Research on people with disabilities in Zambia: Recent experience and findings - PowerPoint PPT Presentation

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Research on people with disabilities in Zambia: Recent experience and findings

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Title: Research on people with disabilities in Zambia: Recent experience and findings


1
Research on people with disabilities in Zambia
Recent experience and findings
  • presented by Mitchell Loeb
  • A rogue researcher from
  • SINTEF Health Research
  • OSLO, Norway

2
Collaborating Partners
  • Norway
  • SINTEF Health Research
  • Norwegian Federation of Organisations of Disabled
    People (FFO)
  • Atlas Alliance on behalf of the Norwegian Agency
    for Development Co-operation (NORAD)

3
Collaborating Partners
  • Zambia
  • Zambian Federation of the Disabled (ZAFOD)
  • University of Zambia, Institute on Economic and
    Social Research (INESOR)
  • Central Statistical Office (CSO)

4
Objectives Overall
  • to contribute to the improvement in living
    conditions among people with activity limitations
    in Zambia

5
Objectives
  • to develop a strategy and methodology for the
    collection of comprehensive, reliable and
    culturally-adapted statistical data on living
    conditions among people with disabilities
  • (with particular reference to the International
    Classification of Functioning, Disability and
    Health - ICF)
  • to initiate a discussion on the concepts and
    understanding of disability
  • to include and involve people with disabilities
    in every step of the research process

6
Design Methodology
  • Choice of instruments
  • Living conditions (Namibia),
  • Disability survey (South Africa),
  • Activity limitations Participation restrictions
  • (ICF- World Health Organisation)
  • Disability screening (Washington Group)
  • Adaptation to Zambian context through
    multi-disciplinary workshops including key
    stakeholders (issues of both design and
    methodology)

7
The Disablement Phenomenon - 1980
  • Disease or Impairment(s) Disability(ies)
    Handicap(s)
  • disorder Body level Personal level
    Societal level

8
Screening for Disabilities
  • Screening based on impairments the Whats wrong
    with you? approach
  • Questions used to identify persons with
    disabilitiesZambia Census 1990
  • Is (name of interviewee)
  • Blind? Yes/NoDeaf/dumb? Yes/NoCrippled?
    Yes/NoMentally retarded? Yes/No

9
Disability prevalence
10
Global disability prevalence rates
High-income countries High-income countries High-income countries Low-income countries Low-income countries Low-income countries
Year Year
Canada 1991 14.7 Kenya 1989 0.7
Germany 1992 8.4 Namibia 1991 3.1
Italy 1994 5.0 Nigeria 1991 0.5
Netherlands 1986 11.6 Senegal 1988 1.1
Norway 1995 17.8 South Africa 1980 0.5
Sweden 1988 12.1 Zambia 1990 0.9
Spain 1986 15.0 Kenya 1989 0.7
UK 1991 12.2 Zimbabwe 1997 1.9
USA 1994 15.0 Malawi 1983 2.9
Sources and methodologies are country specific
11
Screening for Disabilities
  • Questions used to identify persons with
    disabilities
  • Zambia Census 2000
  • disability refers to a person who is limited
    in the kind or amount of activities that he or
    she can do because of on-going difficulties due
    to long term physical, mental or health
    problems.
  • includes partially sighted and hearing impaired
  • prevalence 2.7

12
The ICF Model - 2001
13
Screening for Activity Limitations I
  • The What do you need to become a fully active
    and integrated member of your society? approach
  • The use of global screening questions based on
    difficulties in doing certain daily activities
    activity limitations

14
Screening for Activity Limitations II
  • Because of a health problem (physical, mental or
    emotional problem)
  • Do you have difficulty seeing, even if wearing
    glasses?
  • Do you have difficulty hearing, even if using a
    hearing aid?
  • Do you have difficulty walking or climbing steps?
  • Do you have difficulty remembering or
    concentrating?
  • Do you have difficulty with self-care such as
    washing all over or dressing?
  • Do you have difficulty communicating for example
    understanding or being understood by others?

