The Unicorn Foundation Support Services Touchpoint Survey 2018

The Unicorn Foundation aims to provide patients with the highest level of support and education for our patients and carers.

Please provide your thoughts - your input will help us improve our services.

All questions are optional.

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* 1. How have you been affected by NETs?

Patient

Carer

Spouse/partner

Parent

Sibling

Friend

Other (please specify)

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* 2. What is your gender?

Male

Female

Other (please specify)

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* 3. Which category below includes your age?

17 or younger

18-20

21-29

30-39

40-49

50-59

60 or older

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* 4. Where do you live?

NSW

VIC

QLD

ACT

TAS

Other (please specify)

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* 5. What is your postcode?

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* 6. Do you live in a metropolitan or rural area?

Metropolitan (within one hour drive of major city)

Regional (over one hour drive from major city)

Other (please specify)

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* 7. Are you of Aboriginal or Torres Strait Islander heritage?

Yes, Aboriginal

Yes, Torres Strait Islander

Yes, both Aboriginal and Torres Strait Islander

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* 8. The Unicorn Foundation has established NET patient support groups in Sydney, Melbourne, Adelaide, Coffs Harbour, Canberra, Perth, Hobart, Launceston, Brisbane and the Gold Coast. Were you aware of these?

Yes, and I regularly attend sessions

Yes, and I have attended one session only or just a few sessions

Yes, but I have not attended any session

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* 9. If you have attended a group, please tell us which one(s) you have visited (optional)?

Brisbane

Gold Coast

Coffs Harbour

Sydney - The SAN

Sydney - Royal North Shore

Sydney - St George

Canberra

Melbourne

Adelaide

Perth

Hobart

Launceston

Other (please specify)

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* 10. Where have you obtained information about NET Patient Support Groups? (please select all that apply)

Doctor or other health professional

Family member/friend

Another patient

Unicorn Foundation Website

Facebook

Twitter

Other (please specify)

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* 11. If you have attended a NET patient support group (or would like to), please tell us why

	Strongly disagree				Strongly agree	N/A
To learn more about my illness and share my knowledge and experience with others	To learn more about my illness and share my knowledge and experience with others Strongly disagree	To learn more about my illness and share my knowledge and experience with others	To learn more about my illness and share my knowledge and experience with others	To learn more about my illness and share my knowledge and experience with others	To learn more about my illness and share my knowledge and experience with others Strongly agree	To learn more about my illness and share my knowledge and experience with others N/A
To feel like I’m a part of a community of people living the same condition	To feel like I’m a part of a community of people living the same condition Strongly disagree	To feel like I’m a part of a community of people living the same condition	To feel like I’m a part of a community of people living the same condition	To feel like I’m a part of a community of people living the same condition	To feel like I’m a part of a community of people living the same condition Strongly agree	To feel like I’m a part of a community of people living the same condition N/A
To learn strategies for living well with a NET	To learn strategies for living well with a NET Strongly disagree	To learn strategies for living well with a NET	To learn strategies for living well with a NET	To learn strategies for living well with a NET	To learn strategies for living well with a NET Strongly agree	To learn strategies for living well with a NET N/A
To share emotional support and encouragement with other members	To share emotional support and encouragement with other members Strongly disagree	To share emotional support and encouragement with other members	To share emotional support and encouragement with other members	To share emotional support and encouragement with other members	To share emotional support and encouragement with other members Strongly agree	To share emotional support and encouragement with other members N/A
To hear knowledgeable speakers	To hear knowledgeable speakers Strongly disagree	To hear knowledgeable speakers	To hear knowledgeable speakers	To hear knowledgeable speakers	To hear knowledgeable speakers Strongly agree	To hear knowledgeable speakers N/A

Comments

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* 12. Overall, how satisfied are you with the sessions you have attended?

