Patient Perspective Support

When did you reach out for support? *

When I was first diagnosed 11
Just before surgery 2
Just after surgery 0
During my stay in hospital 0
Soon after I left hospital 0
Weeks after leaving hospital 1
Months after leaving hospital 0
I didn’t reach out for support 3
I don’t know 1
Not answered 11

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

Brain Tumour Alliance Australia 1
Cure Brain Cancer Foundation 2
Local Rehabilitation Hospital 4
Local Counselling Service 1
None 0
Other * 1

Which Financial Support Services are needed.

Assistance in dealing with Financial Institutions 4
Assistance in dealing with Utility Providers 3
Information about Hardship Grants 8
Information about Emergency Relief Services 5
Information about where to get financial help 8
Assistance with accessing Superannuation 5
Assistance with Child Care Subsidies or Grants 2

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

Better counselling services 9
More accessible support groups 7
Better information from government agencies 9
Availability of a Care Coordinator 10
Better information about obtaining financial support 8
Disability Parking Information 2
Home Help Information 1
Not Applicable 0
Other * 0

Areas of Family Support Important to You

Being able, if required, to advocate on my behalf 7
Understanding personality changes that may occur 5
Being able to assist me with various tasks 8
Being prepared to take up slack at home 7
Being able to communicate honestly with family and friends 14
Other * 1

INITIAL FAMILY/FRIENDS SUPPORT

My partner or spouse accompanied me to all of my appointments 9
I was on my own 5
A friend accompanied me to most or some of my appointments 2
My late husband attended the initial consultation and then after his passing my two sons accompanied me 1
A friend accompanied me to all of my appointments 1
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 2
Not answered 7

Overall Effect on Family *

It has brought us closer together 9
It has adversely affected our family 2
It hasn’t affected us at all 2
I don’t know 2
Not answered 13

Do you feel isolated from your support? *

NO, I don’t feel isolated 5
YES, I do feel isolated 7
I’m not sure 5
Not answered 12

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 29

Main responses from Family and Friends

Making allowances for changes in behaviour 5
Making allowances for diminished ability to contribute to household 4
Assisting with tasks that otherwise I would complete 4
Being able to communicate honestly with family and friends 6
Recognising that I am not completely recovered 8
Providing financial support 3
I have been alienated from my family 1
Some family members think that I am over-reacting and malingering 6
Some friends think that I am over-reacting and malingering 5
Other * 0