Appendix. Parent questionnaire (Baseline) 1. KIDSCREEN 10-item parent proxy ( index/ )

Transcription

1 Appendix Parent questionnaire (Baseline) 1. KIDSCREEN 10-item parent proxy ( index/ )

2 2. Explain in your own words your experience of your child's well-being 3. What is your child's age? Please enter the number of years: 4. Please indicate who completes the questionnaire *) the mother of the child *) the father of the child *) the child s foster mother *) the child s foster father *) another guardian of the child Please consider the treatment your child has recently received at the hospital 5. Was this the first time your child was treated or examined in a child psychiatric clinic in a hospital? *) yes *) no, this was the 2 nd time *) no, this was the 3 rd time *) no, many times before *) don t know / don t remember 6. How long did the process last this time? *) Please enter months/weeks/days *) Still going on 2

3 7. How motivated were you to get started with treatment / examination at the start of the process? How motivated were your child to get started with treatment / examination at the start of the process? Parent: Child: *) Very motivated *) Very motivated *) Motivated *) Motivated *) In between *) In between *) Unmotivated *) Unmotivated *) Very unmotivated *) Very unmotivated 8. Explain your / your child s motivation or absence of motivation here: 9. What diagnosis within the Autism Spectrum did the investigation result show? 10. Did the investigation result in other concurrent mental health diagnosis? 11. Explain your reaction to the investigation result: Now please think about the time after the hospital 12. Did you feel confident about being discontinued from the child psychiatric clinic in a hospital? *) Yes *) Partly *) No *) Don t know *) Not yet discontinued 13. Explain your answer: 14. Has a network meeting about the child been held? *) Yes *) a meeting has been planned but not yet held *) No 3

4 15. Has a (new) plan been made for what initiatives should be taken in relation to.. a)..your child's academic participation in school b)..your child s social participation in school c)..your child at home (structuring the everyday, using pictograms etc.) d)..your child s participation in leisure and social activities e)..if relevant, siblings and their reactions *) Yes *) Partly *) No *) Not relevant 16. When your child was terminated from the child psychiatric clinic in a hospital, did you experience the child needing further treatment or support (in addition to the support that may have already been initiated)... a)..from a child psychiatric clinic b)..from an outpatient psychiatrist c)..from an outpatient psychologist d)..from outpatient doctor e)..from resource teacher in school f)..from support pedagogue in after school club g)..from therapists/professionals at home h)..from support pedagogue/professionals in leisure time *) Yes *) No *) Don t know 17. Does your child receive support from any of the above mentioned professionals, if yes which? 18. Have you (the child's parents) within the last six months, applied for the following.. a)..coverage of lost earnings (one or both parents) b)..grants for or full payment for part time care of your child c).. Financial support for additional expenses, such as special leisure activities, transportation, purchase of ear protection or anything else d)..support for the whole family, eg family therapy, home support or the like e)..support for siblings, eg psychological assistance, group therapy, support at school or other f)..support from a support educator in leisure time g)..transition of child to special class or to other school class h)..resource teacher for child in actual school class i)..resource teacher for child in after school club *) Yes *) No 4

5 19. Have you received any of the above mentioned, if yes which? 20. Based on your experiences, do you consider it easy or difficult to get the support needed.. a)..in relation to get the child in a suitable school class? b)..in relation to get support from a resource teacher in relevant school class? c)..in relation to find relevant leisure activities for the child? d)..in relation to have support for the family as a whole? e)..in relation to find relevant treatment for the child s challenges with for instance sleep-problems, eatingproblems, school refusal etc.? *) Very easy *) Easy *) In between *) Difficult *) Very difficult *) Don t know *) Not relevant 21. How do you experience the efforts that are being made to support your child.. a). in school classes b)..in after school club c)..from persons taking part time care of your child d)..from yourself as parents e)..from caseworker in local municipality to support you as a family f)..from friends and family to support you as a family *) Very good *) Good *) In between *) Bad *) Very bad *) Don t know *) Not relevant 22. Is there anything else relevant to tell about the support and initiatives given to your child / family? Please write here: Finally, a few questions about yourself and your family 23. What is your own age? 24. Is Danish the language your speek the best? *) Yes *) No, please write which language: 25. What is your highest completed education or school class? 26. At this moment, what is your primary income? 5

