REPORT OF FIELD TRIALS ON ICIDH-2 BETA-1 DRAFT10 OCTOBER 1998
Japan ICIDH-2 Field Trials Planning Committee
Chair: Satoshi Ueda, M.D.
Secretary General: Hisao Sato, Ph.D.
CONTACT: Hisao sato,
Professor, Japan College of Social Work 3-1-30, Takeoka, Kiyose, Tokyo, JAPAN
TEL:+81-424-92-6111
FAX:+81-424-92-6816
E-mail:jcsw-hisao.sato@nifty.ne.jp
INTRODUCTION
Japan Field Trials Center carried out translation, linguistic analysis, items evaluation, basic questions and options test on the Beta-1 draft of ICIDH-2 from July 1997 to January 1998. The number of the participants was 30 and their names are listed in the appendix. We appreciate their voluntary participation and enthusiasm for the revision of ICIDH.
On the process of the field trials, we have sent information to more than two hundred people several times. More than 200 copies of translated draft were distributed. Japan field trial committee meetings were held six times and other meetings to discuss ICIDH were held many times.
The response rate for the options test was very low and we regret to have had to omit the results of this test from this report.
The committee is very grateful to have had an opportunity to join the international revision process of ICIDH. We especially thank WHO and international ICIDH colleagues for giving us a chance to host the Tokyo Revision Meeting on March 1998, which was the best opportunity for many people from Asian countries and many Japanese to start activities on ICIDH. We also thank Ministry of Health and Welfare, Yasuda Kasai Foundation and Japanese Society for Rehabilitation of Persons with Disabilities for their warm supports.
In addition to the field tests coordinated by Japan Center, 43 Japanese responded to the questionnaire of International Task Force for Children through the coordination of Dr. Simeonsson, Dr. Arima, Ms. Numata and Ms. Oho, and 30 Japanese responded to the items evaluation for the US - Japan comparative research coordinated by Dr. Kennedy, Dr. Iseta, Dr.Tazaki, Dr. Sato, Mr. Iwasaki and Ms. Oho.
I TRANSLATION AND LINGUISTIC ANALYSIS
A draft translation into Japanese was carried out by nine people. However, as enough time was not available to be in time for starting the Field Trials, only the items were translated but not the detailed explanation of the concept for section 1 of the impairment of function chapter and section 4, 5 and 6 of the activity chapter. All other parts of the Draft were translated.
More than 200 copies of the Japanese version have been distributed. And it is put on the home-page of Japanese Society for Rehabilitation of Persons with Disability (http://www.dinf.ne.jp) and Japanese League for Developmental Disability (http://plaza6.mbn.or.jp/~jlmr).
The following 9 items were found to have linguistic problems. But we did not make a back translation, as no fund was available.
1. community (p60200): problem with the item
Japanese translation: chiiki (Japanese) or komyunitii (A quasi-English word written by Japanese phonetic alphabet)
problem area = 3 (Translated word (Japanese) has a narrower meaning, ie., local community)
2. honorary societies: a word in the definition of "participation in community," p60200; problem with the definition
Japanese translation: meiyoteki kyokai
problem area = 2 (No local idiomatic equivalent. The best translation, "meiyoteki kyokai" is still difficult to understand)
3. second language: a word in the definition of "participation in other forms of education," p40180;
problem with the definition (example)
Japanese translation: kokugo igaino genngo (a language other than one's native language)
problem area = 2 (no local idiomatic equivalent)
4. stamping: in the examples of "showing appreciation," a70160;
problem with the examples;
problem area = 6 (cultural applicability problem. Stamping shows dissatisfaction in our culture)
5. human expressive sounds (a20240, a20600, a20650): problem with the item
Japanese translation: hi genngo on
problem area = 2 (There is no local idiomatic equivalent, but definition and examples are helpful to understand the concept)
6. working (a80431, a80432, a80440): problem with the item
Japanese translation: kodo surukoto
problem area = 4 (translated word (Japanese) has a wider meaning, ie., "to act," or "to behave." The essential concept of "working" in this context is "performing tasks," and we could use Japanese equivalent of "performing tasks" for translation of "working." But this leads to a tautology, defining the term with the term.)
