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2024 Bladder Cancer Advocacy Network Caregiver Needs Update Survey

BCAN Cares About Caregivers

If someone you care for has bladder cancer, BCAN knows you are a vital part of their patient care team. What happens at home is just as important as what happens in the doctor's office. BCAN wants to be sure we are here with resources for you and your loved one with bladder cancer. Thank you for taking time to let us know how we can help. 
1.What is your relationship to the person with the bladder cancer diagnosis?
2.Please provide the following information about YOU.
3.Please provide the following information about the person with bladder cancer.
4.Which best describes the diagnosis of the person with bladder cancer?
5.Please check all the treatments/procedures the person with bladder cancer has received.
6.Please indicate the amount of emotional support you provide for the person with bladder cancer.
0 % (none)
100 % (I am their main source of emotional support)
7.Please indicate the amount of physical support/assistance you provide for the person with bladder cancer.
0% (I do not need to physically assist them with activities or tasks)
50% (We work together on physical support/assistance tasks)
100 % (I handle most/all of the physical support/assistance tasks)
8.Please provide a brief summary description of the physical or emotional support/assistance you provide.
9.Please share how often you do the following for your person with bladder cancer:
None/never. (0%)
Sometimes. (25%)
A lot of the time. (50%)
Most of the time (75%)
All the time. (100%)
Accompany him/her to appointments.
Help make medical decisions with them.
Coordinate medical or at-home care.
Handle tasks such as medication management and meals for them.
Perform or assist with medical or nursing tasks at home (i.e. bag/bandage changes, catheter, etc.)
Manage tasks such as medical finances or bills for them.
Provide transportation to medical appointments.
While cancer caregivers are significantly more likely to report having received some sort of preparation for medical/nursing tasks than non-cancer caregivers, still many are doing so without preparation.
10.If you provide any help with medical or nursing tasks (bag/bandage changes, catheter, etc.) how confident or secure do you feel in doing that for your loved one with bladder cancer?
I never help with medical or nursing tasks. 
I am very uncomfortable doing it. 
I am neutral about my confidence or security in doing this. 
I am slightly confident in my ability to help with medical or nursing tasks.
I am very confident or secure in my ability to help with medical or nursing tasks.
11.Please provide comments on your caregiving experience with medical or nursing type tasks to care for your loved one.
12.As a caregiver for a person with bladder cancer, how do you feel about  these BCAN resources?
 I have never seen this resource.
The information was hard to understand.
This information was slightly helpful.
The information was  helpful.
This information was very helpful.
Bladder Cancer Basics handbook
BCAN Tips for Caregivers folder
Survivor to Survivor volunteer call
www.BCAN.org website
BCAN Patient Insight Webinars or Treatment Talk programs (available on BCAN.org)
Get the Facts pages about treatments
Inspire online support community
BCAN's Treatment Matrix (https://bcan.org/treatment-matrix/)
13.Please provide comments or suggestions about any of the resources above from a caregiver perspective.
14.In your opinion, how important are the following topics to caregivers?
Not important 
Slightly important 
Important
Very important 
The financial cost of treatments.
Schedule of treatments for bladder cancer.
The other costs of treatments (travel, time, pet or child care).
The stress or emotional burden of caring for someone with bladder cancer.
Personal fear or concern about my loved one having a bladder cancer recurrence.
Finding time to take care of my personal needs (exercise, nutrition, medical appointments, socializing).
Getting help when I need a break. 
Knowing what to do when the doctors do not have any further treatment options?
15.Please provide suggestions for additional programs or resources that would help you and other caregivers?
Thank you for taking time to share your thoughts on resources for caregivers. 
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