Measuring participation according to the ... - Semantic Scholar

DISABILITY AND REHABILITATION,

2003;

VOL.

25,

NO.

11–12, 577–587

Measuring participation according to the International Classification of Functioning, Disability and Health (ICF) ROM J. M. PERENBOOM* and ASTRID M. J. CHORUS Division of Public Health, TNO Prevention and Health, Leiden, The Netherlands

Abstract Purpose: To report which existing survey instruments assess participation according to the International Classification of Functioning, Disability and Health (ICF). Method: A literature search for relevant survey instruments was conducted. Subsequently, survey instruments were evaluated of which the complete questionnaire, published in the English language, was obtained. Items on participation were evaluated according to the ICF, defined as involvement in life situations, including being autonomous to some extent or being able to control your own life. Results and Conclusions: Eleven survey instruments were identified, of which nine were evaluated on participation. All of the nine instruments measure participation to some extent. The two instruments closest to solely involve items on participation level are the Perceived Handicap Questionnaire (PHQ) and the London Handicap Scale (LHS). The PHQ is measuring the perception of participation. In the LHS, the items are formulated in terms of participation, while the response categories include all components of the ICF, from problems in body function to participation. Much more discussion is needed to be able to get an unambiguous picture to distinguish between activity and participation.

Introduction With the publication in 2001 of the revised version of the ICIDH, now entitled International Classification of Functioning, Disability and Health (ICF),1 the classification has moved away from being a ‘consequence of disease’ classification (1980 version) to become a ‘components of health’ classification. The concept ‘components of health’ identifies the constituents of health, whereas the concept of ‘consequences’ focuses on the impacts of diseases or other health conditions that may follow as a result. ICF provides a description * Author for correspondence; e-mail: [email protected]

of situations with regard to human functioning and its restrictions and serves as a framework to organise this information. ICF organizes information in two parts. The first part deals with Functioning and Disability, the second part covers contextual factors. Components of Functioning and Disability are divided in a Body component and an ‘Activity’ and ‘Participation’ component. Activity is defined as the execution of a task or action by an individual and Participation is defined by involvement in a life situation. For the description of activity and participation, two qualifiers are available: capacity and performance. The capacity qualifier describes an individual’s ability to execute a task or an action in a uniform or standard environment, while the performance qualifier describes what an individual does in his or her current environment. Components of Contextual factors are divided into ‘environmental factors’ and ‘personal factors’. Environmental factors have an impact on all components of functioning and disability. Personal factors are not classified in the ICF. Reduction of disabilities and improvement of participation for the disabled and chronically ill are important aims of rehabilitation and of health policy. In the Netherlands, this is especially the case in terms of work participation. Monitoring the degree of participation and restrictions are then of vital importance for those responsible for this policy field. Monitoring requires instruments that reflect the domains of participation as defined in the ICF. However, as the ICF has only recently been published, no instruments are available, designed and based on this ICF concept. Idealistically, existing instruments are based on the terminology and concepts of the former ICIDH, in this case the handicap concept. In 1999 Cardol et al. have published an article on how existing questionnaires assess handicap according to the ICIDH.2 They conclude that the existing

Disability and Rehabilitation ISSN 0963–8288 print/ISSN 1464–5165 online # 2003 Taylor & Francis Ltd http://www.tandf.co.uk/journals DOI: 10.1080/0963828031000137081

R. J. M. Perenboom and A. M. J. Chorus handicap questionnaires are not suitable to assess person-perceived handicaps in all domains. In this paper, we want to report our view on how existing survey instruments assess participation and participation restrictions, as defined in the ICF. In this article, the performance qualifier is not used as the only tool to evaluate the instruments. For us, participation is the involvement in life situations, which includes being autonomous to some extent or being able to control your own life, even if one is not actually doing things themselves. This means that not only the actual performance should be the key indicator, but also the fulfilment of personal goals and societal roles.3 Additionally, the ICF states that the concept of involvement should be distinguished from the subjective experience of involvement (the sense of ‘belonging’). However, we think that the best judge of participation is the respondent himself. It should be noted that in general population surveys often questions on participation are included. For instance, the Netherlands Continuous Life Situation Survey includes questions on work participation, social participation and participation in the community. But from these general surveys one cannot conclude whether difficulties in participation are related to health problems or a health condition or whether other factors cause these problems (financial situation, lack of time or interest and so forth). These more general questions on participation are not included in our evaluation. Methods To collect survey instruments on participation we carried out a Medline search, where we used the key words: handicap, participation, handicapped, instruments, measurement. Although the role of environmental determinants as barriers or facilitators in participation is unquestionable, in the ICF these are considered separately because they have an impact on