7. pusher edges, plate buffers: in the examples of "using aids for housekeeping," a90500):
problem with the examples
Japanese translation: fudo gado (food guard)
problem area = 4 (translated word has a wider meaning)
8. Bliss Board Symbols: in the definition of "participation in exchange of information by symbols and signs," p20300)
problem with the definition (example)
problem area = 2 (No local idiomatic equivalent. At least some English-Japanese dictionaries do not contain it. Many Japanese do not understand even if translated correctly.)
9. Involvement: in the definition of "Participation"
problem with the definition
Japanese translation: kanyo
problem area = 5? ("Kanyo" has wide meanings including "participation," "relation" and "influence," but is very often used interchangeably with "sanka," a Japanese translation of "participation." This lead to an unclear translation of the definition. In order to have an appropriate translation we need to know clearer conceptual differentiation of "participation" and "involvement" in the context of ICIDH-2.
II BASIC QUESTIONS
Consensus Conference was held in Toyama Sunrise, Shinjuku, Tokyo, 10:00-17:30, 30 January 1998. Fifteen people who attended consisted of 7 professionals in physical disabilities (PD), 6 professionals in mental disabilities (MD), and 2 consumers with PD. Dr. Ueda and Dr. Sato jointly chaired the conference.
1. Coverage of the ICIDH
Consensus conference participants agreed that all of 1. Diseases, 2. Disorders, 3. injury and trauma, 4. other health conditions -- a) aging, b) pregnancy, c) genetic predisposition, d) stress and e) violence should be included. In 3, trauma should be understood to include not only physical but also psychological. Not only pregnancy but also delivery should be included in 4-b). For 4-d) and e) we should exclude external factors such as stressor, but include only a situation of a person being exposed to stress or violence.
Participants also agreed to include "past and future" diseases in the coverage of the ICIDH. Because past episode of mental illness of a person may lead to a discrimination, and a person infected with HIV may be discriminated due to the negative attitude of the society.
2. Term Consequence"
The term "consequence" should be retained. But we want to call attention to the fact that disease or other health conditions does not necessarily nor automatically determine the disablement.
Regarding the meaning of "consequence," opinions were divided between A. "a causal relationship" and C. "associated with." One participant defined it as "a two-way causal relationship."
3. Term "disablement"
This term should be retained. It is necessary to denote, in one word, the negative aspects experienced by the person with health condition.
4. ICIDH Applications
All of the listed areas.
5. ICIDH Model and interaction of concepts
Figure 1 was supported by most participants. Some supported the Canadian model (Handicap Creation Process Model) and some the Ueda's model (see attached figure) which emphasizes the subjective or existential aspect of the disablement phenomenon.
An arrow to "Health Condition" from "Impairment," "Activity" and "Participation" is needed. Also it should be noted in the explanatory text that the direct interaction between "Impairment" and "Participation" might exist.
Some participants pointed the strength of Figure 3 that it clearly illustrate the development process of the restriction of participation, and suggested to insert the "Personal Factors" in the center of the figure to make it better.
One participant said that these models are not mutually exclusive. He suggested that WHO should decide the Figure 1 as only one authorized "Mother Model" in the ICIDH-2 (main volume) and WHO should also introduce various (unauthorized) "Child Models" based on the "Mother Model" which are being proposed and tested around the world corresponding to various purposes and focusing on different aspects of disablement and functioning phenomenon in the ICIDH-2 volume 2 or 3.
6. Contextual factors regarding disablement
The list of environmental factors seems comprehensive enough for most of the participants. One participant suggested to add "privacy" to the list.
Personal factors should be included as a contextual factor, but the present proposal seems problematic. A new list of personal factors is expected.
Some participants proposed to include "race" and "religious belief" in it. One suggested that "temperament" should be included in the "Personal Factors" rather than "Impairment".