Not at all satisfied

Extremely satisfied

N/A

Not at all satisfied

Extremely satisfied

N/A

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* 13. In particular, how satisfied are you with the following aspects

	Not at all satisfied				Extremely satisfied	N/A
Location	Location Not at all satisfied	Location	Location	Location	Location Extremely satisfied	Location N/A
Car parking	Car parking Not at all satisfied	Car parking	Car parking	Car parking	Car parking Extremely satisfied	Car parking N/A
Availability of public transport	Availability of public transport Not at all satisfied	Availability of public transport	Availability of public transport	Availability of public transport	Availability of public transport Extremely satisfied	Availability of public transport N/A
Day of meeting	Day of meeting Not at all satisfied	Day of meeting	Day of meeting	Day of meeting	Day of meeting Extremely satisfied	Day of meeting N/A
Time of meeting	Time of meeting Not at all satisfied	Time of meeting	Time of meeting	Time of meeting	Time of meeting Extremely satisfied	Time of meeting N/A
Length of meeting	Length of meeting Not at all satisfied	Length of meeting	Length of meeting	Length of meeting	Length of meeting Extremely satisfied	Length of meeting N/A
Size of group	Size of group Not at all satisfied	Size of group	Size of group	Size of group	Size of group Extremely satisfied	Size of group N/A
Speakers	Speakers Not at all satisfied	Speakers	Speakers	Speakers	Speakers Extremely satisfied	Speakers N/A
Group facilitator skills	Group facilitator skills Not at all satisfied	Group facilitator skills	Group facilitator skills	Group facilitator skills	Group facilitator skills Extremely satisfied	Group facilitator skills N/A
Information provided	Information provided Not at all satisfied	Information provided	Information provided	Information provided	Information provided Extremely satisfied	Information provided N/A
Emotional support	Emotional support Not at all satisfied	Emotional support	Emotional support	Emotional support	Emotional support Extremely satisfied	Emotional support N/A

Comments

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* 14. How much do you agree or disagree with the following statements. Attending a NET support group ...

	Strongly disagree				Strongly agree	N/A
Helps me gain information to better manage my condition	Helps me gain information to better manage my condition Strongly disagree	Helps me gain information to better manage my condition	Helps me gain information to better manage my condition	Helps me gain information to better manage my condition	Helps me gain information to better manage my condition Strongly agree	Helps me gain information to better manage my condition N/A
Helps me learn strategies for dealing with my situation	Helps me learn strategies for dealing with my situation Strongly disagree	Helps me learn strategies for dealing with my situation	Helps me learn strategies for dealing with my situation	Helps me learn strategies for dealing with my situation	Helps me learn strategies for dealing with my situation Strongly agree	Helps me learn strategies for dealing with my situation N/A
Helps me feel more connected to others who are living with the same condition.	Helps me feel more connected to others who are living with the same condition. Strongly disagree	Helps me feel more connected to others who are living with the same condition.	Helps me feel more connected to others who are living with the same condition.	Helps me feel more connected to others who are living with the same condition.	Helps me feel more connected to others who are living with the same condition. Strongly agree	Helps me feel more connected to others who are living with the same condition. N/A
Helps me feel more hopeful about living with my condition	Helps me feel more hopeful about living with my condition Strongly disagree	Helps me feel more hopeful about living with my condition	Helps me feel more hopeful about living with my condition	Helps me feel more hopeful about living with my condition	Helps me feel more hopeful about living with my condition Strongly agree	Helps me feel more hopeful about living with my condition N/A
Gives me an opportunity to help others with this condition	Gives me an opportunity to help others with this condition Strongly disagree	Gives me an opportunity to help others with this condition	Gives me an opportunity to help others with this condition	Gives me an opportunity to help others with this condition	Gives me an opportunity to help others with this condition Strongly agree	Gives me an opportunity to help others with this condition N/A

Comments

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* 15. Is there anything you would like to change about Unicorn Foundation support groups?

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* 16. Please tell us more if you have not attended a NET patient support group (or not returned to a group) - select all that apply

Location is not convenient

Day/time is not convenient

I'm not into group sessions

I don't think it would be helpful

I didn't know about the groups

Other (please describe)

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* 17. Would you be willing to help out with running a support group (with training and support)?

Yes

Other (please specify)

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* 18. If yes, what sort of things would you be able to assist with?

Setting up the meeting room/tidying up at end

Bringing snacks/refreshments (reimbursement available)

Sourcing guest speakers

Calling new group referrals

Facilitating meetings (e.g. welcoming attendees, reminding group guidelines, introducing speakers, wrapping conversation up at end of meeting, letting Kate know of any follow-up needs)

Other (please specify)

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* 19. If you live in a regional area, would you be interested in becoming involved in an informal local support network (e.g. catching up with others at a local café etc)?

Yes (please make sure you leave your contact details at the end of this survey)

N/A

Comments

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* 20. If yes, would you be happy to help coordinate such informal gatherings?

Yes (please make sure we have your contact details at the end of this survey)

Other (please specify)

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* 21. Are you on Facebook?

