Patient Perspective Engagement

Membership of a Support Group

Yes	0
No	0
Formerly (Not Currently)	0
I Don’t Know	0
Not answered	0

Discussing my Journey

I’m comfortable talking about it because it raises awareness	0
I’m not comfortable talking about it	0
I would prefer not to talk about it but I’m comfortable talking about it when asked	0
I am careful about who I talk to about my journey	0
I’m not sure	0
Not answered	0

Reason(s) for Support Group Membership

To get information about services available	0
To get information about treatment options	0
To get information about the latest research	0
To share the story of my own brain tumour journey	0
To hear about other peoples brain tumour journey	0
To be involved socially with others on a similar journey	0
To have someone to talk to	0
To have someone to help with some day to day living tasks eg. transport	0
To offer my support to other brain tumour patients and carers	0
Other *	0

Success of the Support Group

Information about services available	0
Information about treatment options	0
Information about latest research	0
Someone to talk to	0
The opportunity to share my brain tumour journey	0
The opportunity to hear about other peoples brain tumour journey	0
It has provided an understanding social setting	0
Someone to help with some day to day living tasks eg. transport	0
I have been able to offer support to other brain tumour patients and carers	0
It has not really helped at all	0
Other *	0

Reasons for not belonging to a support group

I have fully recovered and no longer need support	0
The support group I was a member of didn’t offer me the support I needed	0
There were conflicts within the group that made it difficult to stay	0
I have never been made aware of the existence of a support group	0
The support group meets at a time and place that is not convenient for me	0
I haven’t felt that a support group is beneficial to me	0
I’m too unwell to travel to a support group meeting	0
Other *	0