7. Level of Detail in Classification
1) Yes, 2) Yes, 3) Yes. The ways employed in the Beta Draft are adequate to serve to different users' needs about the level of detail.
8. Current Beta Draft numbering system:
The system of current Beta Draft was supported.
9. Boundaries between body function and activity
a) The group agreed with this formulation.
b) The group did not think that simple actions such as seeing, hearing, recognizing, grasping, reaching, pulling, etc. should only be classified as Impairments at the body level.
10. Boundaries between activity and participation
a) The group agreed with this formulation. However, from the viewpoint of direct intervention each of these items include too many sub categories and should be subdivided.
b) The majority of group members thought that complex activities should only be classified as participation issues but some member disagreed. The reason of the disagreement was that the present draft includes some items whose definition is not clear whether it belongs to activity or participation.
11. Overall Scheme and Definitions
No participant supported the use of "abnormality." Many supported the use of "significant variation or alteration." However, some members further suggested the definitions of impairment should be "variation or alteration which may give rise to handicap."
12. Title of the Classification
The group agreed with this change in the title.
However, some members of the Panel proposed alternative abbreviations, such as:
(1) ICIAPC: International Classification of Impairments, Activities, Participation and Context.
(2) ICDF: International Classification of Disablement and Functioning
(3) ICDF (ICIDH-2): International Classification of Impairments, Activities, Participation and Context--A Manual of Dimensions of Disablement and Functioning.
13 Others
Some participants said that, in the past, people said "ability first, participation next," but we have to pay attention to the fact that ability usually develops through participation.
Some participants pointed the needs to clarify the relation between the QOL scale and the ICIDH-2 in the WHO classification system.
One participant mentioned that, realistically the ICIDH-2 would be useful as "a model" rather than "a scale."
One participant requested to pay enough attention that ICIDH-2 might be used in the "care management" or "needs assessment" to cut services under the financial pressure. He added that the decision making of services eligibility should be based on "needs" or even "aspiration of the user" rather than "disablement."
III．ITEMS EVALUATION<Subjects>
There are 30 respondents to the Japan field trial center, their occupational categories are:
Categories Persons
1. Health professionals for persons with physical disabilities 12 2. Health professionals for persons with mental disabilities 7 3. Consumers with physical disabilities 4 4. Consumers with mental disabilities 4 5. Caregivers for persons with physical disabilities 0 6. Caregivers for persons with mental disabilities 3 Question 1
<Questions>
Does this item/concept need clarification?
Question 2
Can this concept be used without any difficulty in your culture, including in different subgroups as defined by age, gender, ethnicity or other social categories?Question 3
Is this item culturally sensitive (e.g. difficult to talk about, taboo, embarrassing, etc.)?Question 4
Is this item best placed in the classification as an impairment, an activity or disability, or a participation issue?Question 5
How important is it to keep this item in the ICIDH-2 classification?<Results and discussion>
Question 1, 2 and 3 on applicability
We have combined the results of Question 1 (clearness), Question 2 (applicability to our culture) and Question 3 (sensitivity in our culture) to find items which are not easy to use, i.e., applicability in one word. The Figure "Question 1+2+3" shows the combined results. The value of each item shows sum of negative response rate (%) to these three questions (max = 300%). Following lists also indicate the worst and best 10 items from the viewpoint of applicability.
Worst 10 items which are difficult to use
37. Fertility
1. Community
25. Courting or maintaining a romantic relationship
13. Citizenship
4. Using appropriate physical contact and maintaining social space
48. Executive functions
26. Sexual functions
49. Psychomotor activity
27. Performing consensual sexual act
29. Temperament
Best 10 items which are easy to use
22. Cooking using heat
46. Transportation
30. Hearing Functions
40. Remembering
45. Using aids for communication, information and signaling
2. Mobility
39. Recognizing
44. Interacting with persons in formal settings
43. Procurement and care of necessities
42. Caring for own well-being
In the discussion of our results, you need to understand that our Items Evaluation Test has been done using draft Japanese translation. Accordingly the results reflect the evaluation of translation as well as that of the meaning of beta-1 draft itself.