Table 1

all components of functioning and disability. Therefore, in our literature search we did not focus on environmental factors separately. Our evaluation of instruments was restricted to generic instruments. Disease specific instruments are not included. In total we found 11 generic instruments, that were labelled to measure one or more domains of participation. In table 1 the instruments and their main characteristics are presented. For the purpose of our study, we made a further restriction that the instruments should be available in English. If the instruments were not included in the articles, we contacted the authors to send us the original questionnaire. Each item of the collected instruments is evaluated for its formulation, according to our interpretation of dimensions: is the item formulated in terms of activities or formulated in terms of actual or perceived participation i.e. involvement, autonomy, societal role. Results Of the 11 instruments retrieved through our literature search we succeeded in collecting the original items of nine questionnaires. We were not able to get hold of the original items of the remaining two instruments, the Activity Enumeration Index4 and the Lubben Social Network Scale.5 So, these two instruments were left out from our evaluation. In table 2, we present original items of the nine instruments. Besides, we tried to link the items of the different instruments to ICF codes on chapter or lower levels. In this part we will report on the formulation of items of each instrument separately. The CHART (Craig Handicap Scale and Reporting Technique) includes five dimensions (see table 2). The instrument was normed on the general population and was validated among patients with various chronic diseases or injuries.6

Survey instruments to measure (domains of) participation

Instrument

Abbreviation

References

1. Craig Handicap Scale and Reporting Technique 2. Perceived Handicap Questionnaire 3. London Handicap Scale 4. Re-integration to Normal Living Index 5. Impact on Participation and Autonomy 6. Nottingham Health Profile 7. Activity Enumeration Index 8. Lubben Social Network Scale 9. WHO Disability assessment schedule 2 10. World Health Organization Quality of Life 11. SF36

CHART PHQ LHS RNL-index IPA NHP AEI Lubben scale WHODAS II WHOQOL SF36

Whiteneck et al., 1992 Tate et al., 1994 Harwood et al., 1994 Wood-Dauphinee et al., 1988 Cardol et al., 1999; Cardol et al., 200111 Hunt et al., 1980 Yelin et al., 1987 Lubben et al., 1988 www.who.int/icidh/whodas/generalinfo.html WHO, 1998 Aaronson et al., 1998

578

Measuring participation according to ICF Table 2 Items of different survey instruments related to ICF-codes

1 CHART

Dimensions

Items

ICF

Physical Independence

1. How many hours in a typical 24-hour day do you have someone with you to provide assistance? (hours paid/hours unpaid) 2. Not including any regular care as reported above, how many hours in a typical month do you occasionally have assistance with such things as grocery shopping, laundry, housekeeping, or infrequent medical needs like catheter changes? 3. Who takes responsibility for instructing and directing your attendants and/or caregivers? 1. On a typical day how many hours are you out of bed? 2. In a typical week, how many days do you get out of your house and go somewhere? 3. In the last year, how many nights have you spent away from your home (excluding hospitalisations?) (none,1 – 2, 3 – 4, 5 or more) 4. Can you enter and exit your home without any assistance from someone? (yes/no) 5. In your home, do you have independent access to your sleeping area, kitchen, bathroom, telephone, and TV (or radio)? (yes/no)

Environmental factors: chapter 3 ‘Support and relationships’ Environmental factors: chapter 3 ‘Support and relationships’