6 27. Do you have any mental health diagnosis? 28. Does your child live in one family home or more, for instance in the case of seperated parents living in each their home? *) One home *) Two homes at mother and father respectively *) Two homes at parents and institution respectively *) Else, please describe: 29. Together with whom does your child live? *) Mother *) Father *) Siblings, no.: *) Stepmother *) Stepfather *) Stepsibling, no.: 30. If you have other comments about the child's well-being and everyday life, or about the support you and your child receive or not receive, I am very interested in your expanding here: 6

7 Parent questionnaire (follow up) Dear Parents. Some questions may be difficult to answer. Please provide the answer closest to your experience. Some questions are repetitions from the questionnaire you received a while ago, but they are still important to get your answers to again! I very much appreciate your time, thank you very much! Questions from baseline repeated in follow-up: 1 (KIDSCREEN), 2-4, 9, 10, 17-22, 30 Additional questions in follow-up: 1. Do you feel that it has been important to be informed about the child's autism diagnosis.. a)..have you got a better understanding of the child? b)..has the child s second parent got a better understanding of the child? c)..has the child got a better self-understanding? d)..have the child's siblings (think about the oldest) got a better understanding of the child? e)..have the child's other family (eg grandparents) got a better understanding? f)..have the child's teachers got a better understanding of the child? g)..have the child's classmates got a better understanding of the child? *) To a large extent *) To some extent *) To a lesser extent *) Not at all *) Don t know *) Has not been notified 2. Please explain how knowledge of the autism diagnosis has been/not been important: 3. Has any of the following initiatives/support been applied after the investigation process (Regardless of whether it is directly the investigation that has led to the effort): a)..(more) support from resource teacher in school? b)..(more) support from pedagogue (or other professional) in after school club? c)..more obvious structure in class, taking into account the child s need? d)..agreement on shorter school days, taking into account the child s need? e)..possibility for withdrawal to separate room or shielded space for the child in school? f)..possibility for withdrawal to separate room or shielded space for the child in after school club? g)..shift of school class to another school? h)..shift of school class to another class at relevant school? *) Yes *) Partly *) No, did not apply *) No, applied but received refusal *) Awaiting reply 7

8 4. If your child has changed school after the investigation (recent investigation), what was the reason for the school change? *) Has not changed school after (last) examination *) Needed more academic challenges *) Had difficulties keeping up with the teaching *) Needed education aimed at children with autism *) Felt sad about going to school *) Had few or no friends in class *) Was bullied *) Moving to new address *) Other reasons: 5. What type of school class does your child currently attend? *) Ordinary state school class (without individual support in class) *) Ordinary state school class (with support from resource teacher) *) Both in state school class and in special school classes *) Special school class in state school *) Other type of school class: 6. What type of school class has your child predominantly or always attended? (*) possible answers similar to 5.) 7. Does your child receive individual support from a resource teacher in class? *) No *) Yes, how many hours per week: 8. If yes, does the resource teacher has special knowledge upon autism? *) No *) Yes, partly *) Yes, very much *) Don t know 8

9 9. To what extent has the school involved your knowledge as parents in organizing the child s school days? *) To a large extent *) To some extent *) To a lesser extent *) Not at all *) Don t know 10. Have you (the children s parents) during examination or afterwards had contact to school psychologist about your child? *) No *) Yes 11. If yes, who made the initiative to this contact? *) The child s parents *) The child s teachers *) A healthcare professional outside school *) Hospital psychiatry clinic during examination *) Schools psychologist *) Other: 12. How did the school psychologist so far help? *) Treatment/therapy/advising for the child *) Advising at home *) Assigning help for the child at home *) Coordination between you and the child s teachers *) Coordination between other parts such as municipal administrations *) Supporting applications for aids or support lessons for the child *) Did not help so far *) Other: 13. Did you at home make any changes after (latest) diagnostic process? (regardless of whether it is directly the investigation that has led to the changes) *) Started to use pictograms/clear overviews of daily activities *) Started to take more into consideration the child s needs when planning family time *) Started to make more structure by using timer and timing of certain activities *) I/we have reduced our working hours per week to have more time for the child *) I/we are having a child professional to carry out an investigation of the child and family support needs (called a 50 in Danish legislation) *) Yes *) Partly *) No *) We did already before the diagnostic process 9