Title: Research on people with disabilities in Zambia: Recent experience and findings
1Research on people with disabilities in Zambia
Recent experience and findings
- presented by Mitchell Loeb
- A rogue researcher from
- SINTEF Health Research
- OSLO, Norway
2Collaborating 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)
3Collaborating Partners
- Zambia
- Zambian Federation of the Disabled (ZAFOD)
- University of Zambia, Institute on Economic and
Social Research (INESOR) - Central Statistical Office (CSO)
4Objectives Overall
- to contribute to the improvement in living
conditions among people with activity limitations
in Zambia
5Objectives
- 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
6Design 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)
7The Disablement Phenomenon - 1980
- Disease or Impairment(s) Disability(ies)
Handicap(s) - disorder Body level Personal level
Societal level
8Screening 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
9Disability prevalence
10Global 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
11Screening 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
12The ICF Model - 2001
13Screening 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
14Screening 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?
15Screening 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
16Prevalence Activity limitations a theoretical
model
17Number 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
18Functioning 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
19Sample 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
20Questionnaires 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
219 Domains 44 Activities
- Sensory experiences watching, listening
- Basic learning applying knowledge reading,
writing - Communication producing and receiving messages
- Mobility walking, moving around
- Self-care washing, dressing
- Domestic life shopping, preparing meals
- Interpersonal relations making friends,
interacting with strangers - Major life areas going to school, getting a job
- Community, social and civic life clubs,
religious, politics
22Activity 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
23Activity Limitations
Activity limitation score
24Participation 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)
25Opportunities
- 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)
26Opportunities
- 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.
27Opportunities
- 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.
28Challenges
- 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