Mobility

Occupation

Social integration

Economic Selfsufficiency

6. Can you use your transportation independently? (yes/no) 7. Does your transportation allow you to get to all the places you would like to go? (yes/no) 8. Does your transportation let you get out whenever you want? (yes/no) 9. Can you use your transportation with little or no advance notice? (yes/no) 1. How many hours per week do you spend working in a job for which you get paid? 2. How many hours per week do you spend in school working toward a degree or in a accredited technical training program? (hours in class and studying) 3. How many hours per week do you spend in active homemaking including parenting, housekeeping, and food preparation? 4. How many hours do you spend in home maintenance activities such as yard work, house repairs, or home improvement? 5. How many hours per week do you spend in ongoing volunteer work for an organisation? 6. How many hours per week do you spend in recreational activities such as sports, exercise, playing cards, or going to movies? Please do not include time spent watching TV or listening to the radio 7. How many hours do you spend in other self-improvement activities such as hobbies or leisure reading? Please do not include time spent watching TV or listening to the radio 1. Do you live alone, or with a spouse or significant other, children (how many), other relatives (how many), roommate (how many), attendant (how many) 2. If you don’t live with a spouse or significant other are you involved in a romantic relationship? (yes/no) 3. How many relatives (not in your household) do you visit, phone, or write to at least once a month? 4. How many business or organisational associates do you visit, phone, or write to at least once a month? 5. How many friends (nonrelatives contacted outside business or organisational settings) do you visit, phone or write to at least once a month? 6. With how many strangers have you initiated a conversation in the last month? (for example, to ask information or place an order)? (none, 1 – 2, 3 – 5, 6 or more) 1. Approximately what was the combined annual income of all family members in your household? (consider all sources including wages and earnings, disability benefits, pensions and retirement income, income from court settlements, investments and trust funds, child support and alimony, contributions from relatives, and any other source)

Environmental factors: chapter 3 ‘Support and relationships’ Activities: d410 Participation: d460 Participation: d4601-d4602 Activities: d4602 Activities/Participation: d4600,: Environmental factors: chapter 1 ‘Products and technology’ Activities/Participation: d470 Participation: d475 Participation: d475 Participation: d475 Participation: d850 Participation: d820/d825/d830 Participation: d620/d630/d660 Participation: d650 Participation: d855 Participation: d920

Participation: d920 Participation: d750 Participation: d770 Participation: d760 Participation: d740 Participation: d7500 Participation: d7504 Participation: d870

(continued overleaf )

579

R. J. M. Perenboom and A. M. J. Chorus Table 2

(continued ) Dimensions

2 PHQ


Mobility

Occupation

Social integration

Economic selfsufficiency

3 LHS

Mobility


Items

ICF

2. Approximately how much did you pay last year for medical care expenses? (Consider any amounts paid by yourself or the family members in your household and not reimbursed by insurance or benefits) 1. In comparison to other able-bodied persons without a handicap, do you think you have more/less/equal physical independence, as defined by your ability to take care of yourself, do house chores and direct/guide others? 2. In comparison to other persons with disease/disorder, do you think you have more/less/equal physical independence, as defined by your ability to take care of yourself, do house chores and direct/ guide others? 1. In comparison to other persons without a handicap, do you think you have more/less/equal ability to move about effectively in the environment (i.e. home, community, travel to other geographical locations)? 2. In comparison to other persons with disease/disorder, do you think you have more/less/equal ability to move about effectively in the environment (i.e. home, community, travel to other geographical locations)? 1. In comparison to other persons without a handicap, do you think you have more/less/equal ability to engage in productive activities such as work (i.e. part-time, full-time, volunteer, education or training, leisure/recreation, home management)? 2. In comparison to other persons with the disease/disorder, do you think you have more/less/equal ability to engage in productive activities such as work (i.e. part-time, full-time, volunteer), education or training, leisure/recreation, home management)? 1. In comparison to other persons without a handicap, do you think you have more/less/equal ability to participate in and maintain social relationships and activities (i.e. have romantic relationship, have social contacts with family and friends, meet people in general)? 2. In comparison to other persons with the disease/disorder, do you think you have more/less/equal ability to participate in and maintain social relationships and activities (i.e. have romantic relationship, have social contacts with family and friends, meet people in general)? 1. In comparison to other persons without a handicap, do you think you have more/less/equal ability to sustain customary socioeconomic activity and independence (i.e. earn money, have income and medical benefits available to you)? 2. In comparison to other persons with the disease/disorder, do you think you have more/less/equal ability to sustain customary socio-economic activity and independence (i.e. earn money, have income and medical benefits available to you)? Think about how you get from one place to another, using any help, aids, or means of transport that you normally have available DOES YOUR HEALTH STOP YOU FROM GETTING AROUND? Not at all (you go everywhere you want to, no matter how far away) Very slightly (you go most places you want, but not all) Quite a lot (you get out of the house, but not far away from it) Very much (you don’t go outside, but you move around form room to room indoors) Almost completely (you are confined to a single room, but you can move around in it) Completely (you are confined to a bed or a chair, but you can move around in it) Think about things like housework, shopping, looking after money, cooking, laundry, getting dressed, washing, shaving, and using toilet

