/mobility
recreation and leisure
community, social and civic life
employment
education
shopping
domestic life
looking after ones health
eating
dressing
washing
selfcare
moving around
reaching
climbing stairs
walking
gripping
carrying
lifting
standing
kneeling
squating
mobility
speaking
‘understanding’
communication
learning and applying knowledge
Frequency (out of 22)
African – 32 Countries Disability questions/items/Functions/Structures
15
9
9
3
1
2
4
1
11
8
29
29
2
8
9
1
2
16
STRUCTURE OF LOWER EXTREMITY
STRUCTURE OF UPPER EXTREMITY
A NA TOMICA L STRUCTURES
FUNCTIONS OF SK IN A ND RELA TED …
MOV EMENT FUNCTIONS
NEUROMUSCULOSKELETA L A ND …
FUNCTIONS OF D IGESTIV E, ETC, SYSTEM
V OICE FUNCTIONS
V OICE A ND SPEECH FUNCTIONS
HEA RING FUNCTIONS
SEEING FUNCTIONS
EMOTIONA L FUNCTIONS
REMEMBERING
CONCENTRA TING
SPECIF IC MENTA L FUNCTIONS
INTELLECTUA L FUNCTIONS
MENTA L FUNCTIONS
Frequency (out of 32)
African - 32 CountriesDisability questions/items/Activity/Participation/Environmental Factors
16
6
1
1
1
2
1
1
2
2
3
6
9
14
1
1
1
6
2
15
2
2
1
5
0 2 4 6 8 10 12 14 16
assistive products for communication
assistive products for mobility/transportation
economic life
work and employment
education
regulating behaviour/interactions
looking after one's health
eating
dressing
washing
self care
climbing (stairs)
walking
grasping/holding
standing
sitting
mobility
being understood by others
speaking
understanding others
communication
handling stress/psychological demands
learning
Frequency (out of 32)
Arabic - 17 (19-2) Countries Disability questions/items/Functions/Structures
17
2
2
1
2
2
6
4
17
17
7
7
2
4
STRUCTURE OF LOWER EXTREMITY
STRUCTURE OF UPPER EXTREMITY
STRUCTURE OF EYEBA LL
MOV EMENT FUNCTIONS
NEUROMUSCULOSKELETA L A ND MOV EMENT RELA TED SYSTEM
V OICE FUNCTIONS
V OICE A ND SPEECH FUNCTIONS
HEA RING FUNCTIONS
SEEING FUNCTIONS
REMEMBERING
CONCENTRA TING
SPECIF IC MENTA L FUNCTIONS
MENTA L FUNCTIONS
Frequency (out of 19-2 (17))
Arabic - 17 (19-2) CountriesDisability questions/items/Activity/Participation/Environmental Factors
18 6
12
2
2
1
1
5
5
9
7
8
2
1
3
3
5
6
9
1
A SS IST IV E PROD UCTS FOR COMMUNICA TION
A SS IST IV E PROD UCTS FOR MOBIL ITY/TRA NSPORTA TION
FULL-T IME EMPLOYMENT
PA RT-T IME EMPLOYMENT
INTERA CTING WITH SOCIA L RULES
REGULA TING BEHA V IOUR/INTERA CTIONS
D RESS ING
WA SHING
SELF CA RE
CLIMBING (STA IRS)
WA LKING
WA LKING A ND MOV ING
LIFT ING A ND CA RRYING OBJECTS
MOBIL ITY
BEING UND ERSTOOD BY OTHERS
SPEA KING
UND ERSTA ND ING OTHERS
COMMUNICA TION
LEA RNING
Frequency (out of 19 -2 (17))
Latin Americas - 15 (19-4) Countries Disability questions/items/Functions/Structures
19
3
3
1
3
15
15
1
3
3
1
8
STRUCTURE OF LOWER EXTREMITY
STRUCTURE OF UPPER EXTREMITY
RESPIRATORY FUNCTIONS
VOICE FUNCTIONS
HEARING FUNCTIONS
SEEING FUNCTIONS
EMOTIONAL FUNCTIONS
REMEMBERING
CONCENTRATING
INTELLECTUAL FUNCTIONS
MENTAL FUNCTIONS
Frequency (15 out of 19-4)
Latin Americas 15 (19-4) CountriesDisability questions/items/Activity/Participation/Environmental Factors
20
2
21
1
1
1
1
3
4
4
2
9
4
14
1
1
1
9
1
1
11
5
4
6
SUPPORT AND RELATIONSSHIPS
ASSISTIVE PRODUCTS FOR COMMUNICATION
PLAYING
WORK AND EMPLOYMENT
SCHOOL EDUCATION
INTERPERSONAL INTERACTIONS AND …
EATING
DRESSING
WASHING
SELF CARE
CLIMBING (STAIRS)
MOVING AROUND
WALKING
WALKING AND MOVING
MANIPULATING
GRASPING/HOLDING
CARRYING AND MOVING OBJECTS
MOBILITY
BEING UNDERSTOOD BY OTHERS
SPEAKING
UNDERSTANDING OTHERS
COMMUNICATION
LEARNING
Frequency (15 out of 19-4)
International comparing
Comparing regions with the ICF
Grouped results from 6 regional meetings
Frequency > 20
21
All - 114 (131-17) Countries Disability questions/items/Functions/Activities/Participation/Environmental Factors
22
70
25
26
33
55
73
26
61
24
47
36
26
109
109
48
47
48
0 20 40 60 80 100 120
assistive products for communication
dressing
washing
self care
climbing (stairs)
walking
mobility
speaking
understanding others
communication
learning (and applying knowledge)
voice functions
hearing functions
seeing functions
remembering
concentrating
mental functions
Frequency items >20
Observations
Comparing items on disability mapped to the ICF:
Frequency > 20
- 17 items are used most frequent
- Items in questionnaires are named in many different ways
- WG-SS split-items are recognisable
- WG-SS questions are recognisable, but almost never as intended in SS
- Some items not in the top 17 seem relevant to certain regions
- different terminology: long term disability, major disability or impairment, longstanding illness or disability or infirmity that limits you, permanent disability, longstanding disability, disability status, impeddiments, etc
- different terms for the same referent: vision, seeing, eye-sight, blindness, sees, visual impaired, etc.
23
Observations
Items are not covering the ICF principle of the BPS approach: maybe not realistic
The Medical model is very dominant in the questionnaires, even though some countries aim at the BPS approach: functioning as the core of what disability is about
Possible solution is to strive for:
- a basic set of items (not questions combining items) for international comparing, using the same terms/items, incl. items for children
- a basic set of items + local extensions for National use
- an extended set for international comparing for countries with specific goals: such as for commitment to the SDG’S
24
One last observation
25
شكرا
RAKHMET
