Cavernous Malformation Canada Peer Support Survey

Peer Support Needs Assessment

Peer support is a supportive relationship between individuals who share similar life experiences. It involves helping to navigate through challenges, meeting needs within a complex system, sharing valuable resources and forming a meaningful connection to support one's journey and recovery. Cavernous Malformation Canada is seeking your input on what you would like from a peer support program. Your responses will be kept anonymous, and no identifying information is collected.

Please note peer support is not intended to provide or replace professional medical or psychological support

1.Please check the box that applies to you

I am a person living with cavernous malformation

I am a caregiver/family/friend of a person living with cavernous malformation

Both

2.If you would like to receive 1:1 peer support what would be important to you? Select all that apply

Receiving support from someone who has lived experience with cavernous malformation.

Learning more about cavernous malformation from someone who also has lived experience.

Having someone support me in navigating resources and healthcare system.

Having someone understand what its like to be a caregiver/family/friend of someone living with cavernous malformation.

Other (Please add what would be important to you)

3.If you were to receive peer support services would you want it to be:

Meeting virtually (email, skype, zoom) with a peer support volunteer for an extended period. Meetings and frequency of meetings would be arranged between you and your volunteer.

Meeting virtually (zoom, skype, phone) for 30-60 minutes with a peer support volunteer once to discuss cavernous malformation.

In a group setting (meeting via zoom with others who have CM, facilitated by a volunteer from Cavernous Malformation Canada)

Other (please specify)

5.If you are interested in a peer support group, what types of topics would you be interested in? Please select all that apply:

Navigating the Canadian health care system

Coping with symptoms

Loneliness

Understanding cavernous malformation

Social engagement with others who have cavernous malformation

Other (please specify)

6.Are there any barriers that you envision facing when trying to access peer support services. Please share:

7.Please feel free to share any comments or suggestions about peer support