Participation: d8700

Participation: chapter 5 and 6


Participation: chapter 4






Participation: d860 – 879

Participation: d860-d879

Participation: chapter 4 (A&P)

Participation: chapters 5 and 6 (A&P) (continued overleaf )

580

Measuring participation according to ICF Table 2 (continued ) Dimensions

Occupation

Social integration

Orientation

Economic Selfsufficiency

Items DOES YOUR HEALTH STOP YOU FROM LOOKING AFTER YOURSELF? Not at all (you do everything to look after yourself) Very slightly (you need a little help now and again) Quite a lot (you need help with some tasks (such as heavy housework or shopping), but no more than once a day Very much (you do some things for yourself, but you need help more than once a day. You can be left alone safely for a few hours) Almost completely (you need help to be available all the time. You cannot be left alone safely) Completely (you need help with everything. You need constant attention, day and night) Think about things like work (paid or not), housework, gardening, sports, hobbies, going out with friends, travelling, reading, looking after children, watching television, and going on holiday DOES YOUR HEALTH LIMIT YOUR WORK OR LEISURE ACTIVITIES? Not at all (you do everything you want to) Very slightly (you do almost all the things you want to) Quite a lot (you find something to do all the time, but you cannot do some things for as long as you would like) Very much (you are unable to do a lot of things, but you can find something to do most of the time) Almost completely (you are unable to do most things, but you can find something to do some time) Completely (you sit all day doing nothing. You cannot keep yourself busy or take part in any activities) Think about family, friends, and the people you might meet during a normal day DOES YOUR HEALTH STOP YOU GETTING ON WITH PEOPLE? Not at all (you get on well with people, see everyone you want to see, and meet new people) Very slightly (you get on well with people, but your social life is slightly limited) Quite a lot (you are fine with people you know well, but you feel uncomfortable with strangers) Very much (you are fine with people you know well but you have few friends and little contact with neighbours. Dealing with strangers is very hard) Almost completely (apart from people who look after you, you see no-one. You have no friends and no visitors) Completely (you don’t get on with anyone, not even people who look after you) Think about taking in and understanding the world about you, and finding your way around in it DOES YOUR HEALTH STOP YOU UNDERSTANDING THE WORLD AROUND YOU? Not at all (you fully understand the world around you. You see, hear, speak, and think clearly, and your memory is good) Very slightly (you have problems with hearing, speaking, seeing or your memory, but these do not stop you doing these things) Quite a lot (you have problems with hearing, speaking, seeing or your memory which make life difficult a lot of the time. But, you understand what is going on) Very much (you have (he/she has) great difficulty understanding what is going on) Almost completely (he/she is unable to tell where he/she is or what day it is. He/she cannot look after him/herself at all) Completely (he/she is unconscious, completely unaware of anything going on around him/her) Think about whether health problems have led to any extra expenses, or have caused you to earn less than you would if you were healthy

