Cultural practices and Environment and Participation assessment

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

2. ICF recap • Start with a health condition - I.e. a medical problem - permanent, temporary, present, perceived to be there, etc. • 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 • Disability and functioning are experiences that change as environment changes • disability experience changes with changes in environment - not static feature of the person

3. Participation • 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 • need to understand individual aspects that make up this broad notion of participation • measure what the person does or what happens when person is in their current or usual environment = Performance

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

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

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

8. Cultural practices related to P • 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 (!) • 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 • If domain for participation is not relevant (no performance), should we ask about capacity to do it anyway • Research: Anthropological and asking what is relevant

10. Environment and culture • 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 • Research: • do the E domains describe all different cultural environments? • What additional categories are required?

11. Cultural notion: who is disabled? • 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…’ • Count using a standard threshold or different ones in different countries? • 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 • 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 • Cultural practice would be a barrier in this case and describe using ICF categories

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