Table 1 Key characteristics of the instruments included in the Range of instruments 2020-2022 (N=11)

Mild ID

Mild ID (youth)

Moderate ID

Severe ID

PIMD

Proxy assessment

Acquired brain injury

Sensory impairment

Physical impairment

7

9

8

8

2

8

7

5

5

Instrument developers

External agency

10

Care organisation 1 should be in the same row as External agency 10

Care organisation

1

Method of data collection

1. Dit vind ik ervan – Ik vertel [This is what I think – I tell]

Topic list with 10 subjects (feelings, body, family, circle of friends, help, inclusion, home, activities, choice/influence, feeling safe) that can be related to the quality of life dimensions of Schalock and Verdugo, investigative, appreciative interview of the client with the mentor as proxies to explore what is important to the client and how this has been experienced, a qualitative approach.

2. Dit vind ik ervan – Ik toon (PIMD target group ) [This is what I think – I show]

Topic list with same topics as in DVIE-Ik Vertel, observation/film recordings, a qualitative approach, dialogue based on film recordings of involved relatives and care professionals with clients who can only communicate non-verbally.

3. Ben ik tevreden [Am I satisfied]

Topic list with 8 topics (physical well-being, psychological well-being, personal development, self-determination, interpersonal relationships, participation, material well-being, rights) and a module for work and daytime activities, topics are closely related to the Schalock and Verdugo dimensions and are elaborated in a set of detailed guiding questions.

4. Ben ik tevreden (PIMD target group ) [Am I satisfied]

Observation list based on the same topics as in Ben ik tevreden, the topics (supported by a set of guiding observations) are applied in a dialogue between representative and mentor of the client (as proxies) who assess body language and the personal experiences of the client and determine the scores and actions.

5. C-toets OBC [C-test OBC]

Questionnaire specifically designed to elicit experiences of the care and treatment of children, youths and adolescents with mild ID or severe behavioural problems, both for the youths and their parents with fixed categories (mentors, goals and treatment, information, the group, rules; inpatient and outpatient version), the possibility to add several questions (e.g. safety, leisure, school, work, daytime activities) and a few open questions about what can be improved. Youths and parents participated in the redesigning of the questionnaire.

6. Clientervaringsonderzoek [Client experience survey]

Questionnaire, 8 quality of life dimensions (Schalock and Verdugo), 6 scales (mentors, support, living environment, daytime activities, leisure and contacts, care/support plan), instrument is based on 20 fixed questions and offers the possibility to add questions which can be tailored in a personalised way.

7. Mijn mening [My opinion]

Questionnaire, 4 categories (individual control, treatment, leisure & room furnishing, group climate & atmosphere), questions are checked for literacy, instrument is available as a web app.

8. Onze cliënten aan het woord [Our clients have their say]

Questionnaire and open questions, 7 modules (mentoring, living, daytime activities, leisure time, medical care, care/support plan and participation/complaints), 4 quality of life questions. Specific questions about what can be improved and what needs to be cherished are included.

9. Quality Cube

Questionnaire and open questions, 8 quality of life dimensions (Schalock and Verdugo), 4 enabling dimensions based on Inspectorate’s quality indicators, 5 service-related dimensions based on SERVQUAL model. Quality Improvement Charts are reported at the team level.

10. POS (Personal Outcome Scale )

Interviews by an independent interviewer guided by a questionnaire, which is based on Schalock and Verdugo’s dimensions (personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical, and material well-being), the POS is applied in many countries worldwide.

11. Cliënten over kwaliteit [Clients about quality]

Questionnaire/focus group meeting/mirror meeting, 3 questionnaires (living, daytime activities, ambulatory care) with 23 fixed questions and 4 open questions, followed by focus group meetings (6-12 persons with involvement of client board) and mirror meetings (6-10 clients and 6-10 employees).