ICF

Participation: d840-d859, d920, d640, d6505



Participation: d870


581



4 RNL-index

Indoor Community Distant mobility Self care Daily activity

Recreational and social activities

General coping skills Relationships

5 IPA

Social relations

Autonomy in self-care

Items ARE YOU ABLE TO AFFORD THE THINGS YOU NEED? Yes, easily (you can afford everything you need. You have easily enough money to buy modern labour saving devices, and anything you may need because of ill health) Fairly easily (you have just about enough money. It is fairly easy to cope with expenses caused by ill health) Just about (you are less well off than other people like you; however, without sacrifices you can get by without help) Not really (you only have enough money to meet your basic needs You are dependent on state benefits for any extra expenses you have because of ill health) No (you are dependent on state benefits, or money from other people or charities. You cannot afford things you need) Absolutely not (you have no money at all and no state benefits. You are totally dependent on charity for your most basic needs) I move around my living quarters as I feel is necessary (Wheelchairs, other equipment or resources may be used) I move around my community, as I feel necessary. (Wheelchairs, other equipment or resources may be used) I am able to take trips out of town, as I feel necessary (Wheelchairs, other equipment or resources may be used) I am comfortable with how my self-care needs (dressing, feeding, toileting, bathing) are met. (Adaptive equipment, supervision, and/ or assistance may be used) I spend most of my days occupied in a work activity that is necessary or important to me. (Work activity could be paid employment, housework, volunteer work, school etc. Adaptive equipment, supervision, and/or assistance may be used) I am able to participate in recreational activities (hobbies, crafts, sports, reading, television, games, computers, etc.) as I want to. (Adaptive equipment, supervision, and/or assistance may be used) I participate in social activities with family, friends, and/or business acquaintances as is necessary or desirable to me (Adaptive equipment, supervision, and/or assistance may be used) I feel that I can deal with life events as they happen I assume a role in my family, which meets my needs and those of other family members. (Family means people with whom you live and/or relatives with whom you don’t live but see on a regular basis. Adaptive equipment, supervision, and/or assistance may be used) In general, I am comfortable with my personal relationships In general, I am comfortable with myself when I am in the company of others 1 The possibility to have a conversation on equal terms with relatives and friends is (excellent, very good, moderate, poor, very poor) 2 The quality of my relationship with partner and family is (excellent, very good, moderate, poor, very poor) 3 The respect I receive from partner and family is (excellent, very good, moderate, poor, very poor) 4 The contact with acquaintances is (excellent, very good, moderate, poor, very poor) 5 The respect I receive from acquaintances is (excellent, very good, moderate, poor, very poor) 6 The frequency of contacts is (excellent, very good, moderate, poor, very poor) 7 The possibility to have a sexual relationship is (excellent, very good, moderate, poor, very poor) 1 The possibility to wash and dress myself, or have myself washed and dressed, the way I want is (excellent, very good, moderate, poor, very poor) 2 The possibility to wash and dress myself, or have myself washed and dressed, when I want is (excellent, very good, moderate, poor, very poor)

ICF

Participation d4600 Participation d460 Participation d4602 Participation chapter 5 Participation d810-d859

Participation d920 Participation d9205 n.q. Participation d760

Participation d730-d799 n.q. Participation d750-d760 Participation d760 n.q. Participation d7503 n.q. Participation chapter 7 Participation d7702 Participation d510, d540 Participation d510, d540


582


Family role

Mobility and leisure

6 NHP part II

7 WHO-DAS-II 36-items

Life areas

Understanding and communication

Getting around

Self care

Getting along with people

Life activities

Items

ICF

3. The possibility to go to bed and to get up at the time I want is (excellent, very good, moderate, poor, very poor) 4. The possibility to go to the bathroom when I want is (excellent, very good, moderate, poor, very poor) 5. The possibility to decide when I want to eat and drink is (excellent, very good, moderate, poor, very poor) The possibility to do shopping and cooking, or having the shopping and cooking done, the way I want is (excellent, very good, moderate, poor, very poor) The possibility to clean my house or have my house cleaned to the way I want is (excellent, very good, moderate, poor, very poor) The possibility to do or have somebody do the domestic activities when I want is (excellent, very good, moderate, poor, very poor) The possibility to do or to have somebody do the small repairs in my home the way I want is (excellent, very good, moderate, poor, very poor) My contribution to the activities at home the way I want is (excellent, very good, moderate, poor, very poor) The ability to spend my income the way I want is (excellent, very good, moderate, poor, very poor) The possibility to go and move about in my own house where I want is (excellent, very good, moderate, poor, very poor) The possibility to go and move about in my own house when I want is (excellent, very good, moderate, poor, very poor) The possibility to visit neighbours, friends or acquaintances when I want is (excellent, very good, moderate, poor, very poor) The possibility to make day trips, visits, and taking a holiday when I want is (excellent, very good, moderate, poor, very poor) The ability to spend my time the way I want is (excellent, very good, moderate, poor, very poor) Is your present state of health causing problems with your: Work (that is, paid employment)? Looking after the home (cleaning & cooking, repairs, odd jobs around the home, etc.)? Social life (going out, seeing friends, going to the movies, etc.)? Home life (that is, relationships with other people in your home)? Sex life? Interests and hobbies (sports, arts and crafts, do-it-yourself, etc.)? Vacations (summer or winter vacations, weekends away, etc.)? Concentrating on doing something for ten minutes? Remembering to do important things? Analyzing and finding solutions to problems in day to day life?

