Appendix 5 – Questionnaire for Parents and Families

Background information

1. Is your institutionalized relative receiving in-house care (resident) from this institution? (Interviewees must be family of a disabled person receiving in-house services)
2. Age of interviewee:
3. Gender:
4. What is your relationship to the resident? (Mother, father, sibling, …) 
5. Do you work? 

1. Full time/ part-time 

2. Nature of work

6. During the past 12 months, has there been a time when you or your household did not meet all of your essential expenses? (e.g., mortgage, rent, utility bills, medical care, food or groceries.
7. Do your caregiving financial responsibilities make it difficult to meet your essential household expenses?
8. What is the type of disability of your family member who is in the institution (cognitive impairment, developmental/physical impairment, sensory impairment, Autism, others). How old is he/she? 
9. What type of care does your relative need? How independent is he/she? Can they go to the bathroom, transfer, feed themselves, etc.
10. Was he/she able to attend school? If yes to extent if not, why not?

Received services

11. Do you receive, on behalf of your family member, any state-funded financial assistance? Is it enough to support your disability-related expenses? 
12. Does your family member receive any state-funded education or rehabilitation services? Please specify. 
13. Have you received help/counselling/training from a social worker, psychologist, counsellor, therapist, or physician because of your caregiving responsibilities? Useful?
14. What kind of support do you and your family member need to be able to help him/her live outside the institution? 

Relationship with family member

15. How do you usually support your family member at the institution? 
16. Are you often in touch with his/her close caregivers at the institutions? How do you communicate and what do you often talk about? 
17. How often do you visit your family member at the institution? 
18. Do you take them to visit home? 

1. If yes, how often? What do you do? And how does it affect your disabled family member?
2. If no, why not? 

Perceptions of the institution

19. What was the main reason why your family member was admitted to a residential institution? 
20. Was he/she admitted voluntarily and with their informed consent? 
21. Did he/she attend day-care institutions before being institutionalised? 

1. If yes, was it helpful? Why did he/she need be institutionalised afterwards?  
2. If no, why not?  

22. Were they in other residential institutions before?
23. How did you feel about putting them in an institution? 
24. How much does the institutionalization of your family member cost? How do you cover the costs? (Pay yourself, paid by the institutions itself, state-funded, charity, etc.) 
25. What do you think of the quality of services received by your disabled family member at the institution? 
26. Did you realize any improvement since your family member was first institutionalized? How did he/she improve? 
27. Are you regularly informed of your family member’s condition and progress? How often? Helpful? 
28. Do you think that institutionalization can help persons with disabilities improve their health and live an autonomous life in the future?  

1. If yes, how? 
2. If no, why not? And what can be helpful for deinstitutionalization? 

Expectations and planning towards the future

29. How long do you think he/she will stay in the institution? 
30. What kinds of activities are your disabled family member involved in at this time? (Job, school, religious activities, family events, sports and recreation, etc.) 
31. What kinds of activities you hope your family member to engage one year from now? What do you think can make this possible? 
32. Where do you think your family member will be in 5 years? 
33. What are the barriers to integrating persons with disability back in the society? (theoretical)