Item "37. fertility" is the worst Item, but there is some translation problem. The Chinese characters used for the first draft translation for the "Fertility" were old medical term that are seldom used in everyday language and consequently very difficult, although the concept itself was not too difficult.
This suggests two things that we should be careful about in this kind of field trial. One is that we should not use uncommon words not only for the translation but also for the questionnaire. The other is we are asking both the term and its concept at a same time, i.e. two questions and one answer. If there are no appropriate term, it might be better testing only its concept using an easily understandable word.
And we should also consider it is a sensitive concept itself. One of the respondents says that it is sensitive. As sterile females were considered not to be qualified for wives in old Japan, and lifestyle of a married couple without children is still not very common, it could be a stigma. It should be used with caution.
The second worst item is "1. community." This word is commonly used in Japan usually not in translated form but in sound-based transliterated quasi-English form, which tends to mean different things in different situations. A reason of this non-?translation is that there is no proper counterpart to this term in Japanese. When it is translated, its meaning becomes narrower, meaning only "area-related human group", or sometimes even "area" itself, both of which are quite different from the ICIDH-2 definition.
The third worst item is "4. physical contact". This result comes from the cultural background. Even if we were close friends, we seldom touch each other. Mother stop walking hand in hand with their children after five or six years of age. There is an answer that a physical contact should be more clarified because its use is limited to a sexual relationship in Japanese, and another one that it is difficult to use, as not to touch other person is a basic culture in Japan.
Question 4 on classification
As Figure "Question 4" shows, most of the items were placed in one of the three dimensions by the majority of respondents. But respondents' opinions were divided between impairment and activity concerning "26. Sexual functions", "33. Exercise tolerance", "39. Recognizing", "40. Remembering", "49. Psychomotor activity" and between activity and participation concerning "14. Maintaining close personal relationships", "19. School related behaviors", and "44. Interacting with persons in formal settings".
As the graph shows that "50. insight" and "48. executive function" are divided into three levels, it means people are bewildered classifying. One of the respondents comments "the definition of executive functions is ambiguous. Are they functions for executing tasks?" Very few specialists use this term in Japan.
It is interesting that "37. fertility" and "1. community" are not easy to use but they are easy to classify.
Question 5 on importance of items
The respondents were asked to grade the importance of each item using 4 point scale: 1, not important, to 4, very important. The value of each item in the Figure "Question 5" means the average of grades by 30 respondents.
The items which get high point are "2. mobility", "30. hearing functions", "47. transfering oneself", "46. transportation", "20. understanding messages," "17. using assistive devices" and so on. They are all helpful for the person with physical disability.
And "4. physical contact" and "29. temperament" are rated to be least important by Japanese respondents.
There is another tendency that the items, which are easy to use in Figure (Q1+Q2+Q3), are given high points of importance. But "22. cooking using heat" is an exception, which is easy to use but gets low point of importance.
<Main additional comments given by respondents>
Some comments suggesting better translation would be used in the translation of the Beta-2, but not shown below. Some respondents seem to have had little time to read the translation as a whole and gave comments due to misunderstanding. Such comments are neither shown below.
1. Community
1) It is not clear enough because it does not include "chonaikai", a unit of association of residents in a certain small-scale area, and the concept "seken", a society or people in general, which is an important concept in Japan.
2) It should be defined as area or functional groups excluding blood relative groups.
3) A community is an area-related group in a local autonomy or a neighborhood association in Japan.
2. Mobility
It needs clarification, as it describes the quality.
3. Acquiring and applying knowledge
1) The meaning of "various cognitive functions" is not clear. It should describe particular activities or show examples.
2) I would like to suggest an alternative description: "to add what was seen or heard to his/her knowledge, and to use it."
4. Using appropriate physical contact and maintaining social space
1) Japanese translation should include examples like "kissing on the cheek or put a hand on the shoulder."