Participation d570

Learning a new task, for example, learning how to get to a new place? Generally understanding what people say? Starting and maintaining a conversation? Standing for long periods such as 30 minutes? Standing up from sitting down? Moving around inside your home? Getting out of your home? Walking a long distance such as a kilometre (or equivalent)? In the last 30 days, how much difficulty did you have in: Washing your whole body? Getting dressed? Eating? Staying by yourself for a few days? Dealing with people you do not know? Maintaining a friendship? Getting along with people who are close to you? Making new friends? Sexual activities? Taking care of your household responsibilities? Doing most important household tasks as well?

Participation d530 Participation d550, d560 Participation d6200 Participation d6402 Participation d640 Participation d650 Participation chapter 6 Participation d870 Participation d4600 Participation d4600 Participation d460 Participation d4601, d4602, d920 Participation chapter 8 & 9 Participation d850 Participation d630-d669 Participation d9205 Participation d750, d760 Participation d7702 Participation d920 Participation d920 Body function b140, activity d160 Body function b144 Body function b1646, activity d175 Activity d130-d159 Activity Activity Activity Activity Activity Activity Activity

d310 d3500, d3501, d3502 d4154 d4104 d4600 d4600 d4501

Activity d5101 Activity d540 Activity d550 n.q. Participation d740 Participation d7500 Participation d760 Participation d7500 Participation d770 Participation d630-d649 Activity d640 (continued overleaf )

583



Work or education

Participation in society

8 WHOQOL

Physical health

Psychological health

Social relationships Environment

9 SF-36

Role functioning physical

Items

ICF

Getting all the household work done that you needed to do? Getting all the household work done as quickly as needed? In the last 30 days, how much difficulty did you have in: your day to day work/school? doing your most important work/school tasks well? getting all the work done that you need to do? getting your work done as quickly as needed? In the last 30 days: How much of a problem did you have in joining in community activities (for example festivities, religious or other activities)? How much of a problem did you have because of barriers or hindrances in the world around you? How much of a problem did you have living with dignity because of the attitudes and actions of others? How much time did you spend on your health condition, or its consequences? How much have you been emotionally affected by your health condition? How much had your health been a drain on the financial resources of you or your family? How much of a problem did your family have because of your health problems? How much of a problem did you have in doing things by yourself for relaxation or pleasure? To what extent do you feel that physical pain prevents you from doing you what you need to do? How much do you need any medical treatment to function in your daily life? Do you have enough energy for everyday life? How well are you able to get around? How satisfied are you with your sleep? How satisfied are you with your ability to perform your daily living activities? How satisfied are you with your capacity for work? How much do you enjoy life? To what extent do you feel your life to be meaningful? How well are you able to concentrate? Are you able to accept your bodily appearance? How satisfied are you with yourself? How often do you have negative feelings such as blue mood, despair, anxiety, and depression? How satisfied are you with your personal relationships? How satisfied are you with your sex life? How satisfied are you with the support you get from your friends? How safe do you feel in your daily life? How healthy is your physical environment?

Activity or participation d640 Activity or participation d640

Have you enough money to meet your needs? How available to you is the information that you need in your dayto-day life? To what extent do you have the opportunity for leisure activities? How satisfied are you with the conditions of your living place? How satisfied are you with your access to health services? How satisfied are you with your transport? During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? Cut down the amount of time you spent on work or other activities? Accomplished less than you would like Were limited in the kind of work or other activities? Had difficulty performing the work or other activities (for example, it took extra effort)

Activity d820/d850 Participation d820/d850 Participation d850 Participation d850 Participation chapter 9 Environment Environment chapter 4 n.q. n.q. Participation d870 Environment e310 Activity d920 Activity in general Activity of self care/domestic life b1300 Activity Function b1343 Participation/activity chapter 5 Participation chapter 8 b140 b1801 b180 b126 Participation chapter 7 Participation d7702 Environment chapter 3 Environment in general Environment chapter 2 ‘Natural environment and human made changes to environment’ Participation d870 Environment e535 Environment e555 e115, e120, e155 e580 e120, e540 Participation chapter 8 Activity general Participation in general (autonomy) Participation chapter 8 Activity chapter 8 (continued overleaf )

584


Items

ICF

Role functioning emotional

During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? Cut down the amount of time you spent on work or other activities? Accomplished less than you would like? Didn’t do work or other activities as carefully as usual?

