Patient Perspective Support

When did you reach out for support? *

When I was first diagnosed 0
Just before surgery 0
Just after surgery 0
During my stay in hospital 0
Soon after I left hospital 0
Weeks after leaving hospital 0
Months after leaving hospital 0
I didn’t reach out for support 0
I don’t know 0
Not answered 0

What support services (if any) did health care professionals inform you of?

Brain Tumour Alliance Australia 0
Cure Brain Cancer Foundation 0
Local Rehabilitation Hospital 0
Local Counselling Service 0
None 0
Other * 0

Which Financial Support Services are needed.

Assistance in dealing with Financial Institutions 0
Assistance in dealing with Utility Providers 0
Information about Hardship Grants 0
Information about Emergency Relief Services 0
Information about where to get financial help 0
Assistance with accessing Superannuation 0
Assistance with Child Care Subsidies or Grants 0

What sort of support services do you feel could be made more available in your ongoing brain tumour journey?

Better counselling services 0
More accessible support groups 0
Better information from government agencies 0
Availability of a Care Coordinator 0
Better information about obtaining financial support 0
Disability Parking Information 0
Home Help Information 0
Not Applicable 0
Other * 0

Areas of Family Support Important to You

Being able, if required, to advocate on my behalf 0
Understanding personality changes that may occur 0
Being able to assist me with various tasks 0
Being prepared to take up slack at home 0
Being able to communicate honestly with family and friends 0
Other * 0

INITIAL FAMILY/FRIENDS SUPPORT

My partner or spouse accompanied me to all of my appointments 0
I was on my own 0
A friend accompanied me to most or some of my appointments 0
My late husband attended the initial consultation and then after his passing my two sons accompanied me 0
A friend accompanied me to all of my appointments 0
My partner or spouse accompanied me to most or some of my appointments 0
A parent or guardian accompanied me to all of my appointments 0
Not answered 0

Overall Effect on Family *

It has brought us closer together 0
It has adversely affected our family 0
It hasn’t affected us at all 0
I don’t know 0
Not answered 0

Do you feel isolated from your support? *

NO, I don’t feel isolated 0
YES, I do feel isolated 0
I’m not sure 0
Not answered 0

Has your Employer/Workplace been supportive of you?

Yes, they have been supportive 0
No, they haven’t been supportive 0
Not Applicable 0
Not answered 0

Main responses from Family and Friends

Making allowances for changes in behaviour 0
Making allowances for diminished ability to contribute to household 0
Assisting with tasks that otherwise I would complete 0
Being able to communicate honestly with family and friends 0
Recognising that I am not completely recovered 0
Providing financial support 0
I have been alienated from my family 0
Some family members think that I am over-reacting and malingering 0
Some friends think that I am over-reacting and malingering 0
Other * 0