Appendix 6 – Questionnaire for Caregivers and Specialists

Background

  1. Job title 
  2. Qualifications/highest degree obtained 
  3. Do you work full time in this institution? How many days per week? How many hours per day? 
  4. For how long have you been providing care for people with disabilities? 
  5. Are you paid? How would you describe your work conditions? (Pay, working hours, holiday, etc.)

Responsibilities 

  1. How many persons with disabilities are you responsible for assisting? 
  2. What is the age range of the majority of individuals you provide care for? 
  3. Can you tell us about the exact activities you provide/conduct with people with disabilities in the institution? (Managing medication, bathing, eating, getting in and out of bed or chair, using toilet, shopping, managing money, using telephone and texting, helping to participate in social events, speech therapy, physiotherapy, occupation therapy). 

Needs of persons with disabilities 

  1. What is the primary condition of the persons you support and provide assistance to? (cognitive impairment, developmental/physical impairment, sensory impairment, Autism, others) please specify.
  2. Do you diagnose residents when they are first admitted to the institution? Who diagnoses people with disabilities and assess their needs? Do you often repeat the diagnosis? When? How often? 
  3. Thinking about the care and assistance you provide, what parts have been challenging most for you? 
  4. Do you think that disability inevitably debilitates individuals and prevent them from living autonomously and from making their own decisions? Why? /Why not? 
  5. What kind of support (family, medical, social, governmental, institutional) can help persons with disabilities to lead an autonomous life? 
  6. On average how many years/months do residents stay in the institution? 

Relationship with family

  1. How would you describe people with disabilities’ relationship with their family members? 
  1. Are they often in touch with their family members? Who? 
  2. How often do families visit their disabled family member at the institution? 
  3. Do they often take them to visit their home? How long do they usually stay there? 
  1. Tell us about the parents’ role in the development of persons with disabilities’ condition? (actual role and how it ideally can be). 
  2. Can you describe the socio-economic background of the majority of residents’ families? Is the family’s role affected by their educational and socio-economic background? Why? Why not? 
  3. How would you describe your relationship to people with disabilities’ parents/guardians? 
  1. Do you meet with all parents? 
  2. How often do you meet with them? 
  3. What do you usually discuss? 

Role of the institution

  1. What is the main reason why they are usually institutionalised? (general question). AND WHO usually admits persons with disabilities to the institution? 
  2. Are they usually admitted voluntarily and with their informed consent? Are they asked to sign an informed consent? If not who signs it? 
  3. Do they stay in the institution voluntarily?
  4. Did persons with disabilities attend day-care institutions before being institutionalised? Were they residents in other institutions?
  5. Are you the only caregiver responsible for people with disabilities? 
  1. IF YES, is your assistance covering all persons with disabilities’ individual needs? do you need other professional’s help to provide all the support they need? If yes, what kind of support and professionals can help you with your work? 
  2. IF NO, who is supporting you? Is it enough to cover all persons with disabilities’ individual needs? If no, why not? 
  1. Do you receive training from the institution? If yes what was it? How useful?
  2. Can you describe a typical day at the institution? What would you be doing? What would most residents be doing? 
  3. Do any of them exhibit psychological or intellectual illness symptoms? If yes What would be the percentage? Have they been officially diagnosed? Are they receiving support? By whom? 
  4. Do you know if any of the residents’ experiences bullying or harassment? If yes by whom?  

Expectations and planning towards the future

  1. Do you think that institutionalisation 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 deinstitutionalisation? 
  1. Where do most persons with disabilities end up in 5 years? 
  2. What could help persons with disabilities plan and own their lives in the future? 
  3. Any other thoughts/experience you’d like share?