2) A physical contact should be more clarified because its use is limited to a sexual relationship in Japanese term.
3) It is difficult to use, as not to touch is a basic culture in Japan.
5 Leisure
1) It needs clarification, as the meaning of leisure includes both quality and quantity.
2) The term is difficult to use when it is translated to a Japanese word.
7.Participation in economic transactions
1) The description is too long and difficult to understand.
2) Alternative items: "economic activities" or "management of cash and assets."
3) It is a sensitive word, as Japanese generally keep the own economic conditions secret.
8.Economic security
1) It is difficult to understand, as sentences are too long and not clear.
2) Is it equal to "not being legally incompetency"?
3) "Economic independence" seems better.
4) In our culture it is difficult to apply to housewives, the aged and children.
9.Understanding non-verbal messages (other than formal sign language)
The extent of "non-verbal messages" is not clear, whether or not it includes arts such as music, "general signs and symbols" defined in item 6, or "appropriate physical contact" defined in item 4.
10.Using communication devices / techniques
The extent of intermediate devices is very wide, so it is confusing. It is better to show examples of intermediate devices.
11. Civic and community life
It is too general and not easy to use.
12. Managing in a dangerous environment
1) Although this item is important, it is difficult to evaluate, as observation is not possible.
2) It is better to give examples of "a dangerous environment."
13. Citizenship
1) The terms used in the description are not understandable without background knowledge of legal science. The sentences are too long and difficult to read.
2) It should be "human rights and duties of citizen".
3) It is not easy to use in our culture, as the concept of citizenship is not familiar to Japanese.
14.Maintaining close personal relationships
As "close personal relationships" remind us of love relationships, "trustful personal relationships" would be better.
16. Planning/organizing meals
1) The extent of "planning/organizing meals" is not clear. It should include planning, cooking, serving meals and cleaning up.
2) How can we evaluate patients in hospital and males who can do but do not do it in daily life?
17. Using assistive devices and technical aids
The meaning of and difference between "(assistive) devices," "(technical) aids" are not clear.
18.Modulating a message through emotional expression
1) "Non-verbal skills such as gesture" might be better.
2) An alternative description: This item does not involve conveying the message by using language and formal sign language but involve varying the strength of the message by using humor and facial expressions and changing tones.
3) It is difficult to use. As Japanese do not have enough opportunities to learn skills for presentation, debate and assertion, most of them are poor at it.
19.School related behaviors
1) The extent of "study behaviors" is not clear.
2) The school building and school gymnasium should be included in addition to the classroom.
20. Understanding messages in speech and formal sign language
1) "The description of a single object" is difficult to understand.
2) How "one word" is dealt with?
21. Economic skills
1) The description is understandable except for the "infrastructures."
2) If this skills deal with personal money and budget, then "management of family finances" should be included.
23. Producing messages in speech or formal sign language
"Shaping and directing conversation" is hard to understand, and it needs examples.
25. Courting or maintaining a romantic relationship
1) It is difficult to use.
2) Romantic relationship is not clear. Is it limited to unmarried persons? Does it include the relationship between the same sex?
3) The old generation has the culture to refrain from expressing it frankly.
4) The extent of culturally expected activities should be discussed.
26. Sexual functions
1) An alternative description is suggested: this item refers to sexual interest, sexual performance, emotion associated with sexual intercourse and psychological impact from sexual relationships.
2) It is difficult to use, as we should consider for the problem of sexual harassment.
3) As to classification, the emotion associated with sexual intercourse is not only functional but complicated one. As it exists in the reciprocal relations, it is different from a function on an individual basis.
27. Performing consensual sexual acts
It is difficult to ask about this item, especially to unmarried females.
28. Tolerating sensory stimulation of the skin
What does "the skin's defense against stimuli" signif physiologically?
29.Temperament
1) As to classification, it is hard to decide in which it should be placed, body function or activity.
2) Temperament is a type of reaction to social stimulus.
