# Presentation: 872702

## 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**
**Norwegian Federation of Organisations of Disabled People (FFO)**
**Atlas Alliance: on behalf of the Norwegian Agency for Development Co-operation (NORAD)**

## 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

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

## 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: 

**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

**Disease or****	****Impairment(s)     Disability(ies)     Handicap(s)**
**disorder**** ****	****    ****Body level ****	****      Personal level ****	****       Societal level**

**Notes:**
The medical model of disability: disability seen as a uni-dimensional, cause 
and effect process where the existence of some disease or disorder results in an
impairment that is manifested physically at the body level. This impairment inflicts
an individual with a personal disability that handicaps him/her with respect to the rest
of society. 

## 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

## Disability prevalence 

## 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

## 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%

## The ICF Model - 2001

**Notes:**
The ICF model reflect a more social approach to disability.
A more complex, multidimensional, interactive model that reflects an 
individual’s interactions with their social and physical environment.
While the model has the same starting point as the earlier approach, and includes an 
individual’s physical impairment – it approaches the disability phenomenon through
An assessment of an individual’s activity limitations and participation restrictions.

## 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

**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

- 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%**

## Prevalence: Activity limitations – a theoretical model

## Number of households and individuals in the study

| Source: | Number of: |  |  |
| --- | --- | --- | --- |
|  | 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%

## 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 difficulty**
**D2 = at least a lot of difficulty**
**D3 = unable to do it at all**

## 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 |

## 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

- 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)

**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 limitation score

## 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

***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)****	**

## 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.**

## 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

***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****	**

## 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@sintef.no

**SINTEF website:**** **_[www.sintef.no](http://www.sintef.no/)_** **
- _[http://www.sintef.no/content/page1____1561.aspx](http://www.sintef.no/content/page1____1561.aspx)_
**SAFOD website:**** **_[www.safod.org](http://www.safod.org/)_** **
**	****(look for the link to surveys on living conditions)**
**alternatively, contact me: **_[mitch.loeb@sintef.no](mailto:mitch.loeb@sintef.no)_