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
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
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)
D1 at least some difficulty D2 at least a lot
of difficulty
D3 unable to do it at all
19Sample prevalence measures
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
- http//www.sintef.no/content/page1____1561.aspx
- SAFOD website www.safod.org
- (look for the link to surveys on living
conditions)
- alternatively, contact me mitch.loeb_at_sintef.no