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Research on people with disabilities in Zambia: Recent experience and findings. presented by: Mitchell Loeb A “rogue” researcher from: SINTEF Health Research OSLO, Norway. Collaborating Partners. Norway: SINTEF Health Research

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research on people with disabilities in zambia recent experience and findings

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

presented by: Mitchell Loeb

A “rogue” researcher from:

SINTEF Health Research

OSLO, Norway

collaborating partners
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)
collaborating partners3
Collaborating Partners

Zambia:

  • Zambian Federation of the Disabled (ZAFOD)
  • University of Zambia, Institute on Economic and Social Research (INESOR)
  • Central Statistical Office (CSO)
objectives overall
Objectives: Overall
  • to contribute to the improvement in living conditions among people with activity limitations in Zambia
objectives
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
design methodology
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)
the disablement phenomenon 1980
The Disablement Phenomenon - 1980

Disease or Impairment(s) Disability(ies) Handicap(s)

disorderBody level Personal level Societal level

screening for disabilities
Screening for Disabilities

Screening based on impairments: the ”What’s wrong with you?” approach:

Questions used to identify persons with disabilities:Zambia Census 1990

Is (name of interviewee):

Blind? Yes/NoDeaf/dumb? Yes/NoCrippled? Yes/NoMentally retarded? Yes/No

global disability prevalence rates
Global disability prevalence rates*

* Sources and methodologies are country specific

screening for disabilities11
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%
screening for activity limitations i
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

screening for activity limitations ii
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?
screening for activity limitations iii
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%
number of households and individuals in the study
Number 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%

functioning matrix sample prevalence by domain and degree of difficulty n 28010 179 missing
Functioning Matrix: Sample prevalence (%) by domain and degree of difficulty (N=28010; 179 missing)

D1 = at least some difficulty

D2 = at least a lot of difficulty

D3 = unable to do it at all

questionnaires used in the survey
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
9 domains 44 activities
9 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
activity limitation a measure of capacity
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
activity limitations
Activity Limitations

Activity limitation score

participation restriction a measure of performance
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)
opportunities
Opportunities
  • Disability is no longer be defined according to one’s physical impairment (the “What’s 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)
opportunities26
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.
opportunities27
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.
challenges
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
slide29
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@sintef.no