Feedback Survey: PILOT Sibling Support Program for Parents and Carers

Thank you for attending the pilot workshop for parents and carers of siblings of a child who lives with rare disease disability. We hope you found it useful. We would appreciate your feedback via this survey so that we can continue to improve the workshop and the resources provided. The survey should take about 5 minutes to complete.

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* 1. Did the workshop improve your understanding and awareness of the issues the sibling of a child living with rare disease disability may experience?

Yes

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* 2. How would you now (after the workshop) rate your understanding of these issues?

Excellent

Good

Poor

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* 3. Please rate how you found the following parts of the workshop

	Excellent	Good	Could be improved
Stig's sibling story	Stig's sibling story Excellent	Stig's sibling story Good	Stig's sibling story Could be improved
International research	International research Excellent	International research Good	International research Could be improved
Breakout groups	Breakout groups Excellent	Breakout groups Good	Breakout groups Could be improved
Discussion of parent/carer feelings	Discussion of parent/carer feelings Excellent	Discussion of parent/carer feelings Good	Discussion of parent/carer feelings Could be improved
Practical tools	Practical tools Excellent	Practical tools Good	Practical tools Could be improved

Please detail any suggestions you have for improvements/changes:

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* 4. Did you find Stig's sibling story (please tick whichever apply)

Useful

Relevant

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* 5. Do you feel the practical tools presented in the workshop will help you and your family?

Yes

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* 6. Do you feel you will be able to use any of these tools in your everyday life?

Yes

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* 7. How would you rate your perceived relevance/usefulness of the four different tools (1-5 where 1 = not that relevant to me/don’t see myself using this ever; 5 = can see myself using this regularly)

	1	2	3	4	5
The guilt reset	The guilt reset 1	The guilt reset 2	The guilt reset 3	The guilt reset 4	The guilt reset 5
Intentional attention/repair	Intentional attention/repair 1	Intentional attention/repair 2	Intentional attention/repair 3	Intentional attention/repair 4	Intentional attention/repair 5
Emotional boundary setting	Emotional boundary setting 1	Emotional boundary setting 2	Emotional boundary setting 3	Emotional boundary setting 4	Emotional boundary setting 5
Identity anchor/rebuilding identity	Identity anchor/rebuilding identity 1	Identity anchor/rebuilding identity 2	Identity anchor/rebuilding identity 3	Identity anchor/rebuilding identity 4	Identity anchor/rebuilding identity 5

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* 8. Do you think this workshop and your improved understanding of the issues siblings may face will lead to you making changes in your family life?

Yes

Possibly

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* 9. What overall rating would you give this event?

Excellent

Very good

Good

Poor

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* 10. Please add any other comments you would like to share with us eg, was there anything in the workshop you found particularly valuable/helpful or anything you feel needs more improvement?

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* 11. Will you take any specific actions as a result of attending this workshop?

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* 12. You were/will be provided with a number of resources including the toolkit and personal journal. Are you happy for us to follow up in a couple of months to find out whether these have been useful to you?

Yes

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* 13. Would you like the opportunity to participate in a follow up online discussion group with this group of parents and carers in a few months’ time?

Yes

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* 14. Would you be willing to participate in a 20-minute phone call to further discuss your feedback if we feel that would be useful to us?

Yes

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* 15. Your name

Thank you again for your participation in this pilot program and for providing your feedback.