Participation chapter 8

Activity general Participation Participation

n.q.: not quantifiable

The items of the dimension physical independence aim at the environment. Although in itself questions on the environment are not aimed at the participation, they provide explicit insight in the environmental barriers or facilitators. The second dimension of the CHART aims at the mobility component. It includes both items that measure involvement as well as items that measure activities. For instance, the question on entering and exiting the home is an example of an activity, while the question if the transportation allows getting to all places the person would like to go, presupposes participation and autonomy. There are also two questions that cannot easily be attributed to the activities or participation component: having independent access to rooms or telephone or TV and the question if the person can use transportation independently. Both questions include merely the execution of a task (doing things) as well as involvement in life situations (communication with others, autonomy). The items in the dimension on occupation, homemaking, recreation and hobbies are all directed to involvement in life situations, and mostly in interaction with other persons. The same goes for the dimension of social integration, which in itself can be seen as part of the definition of participation. Finally, it also applies to the dimension of economic self-sufficiency. The questions in this dimension ask for the annual income and the amount of money the respondent has spent on medical care. The question and the answers do not provide information if the person is dependent or independent in an economic sense. The PHQ (Perceived Handicap Questionnaire) was validated with spinal cord injury patients.7 Each of the five dimensions consists of two – almost equal – questions, one for a comparison with other able-bodied persons without a handicap, the second for comparison with other people with the disease or disorder. So the respondent has to compare himself with others. In fact this instrument is aimed at the subjective experience of involvement. All items of the dimensions are formulated

in terms of capacity. However, as the items include terms like involvement, autonomy, engagement and the possibility to sustain economic independence, we define them as measuring participation and not activity. The third questionnaire is the LHS (London Handicap Scale).8 This instrument was developed to quantify handicap at an interval level of measurement. It was validated among several groups of patients with chronic diseases. The formulation of most items and the response categories is ambiguous. The response categories range from merely the execution of tasks (activity component) to involvement and autonomy (participation component). For instance, the first dimension on mobility asks if the health status stops the respondent from getting around. The response categories that represents the severest level measure on an activity level, referring to confinement to bed or just moving around in a single room. The response category representing the best state refers more to participation, by stating that the person can go to most places the person wants. The items measuring social integration and economic self-sufficiency aim most at participation, because all response categories measure a certain state of social involvement. The item measuring orientation on the other hand measures almost the complete range of components, starting with the body functioning component of being unconscious to activity level (having problems with hearing, seeing etc) to involvement (fully understanding the world). A Dutch translation of the LHS is under validation at this moment. Also, in the Netherlands, a child version of the LHS is under development. In the Netherlands, both the translation of the adult version and the child version are used to generate a kind of ‘participation – utility’ measure. The fourth survey instrument is the Reintegration to Normal Living Index (RNL-index).9 Psychometric properties of the index were assessed using three samples of patients with varied diagnoses from several settings. The RNL-index consists of 11 questions referring to 585

R. J. M. Perenboom and A. M. J. Chorus eight dimensions. The RNL appears to assess global function by considering both patients’ perceptions and objective indicators of physical, social and psychological dimensions. In our opinion, with exception of two items, the remaining items all refer to participation, because autonomy of doing certain activities was incorporated into the items (see table 2). Psychometric properties of the Impact on Participation and Autonomy Questionnaire (IPA) were examined based on five diagnostic groups from outpatient clinics of two rehabilitation centres.10, 11 The questionnaire consists of four sub-scales with a total of 23 items: social relationships, autonomy in self-care, family role and mobility and leisure time. With exception of the items ‘the respect I receive from partner and family’ and ‘the respect I receive from acquaintances’ the remaining items measure involvement in life situations and autonomy of the individual. Autonomy is measured by posing questions in the following way ‘the possibility to do or have somebody do . . . the way I want’. Part II of the Nottingham Health profile (NHP) contains seven questions on participation.12 Psychometric properties were reported for several disease states. The NHP is intended for primary health care, to provide a brief indication of a patient’s perceived emotional, social and physical health problems. The items refer to paid employment, taking care of the household, leisure and recreation and relationships. The WHODAS II (WHO Disability Assessment Schedule 2) has been under development by WHO for several years (www.who.int/icidh/whodas/generalinfo.html). Psychometric testing of the WHODAS II has been rigorous and extensive. In 1998, an earlier draft (89 items) was tested in field trials in 21 sites and 19 countries. Based on psychometric analyses and further field testing in early 1999, the measure was shortened to 36 items, and a 12-item screening questionnaire was also developed. In late 1999, the WHODAS II underwent reliability and validity testing in 16 centres across 14 countries. This instrument includes seven domains as well as a global disability score, ranging from understanding and communication to participation in society. The first dimension on understanding and communication aims at the level of body functioning and activity. Sometimes, it is not possible to distinguish between these two components. For instance, the question about concentrating on doing something for ten minutes can be coded on a function level (sustaining attention (b1400) as well as on an activity level (focusing attention d160)). Other dimensions are measured on the activity level or combinations of activity and participation. For instance, 586

the item on getting all the household work done as quickly as needed can be seen as being involved in society by trying to meet certain norms and values, but on the other hand it can also be seen just at the activity level (doing household activities). A few items refer to the Environmental context. The item on ‘how much of a problem a person has because of barriers or hindrance in the world around one’ refers to the environment in general, while the item on attitudes refers to a specific domain in the environmental component. Some items of the WHODAS II could not be classified according to the ICF. The item: ‘staying by yourself for a few days’ has no equivalence in the ICF. The same goes for the items ‘how much time did you spend on your health condition’ and ‘how much have you been emotionally affected by your health condition’. The WHOQOL (WHO Quality of life) was found to be reliable and valid to be used in a diverse range of cultures.13 It is not measuring actual participation or execution of tasks, but the level of satisfaction in carrying out these activities or in participating. Some items are measured at the body level functioning (for instance satisfaction with sleep and concentration). A special dimension aims at the environment. However, in this dimension one item refers more to participation (economic self-sufficiency) then to the environment as defined in the ICF. The last instrument we considered measuring participation are two parts of the SF-36 (Short Form 36 General Health Questionnaire): the part on role functioning physical and role functioning emotional.14 The first sub-scale asks about four problems the respondent has encountered due to physical health problems. Two problems are measured on the activity level (cutting down the amount of time spent on work and difficulty in performing the work). The other items measure role difficulties on a participation level: accomplishing less than you would like and limitations in the kind of work. These problems refer to a certain set of social norms and values. The second sub-scale asks about three problems the respondent has encountered because of an emotional problem (feeling depressed or anxious). Two items measure the role problems on a participation level: ‘accomplishing less than you would like’ and ‘didn’t do work as carefully as usual’. Discussion In this article, we have evaluated nine generic instruments published in English that measure some domains of the participation list of the ICF. The items of the

Measuring participation according to ICF survey instruments were judged upon whether the question posed is directed to execution of a task (activity level) or to actual or perceived involvement in life situations, including autonomy and societal roles (participation-level). We did not use the qualifiers of capability or performance to distinguish between activity level and participation level as proposed by the ICF. We think that performance in itself does not necessarily refer to participation, while not performing does not necessarily mean that someone is not participating. For instance, participation is also being in control as measured by questions in the following way: ‘the possibility to do or have somebody doing things the way I (the respondent) want’. A person who is physically completely dependent on others but who is still in control of how and when things are done according to his or her wishes, is participating by fulfilling his societal role and personal goals. With this definition, we conclude that most instruments evaluated measure one or more domains of the activities and participation list of the ICF, but none of them measure all the domains. Moreover, most instruments are not solely dedicated to measure participation. Most instruments include also items or response categories that aim at the activity level or even at the body function level of the ICF. Instruments closest to measuring solely participation are the Perceived Handicap Questionnaire and the London Handicap Scale. Of these, the PHQ is measuring the perception of participation (in comparison with others) rather then actual participation. Considering the London Handicap Scale, the items are formulated in terms of participation, but the response categories include all components of the ICF, from body function to participation. These components are used to measure the level of hindrance to participate. The more the response categories include body function level, the more the person is restricted in participation. With our definition of participation we are aware that this evaluation is just one interpretation and therefore open for discussion. We, the authors, have made an attempt to distinguish between items measuring at the activity level and at the participation level. With this article, we hope to contribute to the opera-

tionalization of the concept of participation according to the ICF.

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