1. Cultural practices and Environment and Participation assessment Classification, Assessment, Surveys and Terminology (CAS/EIP) World Health Organization Geneva Marguerite Schneider Marguerite Schneider Washington City Group on Measurement of Disability Washington D C, 18 - 20 February 2002 Classification, Assessment, Surveys and Terminology (CAS/EIP) World Health Organization Geneva Marguerite Schneider Marguerite Schneider Washington City Group on Measurement of Disability Washington D C, 18 - 20 February 2002

2. ICF recap n Start with a health condition - I.e. a medical problem - permanent, temporary, present, perceived to be there, etc. n Interaction of that medical problem with contextual factors gives an outcome. –If outcome is a problem for the person = an experience of disability –other outcomes = functioning n Disability and functioning are experiences that change as environment changes n disability experience changes with changes in environment - not static feature of the person n Start with a health condition - I.e. a medical problem - permanent, temporary, present, perceived to be there, etc. n Interaction of that medical problem with contextual factors gives an outcome. –If outcome is a problem for the person = an experience of disability –other outcomes = functioning n Disability and functioning are experiences that change as environment changes n disability experience changes with changes in environment - not static feature of the person

3. Participation n Participation is a broad concept that could encompass, amongst others, the following aspects: –what the person does in their current environment (observed or self-reported) - includes their physical, social and other types of environment. –what the person judges as being their participation –the person’s satisfaction with their participation –since ICF is descriptive and not evaluative system it would only be used for first option n need to understand individual aspects that make up this broad notion of participation n measure what the person does or what happens when person is in their current or usual environment = Performance n Participation is a broad concept that could encompass, amongst others, the following aspects: –what the person does in their current environment (observed or self-reported) - includes their physical, social and other types of environment. –what the person judges as being their participation –the person’s satisfaction with their participation –since ICF is descriptive and not evaluative system it would only be used for first option n need to understand individual aspects that make up this broad notion of participation n measure what the person does or what happens when person is in their current or usual environment = Performance

4. A/P domains: Chapter level n Learning and applying knowledge n general tasks and demands n communication n mobility n self-care n domestic life n interpersonal interactions and relationships n major life areas n community, social and civic life n Learning and applying knowledge n general tasks and demands n communication n mobility n self-care n domestic life n interpersonal interactions and relationships n major life areas n community, social and civic life

5. E domains: Chapter level 1. Products and technology 2. Natural environment and human-made changes to the environment 3. Support and relationships 4. Attitudes (of others) 5. Services, systems and policies 1. Products and technology 2. Natural environment and human-made changes to the environment 3. Support and relationships 4. Attitudes (of others) 5. Services, systems and policies

6. What are the issues around culture? n Culturally relevant and appropriate assessment tools n cultural norms that determine whether participation in a specific domain is relevant n setting threshold too low or too high and comparator issues (person without health condition) - includes socio-economic context n cultural practices that cause impairments, activity limitations and/or participation restrictions n RESEARCH –participation restrictions because of culture rather than health –understanding of questions –asking of sensitive questions n Culturally relevant and appropriate assessment tools n cultural norms that determine whether participation in a specific domain is relevant n setting threshold too low or too high and comparator issues (person without health condition) - includes socio-economic context n cultural practices that cause impairments, activity limitations and/or participation restrictions n RESEARCH –participation restrictions because of culture rather than health –understanding of questions –asking of sensitive questions

7. Generic categories in ICF n ICF domains are cross-culturally appropriate - work of cross cultural research related to ICF and WHO DAS II n assessment tools need to be culturally specific n examples –dressing: saris, loin cloth, kaftan, head gear, jeans, etc. –interpersonal relationships: use of eye contact in some cultures but not in others n what do we compare - generic categories? n ICF domains are cross-culturally appropriate - work of cross cultural research related to ICF and WHO DAS II n assessment tools need to be culturally specific n examples –dressing: saris, loin cloth, kaftan, head gear, jeans, etc. –interpersonal relationships: use of eye contact in some cultures but not in others n what do we compare - generic categories?

8. Cultural practices related to P n Some cultural practices may make that certain domains are not relevant, e.g. –work for women under Taliban regime (but the women might want this described anyway) –involved in decision making where certain groups are not involved in this –teenagers and housework (!) n If certain P domains are not appropriate, then issues are: –do we compare only on overlap categories? –do we compare at chapter level even if some data in chapter is missing? n Some cultural practices may make that certain domains are not relevant, e.g. –work for women under Taliban regime (but the women might want this described anyway) –involved in decision making where certain groups are not involved in this –teenagers and housework (!) n If certain P domains are not appropriate, then issues are: –do we compare only on overlap categories? –do we compare at chapter level even if some data in chapter is missing?

9. If P not relevant n If domain for participation is not relevant (no performance), should we ask about capacity to do it anyway n Research: Anthropological and asking what is relevant n If domain for participation is not relevant (no performance), should we ask about capacity to do it anyway n Research: Anthropological and asking what is relevant

10. Environment and culture n Generic domains vs specific assessment examples issue for environment as for Participation –support of family - one culture would see it as much more than another –attitudes will differ across different cultures n Research: –do the E domains describe all different cultural environments? –What additional categories are required? n Generic domains vs specific assessment examples issue for environment as for Participation –support of family - one culture would see it as much more than another –attitudes will differ across different cultures n Research: –do the E domains describe all different cultural environments? –What additional categories are required?

11. Cultural notion: who is disabled? n Different cultures would have different threshold of what counts as disabled or not: e.g. –Children without birth certificates and with mild intellectual impairment - no real sense of age hence = no real sense of delay = not seen as impaired –different understanding and view on ‘disability’ - what happens when use more neutral language such as ‘difficulty with/in…’ n Count using a standard threshold or different ones in different countries? n Comparator in ICF: person without health condition; how deal with generally low participation because of socio-economic conditions? –Lack of schools in poor areas - no one goes to school, including children with impairments - is it Partic. Restriction or not? n Different cultures would have different threshold of what counts as disabled or not: e.g. –Children without birth certificates and with mild intellectual impairment - no real sense of age hence = no real sense of delay = not seen as impaired –different understanding and view on ‘disability’ - what happens when use more neutral language such as ‘difficulty with/in…’ n Count using a standard threshold or different ones in different countries? n Comparator in ICF: person without health condition; how deal with generally low participation because of socio-economic conditions? –Lack of schools in poor areas - no one goes to school, including children with impairments - is it Partic. Restriction or not?

12. Cultural practice causing disability n A cultural practice can itself cause an impairment, activity limitation or participation restriction –female genital mutilation causes impairments of reproductive system –ostracisation of people with vitiligo in India because asssociated (wrongly) with leprosy - medical problem and participation restriction but no impairment or activity limitation n Cultural practice would be a barrier in this case and describe using ICF categories n A cultural practice can itself cause an impairment, activity limitation or participation restriction –female genital mutilation causes impairments of reproductive system –ostracisation of people with vitiligo in India because asssociated (wrongly) with leprosy - medical problem and participation restriction but no impairment or activity limitation n Cultural practice would be a barrier in this case and describe using ICF categories

13. Conclusion n Comparability of generic categories n development of specific assessment tools that are culturally relevant n researching the role of culture in determining activities that people engage in n Comparability of generic categories n development of specific assessment tools that are culturally relevant n researching the role of culture in determining activities that people engage in