15
Screening for Activity Limitations III
  • Questions used to identify persons with
    disabilities
  • Living Conditions Survey Zambia 2006 - WG6
  • Response categories No, Some, A lot, Unable to
    do it
  • At least two of six Domains have at least some
    difficulty
  • prevalence 13.4

16
Prevalence Activity limitations a theoretical
model
17
Number of households and individuals in the study
Source Number of Number of Number of
Source Households Individuals Persons with disabilities
Households having a person with disability 2885 15210 2898
Households without a person with disability (Controls) 2866 12979 192
Total 5751 28189 3090
of 2898 persons screened with disabilities, 65
were found upon detailed interview to be
non-disabled false positives 2.2 represents
false negatives 6.2
18
Functioning Matrix Sample prevalence () by
domain and degree of difficulty (N28010 179
missing)
Core Domain D1 D2 D3
Vision 4.7 2.6 0.5
Hearing 3.7 2.3 0.5
Mobility 5.1 3.8 0.8
Remembering 2.0 1.5 0.3
Self-Care 2.0 1.3 0.4
Communicating 2.1 1.4 0.5
D1 at least some difficulty D2 at least a lot
of difficulty D3 unable to do it at all
19
Sample prevalence measures
N
P1 at least 1 Domain has D1 4053 14.5
P1a at least 2 Domains have D1 3090 11.0
P2 at least 1 Domain has D2 2368 8.5
P3 at least 1 Domain has D3 673 2.4
PM more than 1 Domain has D1 1718 6.1
20
Questionnaires used in the survey
  • Part 1a Household survey (individuals)
  • composition of household
  • education
  • economic activity
  • reproductive health
  • Part 1b Household survey (households)
  • income, expenses, ownership of land and assets
  • housing and physical environment
  • transport and communication
  • Part 2 Detailed disability survey
  • activities and participation matrix

21
9 Domains 44 Activities
  1. Sensory experiences watching, listening
  2. Basic learning applying knowledge reading,
    writing
  3. Communication producing and receiving messages
  4. Mobility walking, moving around
  5. Self-care washing, dressing
  6. Domestic life shopping, preparing meals
  7. Interpersonal relations making friends,
    interacting with strangers
  8. Major life areas going to school, getting a job
  9. Community, social and civic life clubs,
    religious, politics

22
Activity Limitation (a measure of capacity)
  • How DIFFICULT it is for you to perform this
    activity WITHOUT ASSISTANCE?
  • 0 - no difficulty
  • 1 - slight difficulty
  • 2 - moderate difficulty
  • 3 - severe difficulty
  • 4 - unable to carry out the activity

23
Activity Limitations
Activity limitation score
24
Participation Restriction (a measure of
performance)
  • Do you have any PROBLEMS performing this activity
    in your CURRENT ENVIRONMENT?
  • 0 - no problem
  • 1 - mild problem
  • 2 - moderate problem
  • 3 - severe problem
  • 4 - complete problem (unable to perform)

25
Opportunities
  • Disability is no longer be defined according to
    ones physical impairment (the Whats wrong with
    you? approach)
  • Equality, Accessibility, Inclusion and Human
    Rights become key elements to the definition of
    disability (the What do you need to become a
    fully active participant in your society?
    approach)

26
Opportunities
  • Disability is thought of as a process rather than
    as a state or condition.
  • Approach to dealing with disability shifts from
    fixing or repairing a deficit (physical
    impairment) to the removal of barriers (including
    attitudinal), thus creating better access and
    improving social participation.
  • Domain of disability also shifts away from the
    medical realm to the socio-environmental.

27
Opportunities
  • Inclusion of people with disabilities becomes
    paramount to the approach.
  • Thus, people with disabilities are no longer
    thought of as patients, beneficiaries, or
    research subjects - but become empowered peers,
    research participants and decision makers.

28
Challenges
  • In Organisations
  • Getting the message across dissemination,
    education, communication, awareness building
  • In Research
  • Change our way of thinking of disability
  • - from a dichotomy disabled versus not disabled
  • - to a continuum degree of activity limitation
    or degree of participation restriction
  • In Society
  • Normalising or demystifying disability

29
  • Reports on Living Conditions among People with
    Disabilities in Namibia, Zimbabwe, Malawi
    Zambia are available for download in pdf-format
    on the
  • SINTEF website www.sintef.no
  • SAFOD website www.safod.org
  • (look for the link to surveys on living
    conditions)
  • alternatively, contact me mitch.loeb_at_sintef.no
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