CCSN Patient and Caregiver Volunteer Advocacy Survey

The Canadian Cancer Survivor Network (CCSN) is conducting a survey on the impact of patient advocacy on cancer patients, survivors, family members and caregivers.

The results of this survey will help CCSN to learn what kind of volunteer advocacy campaigns you have been involved in to promote change, whether it has been to reduce wait times, to improve access to cancer drugs and other treatments, or to inform key decision makers about issues and problems in our healthcare or cancer care system.

The first part of this survey consists of a few questions about volunteer advocacy activities you have been involved in.

The second part of this survey gives you the opportunity to share what your involvement in advocacy means to you.

The results of this survey will help CCSN prepare a presentation for the upcoming conference of the Canadian Association of Psychosocial Oncologists. This presentation will also be shared on CCSN's website after the conference.

THIS SURVEY CLOSES ON APRIL 19, 2013.

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* 1. Are you a:

Cancer patient or survivor

Caregiver

Family member of a cancer patient or survivor

Other (please specify)

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* 2. Please indicate what kind of cancer organization(s) you are a member of (please choose all that apply).

Local support group

Local group that raises funds for its activities

Regional organization

National organization

None at this time

Other (please specify)

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* 3. For how many cancer organizations do you currently volunteer?

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* 4. In a typical month, about how many hours do you volunteer in cancer organizations?

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* 5. Have you been involved in any advocacy campaigns designed to (please choose all that apply):

Raise public awareness

Educate key decision makers, like politicians or those working in our healthcare or cancer care system

Change public policy

Other (please specify)

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* 6. Were campaigns you were involved in:

Local

Regional

National

Other (please specify)

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* 7. Have you ever (please choose all that apply):

Written a letter to a politician or someone in his or her office about an issue important to you?

Written a letter to someone in authority at a hospital, cancer centre or other healthcare or cancer care facility about an issue important to you?

Called a politician or someone in his or her office to discuss an issue important to you?

Called someone in authority at a hospital, cancer centre or other healthcare or cancer care facility about an issue important to you?

Met with a politician or someone in his or her office to discuss an issue important to you?

Met with someone in authority at a hospital, cancer centre or other healthcare or cancer care facility about an issue important to you?

Other (please specify)

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* 8. Do you feel that you made a difference?

Yes

Not sure

Please explain your answer

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* 9. Turning to any experience you might have with working with media, have you ever (please choose all that apply):

Contacted a reporter or someone else working in the media (newspaper, radio, television, social media) about an issue important to you?

Done an interview with the media (newspaper, radio, television, social media) about an issue important to you?

Acted as a spokesperson for an organization about an issue important to you?

Organized a media campaign?

Other media experience (please specify)

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* 10. Do you feel that you made a difference?

Yes

Not sure

Please explain your answer

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* 11. Do you feel that your volunteer advocacy made a difference in better treatment for others?

Yes

Not sure

Please explain your answer

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* 12. What cancer issues have been the most important to you?

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* 13. Did being involved in advocacy make you feel:

	Less	About the same	More
Angry	Angry Less	Angry About the same	Angry More
Anxious	Anxious Less	Anxious About the same	Anxious More
Better	Better Less	Better About the same	Better More
Content	Content Less	Content About the same	Content More
Defiant	Defiant Less	Defiant About the same	Defiant More
Effective	Effective Less	Effective About the same	Effective More
Happy	Happy Less	Happy About the same	Happy More
Helpful	Helpful Less	Helpful About the same	Helpful More
Hopeful	Hopeful Less	Hopeful About the same	Hopeful More
Important	Important Less	Important About the same	Important More
Proud	Proud Less	Proud About the same	Proud More
Powerful	Powerful Less	Powerful About the same	Powerful More
Powerless	Powerless Less	Powerless About the same	Powerless More
Sad	Sad Less	Sad About the same	Sad More
Useful	Useful Less	Useful About the same	Useful More

Other (please specify)

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* 14. Has being involved in volunteer advocacy made you feel different about your illness?

Yes

Not sure

If yes or no, please explain

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* 15. Please provide any additional thoughts you would like to share about your advocacy experiences.

Thank you for completing this survey!