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Research on people with disabilities in Zambia:

Recent experience and findings

presented by: Mitchell LoebA “rogue” researcher from: SINTEF Health Research

OSLO, Norway

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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)

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Collaborating Partners

Zambia:

Zambian Federation of the Disabled (ZAFOD)

University of Zambia, Institute on Economic and Social Research (INESOR)

Central Statistical Office (CSO)

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Objectives: Overall

to contribute to the improvement in living conditions among people with activity limitations in Zambia

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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

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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)

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The Disablement Phenomenon - 1980

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

disorder Body level Personal level Societal level

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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

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Disability prevalence

0

20

40

60

80

100

non-disabled disabled

Degree of disability

Per c

ent o

f pop

ulat

ion

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Global disability prevalence rates*

High-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

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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%

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The ICF Model - 2001

Health Condition

(disorder/disease)

Body functions Activity Participation

and structure

Environmental Personal

factors factors

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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

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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?

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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%

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Prevalence: Activity limitations – a theoretical model

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Number of households and individuals in the study

Source:

Number of:

Households IndividualsPersons withdisabilities

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%

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Functioning Matrix: Sample prevalence (%) by domain and degree of difficulty (N=28010; 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 difficultyD2 = at least a lot of difficultyD3 = unable to do it at all

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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

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Questionnaires used in the surveyPart 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

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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

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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

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Activity Limitations

0

20

40

60

80

100

120

140

160

180

1 5 9 13 17 21 25 29 33 37 41 45 49 53 57 61 65 69 73 77 82 86 90 94 98 102 108 112 119 126 143 161

Num

ber d

isab

led

0

2

4

6

8

10

12

14

16

18

20

Num

ber N

on-d

isab

led

Disabled

Non-disabled

Activity limitation score

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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)

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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)

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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.

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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.

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Challenges

In Organisations:Getting the message across: dissemination,

education, communication, awareness building

In ResearchChange 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

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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