Yes

Other (please specify)

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* 22. Are you part of the Unicorn Foundation Private Discussion Group on Facebook?

Yes

No, not interested

No, I would like more information on how to be connected into this group (please make sure you leave your contact details at the end of this survey)

Comments

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* 23. How interested would you be in becoming involved in an online support group that was not based on Facebook?

Not interested at all

Highly interested

Not interested at all

Highly interested

Comments

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* 24. Have you ever participated in a webinar?

Yes - I have attended a Unicorn Foundation Webinar

Yes - I have participated in a webinar hosted by another organisation

I have watched previous webinars via You Tube

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* 25. Would you be interested in participating in future webinars hosted by the Unicorn Foundation?

Yes

Maybe...

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* 26. What topics would you be interested in being covered in a webinar?

	Not at all interested				Highly interested
NETs 101	NETs 101 Not at all interested	NETs 101	NETs 101	NETs 101	NETs 101 Highly interested
Understanding Imaging / Scans	Understanding Imaging / Scans Not at all interested	Understanding Imaging / Scans	Understanding Imaging / Scans	Understanding Imaging / Scans	Understanding Imaging / Scans Highly interested
Clinical Trials / Research	Clinical Trials / Research Not at all interested	Clinical Trials / Research	Clinical Trials / Research	Clinical Trials / Research	Clinical Trials / Research Highly interested
Understanding Biomarkers (blood tests and pathology)	Understanding Biomarkers (blood tests and pathology) Not at all interested	Understanding Biomarkers (blood tests and pathology)	Understanding Biomarkers (blood tests and pathology)	Understanding Biomarkers (blood tests and pathology)	Understanding Biomarkers (blood tests and pathology) Highly interested
Immunotherapy	Immunotherapy Not at all interested	Immunotherapy	Immunotherapy	Immunotherapy	Immunotherapy Highly interested
Liver Directed Therapy	Liver Directed Therapy Not at all interested	Liver Directed Therapy	Liver Directed Therapy	Liver Directed Therapy	Liver Directed Therapy Highly interested
PRRT	PRRT Not at all interested	PRRT	PRRT	PRRT	PRRT Highly interested
Surgery	Surgery Not at all interested	Surgery	Surgery	Surgery	Surgery Highly interested
How to work with a non NET specialist	How to work with a non NET specialist Not at all interested	How to work with a non NET specialist	How to work with a non NET specialist	How to work with a non NET specialist	How to work with a non NET specialist Highly interested
The role of exercise	The role of exercise Not at all interested	The role of exercise	The role of exercise	The role of exercise	The role of exercise Highly interested
Diet	Diet Not at all interested	Diet	Diet	Diet	Diet Highly interested
Complementary therapies	Complementary therapies Not at all interested	Complementary therapies	Complementary therapies	Complementary therapies	Complementary therapies Highly interested
Demystifying Insurance	Demystifying Insurance Not at all interested	Demystifying Insurance	Demystifying Insurance	Demystifying Insurance	Demystifying Insurance Highly interested
Work and NETs	Work and NETs Not at all interested	Work and NETs	Work and NETs	Work and NETs	Work and NETs Highly interested
Managing NETs as a family	Managing NETs as a family Not at all interested	Managing NETs as a family	Managing NETs as a family	Managing NETs as a family	Managing NETs as a family Highly interested
Symptom management	Symptom management Not at all interested	Symptom management	Symptom management	Symptom management	Symptom management Highly interested
Coping with uncertainty	Coping with uncertainty Not at all interested	Coping with uncertainty	Coping with uncertainty	Coping with uncertainty	Coping with uncertainty Highly interested
Sexuality	Sexuality Not at all interested	Sexuality	Sexuality	Sexuality	Sexuality Highly interested
Caring for someone with NETs, caring for the carers	Caring for someone with NETs, caring for the carers Not at all interested	Caring for someone with NETs, caring for the carers	Caring for someone with NETs, caring for the carers	Caring for someone with NETs, caring for the carers	Caring for someone with NETs, caring for the carers Highly interested

Other (please specify)

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* 27. Any other comments you would like to make about webinars?

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* 28. Thank you for completing this survey. Is there anything else you would like to add?

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* 29. Contact details (optional)

Name

Address

City/Town

State

Postal Code

Country

Email Address

Phone Number

Thank you so much for sharing your thoughts. To finish this survey, please click "Done".