Health Research 1 Research on people with disabilities in Zambia: Recent experience and findings presented by: Mitchell Loeb A “rogue” researcher from: SINTEF Health Research OSLO, Norway

Health Research 2 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)

Health Research 3 Collaborating Partners Zambia: Zambian Federation of the Disabled (ZAFOD) University of Zambia, Institute on Economic and Social Research (INESOR) Central Statistical Office (CSO)

Health Research 4 Objectives: Overall to contribute to the improvement in living conditions among people with activity limitations in Zambia

Health Research 5 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

Health Research 6 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)

Health Research 7 The Disablement Phenomenon Disease orImpairment(s) Disability(ies) Handicap(s) disorder Body level Personal level Societal level

Health Research 8 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/No Deaf/dumb? Yes/No Crippled? Yes/No Mentally retarded? Yes/No

Health Research 9 Disability prevalence

Health Research 10 Global disability prevalence rates* High-income countriesLow-income countries Year% % Canada Kenya Germany Namibia Italy Nigeria Netherlands Senegal Norway South Africa Sweden Zambia Spain Kenya UK Zimbabwe USA Malawi * Sources and methodologies are country specific

Health Research 11 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%

Health Research 12 The ICF Model

Health Research 13 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

Health Research 14 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?

Health Research 15 Screening for Activity Limitations: III Questions used to identify persons with disabilities: Living Conditions Survey Zambia 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%

Health Research 16 Prevalence: Activity limitations – a theoretical model

Health Research 17 Number of households and individuals in the study Source: Number of: HouseholdsIndividuals Persons with disabilities Households having a person with disability * Households without a person with disability (Controls) ** Total * 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%

Health Research 18 Functioning Matrix: Sample prevalence (%) by domain and degree of difficulty (N=28010; 179 missing) Core DomainD1D2D3 Vision Hearing Mobility Remembering Self-Care Communicating D1 = at least some difficulty D2 = at least a lot of difficulty D3 = unable to do it at all

Health Research 19 Sample prevalence measures N% P1: at least 1 Domain has D P1a: at least 2 Domains have D P2: at least 1 Domain has D P3: at least 1 Domain has D PM: more than 1 Domain has D

Health Research 20 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

Health Research 21 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

Health Research 22 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

Health Research 23 Activity Limitations Activity limitation score

Health Research 24 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)

Health Research 25 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)

Health Research 26 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.

Health Research 27 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.

Health Research 28 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

Health Research 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: SAFOD website: (look for the link to surveys on living conditions) alternatively, contact me: