The Participation Scale
~Measuring a key concept in public health~
By Dr. Wim H. van Brakel

1. Aim of the research project
To develop an interview-based scale to measure (social) participation restrictions

2. Phases of scale development
Phase 1
- Item collection
- Development of draft questionnaire
- Pilot testing
Phase 2
- Item reduction

Phase 3
- Psychometric testing of draft scale

Phase 4
- Development of (training) manual
- Beta-testing

3. Example question: Do you have the same respect in the community as your peers?
If Yes go to next question (no problem)
If Sometime or nocHow big a problem is that for you?
- No problem
- Small problem
- Medium problem
- Large problem

4. Phase 3 psychometric testing
Validity against expert score
Inter-interviewer reliability
Stability
Discrimination between clients and controls
Responsiveness to change.
5. Phase 3: main results
18-item scale (in 7 major languages)
Median duration < 20 minutes>
'Vital' statistics
Scale use: 100%
Cronbach's alpha 0.92
Factor analysis: first factor 80+%
Reliability coefficient (ICC): 0.80
Stability coefficient (ICC): 0.83

6. Participant scale: (there are 18 questions)
No. Participation Scale Compared to your peers . . . Not specified, not? answered Yes Sometimes No Irrelevant, I donft? want to, don't have to NO problem Small Medium Large SCORE
0 1 2 3 5
1 Do you have equal opportunity as your peers to find work? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
2 Do you work as hard as your peers do? (same hours, type of work etc) 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
3 Do you contribute to the household economically in a similar way to your peers? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
4 Do you make visits (travel) outside your village as much as your peers do? (except for treatment) e.g. Bazaars, melas, nearby villages? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
5 Do you help other people (e.g. neighbours, friends or relatives)? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
6 Do you take as much part in casual recreational/social activities as do your peers? (e.g. sports, chat, meetings) 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
7 Are you as socially active as your peers are? (e.g. in religious/community affairs) 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
8 Do you visit other people in the community as often as other people do? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
9 Are you comfortable meeting new people? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
10 Do you have the same respect in the community as your peers? 0
[If sometimes, no or irrelevant] how big a problem is it for you? 1 2 3 5
11 Do you move around inside and outside the house and around the village / neighbourhood just as other people do? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
12 In your village, do you visit all the public places/common places? (including schools, shops, offices, market and tea/coffee shops) 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
13 Do you have opportunity to take care of yourself (appearance, nutrition, health, etc.) as well as your peers? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
14 In your home, do you do household work? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
15 In family discussions, does your opinion count? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
16 In your home, are the eating utensils you use kept with those used by the rest of the household? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
17 Do you take part in major festivals and rituals as your peers do? (e.g. weddings, funerals, religious festivals) 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5
18 Do you feel confident to try to learn new things? 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 5

TOTAL

Name: _________________________________________


Age: ____ Gender: ______


Reason for the assessment: ___________________________


Interviewer: _____________________________________


Date of interview: __/__/____


Grades of participation restriction
No significant restriction Mild restriction Moderate restriction Severe restriction Extreme restriction
0 - 12 13 - 22 23 - 32 33 - 52 53 - 90


Disclaimer: The Participation Scale is the intellectual property of the Participation Scale Development Team. Neither the Team or its sponsors can be held responsible for any consequences of the use of the Participation Scale.



7. Before using Participation Scale.
Preparations before using the Participation Scale
1 Communicate your interest to use the new Participation Scale to the Participation Scale Development Team (see Preface)
2 Obtain the latest version of the scale and the Training Manual
3 Translate the Participation Scale according to the translation protocol in Annex 4
4 Translate the Q/Q document
5 Decide how the scale will be used (who will be interviewed, who will do conduct the interviews)
6 Decide to whom people scoring positive on the scale will be referred and what will be the procedure for deciding on rehabilitation assistance, if this is not already in place
7 Train the staff involved using this manual




Instructions for the Participation Scale interview

1. The interviewer must read the Q/Q thoroughly before interviewing to get an understanding of the underlying concept of the questions.
2. The interview may take approximately 20 minutes.
3. All questions must be asked and the answers recorded in the appropriate boxes.
4. Ask the questions on scale exactly as they are written on the form.

? If the respondent does not understand the question, repeat it in the same way it is written on the form.
? If the respondent still does not understand it refer to the Q/Q and ask the prompt question as written.
? If the person continues to have difficulty understanding the question, use one or more of the examples in Q/Q to further clarify the question.

5. Do not translate or paraphrase the questions during the interview.
6. Listen to the respondent and record his/her answer in the form as answered. Do not guess his/her answer.
7. If the person digresses from the question bring her/him back to the question and explain that (s)he may talk about or discuss the issue at the end of the interview.
8. If the respondent answers 'YES' to any of the questions, do not ask whether it is a problem for him/her. Circle '0' in the 'Yes' box and go directly to the next question.
9. If the respondent answers 'Sometimes', 'No', or something like "This is irrelevant for me, I don't want to, don't have to", check the appropriate box with a ? (See the example below).
10. Ensure privacy as much as possible while administering the questionnaire.
11. Give the freedom to the respondent not to reply to any question (s)he may feel uncomfortable with.
12. When scoring a question, circle the number that corresponds to the answer given and write the same number in the last box on the right in the same row. See sample below:

8. Uses of a participation scale
Needs assessment
Monitoring
Evaluation
Research
Advocacy
Risk assessment (disease control)

9. Conclusions
a valid and reliable generic instrument to measure client-perceived participation
a standardised measure for comparison between clients, interventions and programmes
for use at field level and in institutions; staff should be trained, but specialist training not necessary
suitable to collect information for programme planning and advocacy work.
10. Note