31. Quality of vision
1) There is a contradiction that diplopia is a pathological phenomenon, whereas other words are physiological.
2) Only normal functions should be described in the same way with hearing functions, and abnormalities should be described in the item of impairment.
32. Experience of pain
The meaning of experience of pain is difficult to understand.
34. Methods of respiration
The meaning of "predominantly" is not clear.
35. Nutrition
1) "General" aspect is not clear.
2) It is the repetition of synonyms.
3) An alternative item: Digestion and absorption of nutrition.
36. Immunological functions
It is difficult to understand for those without technical knowledge.
37. Fertility
1) It is sensitive, as it is relating to sex and considered to be a taboo.
2) It is sensitive. As sterile females used to be considered not qualified to be wives in old Japan, and lifestyle of a married couple without children is still not common, it could be a stigma. It should be used with caution.
3) As it is actually very difficult to diagnose, it is not useful item. If it is necessary for some users, it should be coded in the category "others".
38. Muscular force
"This is usually measured by the level of performance of a particular action using a specific muscle or muscle group against varying grades of resistance" is difficult to understand. Examples are needed.
39. Recognizing
1) As to classification, perception by sense should be included in impairment, and recognizing should not be included in activities. If it is recognizing of relations with oneself about time and space, orientation is commonly used. Does it belong to activities?
2) To what extent does it recognize? If it means perception, recognizing should be placed in body function. The term recognition in psychiatry is obviously a part of function of brain.
40. Remembering
Though there is an assertion that it is an impairment of memory, forgetfulness caused by psychiatric conditions cannot be judged as impairment.
41.Problem-solving
It is an important skill, but we cannot expect high rate of concordance between raters.
43. Procurement and care of necessities
The meaning of "procurement and taking care of" is not clear, and it needs examples.
44. Interacting with persons in formal settings
The meaning of "social interactions" is not clear, and it needs examples.
47. Transferring oneself
The meaning of "walking related activities" is not clear and it needs examples.
48. Executive functions
1) An alternative name for this item would be "thinking function for execution."
2) Only experts may understand the description.
3) The definition of executive functions is ambiguous. Are they functions for executing tasks?
49. Psychomotor activity
1) It needs examples of particular behavior.
2) It is difficult to understand, as not being commonly used.
3) I suppose it refers to "being in good spirits or not", but the description is difficult to understand.
50. Insight
An alternative title of item: individual insight or individual cognition of impairment.
General comments:
1) Sentences are complicated in composition and difficult to understand.
2) Some items describe the quality and quantity, and some don't.
3) As to the items that consist of some elements such as planning/organizing meals, it is difficult to understand what they include or do not include.
4) The meaning of some words like "general" of general aspects of nourishment is difficult to understand.
5) There are some technical words like psychomotor activity, which are not commonly used.
PARTICIPANTS of ICIDH-2 beta1 FIELD TRIAL in JAPAN
*)Chair,
**)Secretary General
Akatsuka Mitsuko
Amano Naoji
Ando Norihiko
Arima Masataka
Furuno Shinichiro
Hagita Akio
Haruna Yuichiro
Ikebuchi Emi
Ikuta Munehiro
Iseda Takashi
Ito Mitsuhiro
Iwasaki Shinya
Kato Makiko
Kizuka Yasuhiro
Kudo Tadashi
Kurokawa Yukio
Mano Yukio
Maruyama Ichiro
Matsui Nobuo
Muto Naoko
Nakanishi Shouji
Nishimura Kaoru
Niwa Shinichi
Nonaka Takeshi
Ohashi Hideyuki
Oho Mari
Ohta Masataka
Okawa Yayoi
Sakano Junko
Sato Tokutaro
**Sato Hisao
Shirabe Ikko
Tabata Yukie
Takada Eiichi
Taniguchi Akihiro
Terashima Akira
*Ueda Satoshi
Watanabe Yuko
Yamada Takayoshi
Yoshikawa Hiromi
Yoshio Masaharu
