KEEP A BREAST Survey- Caregiver

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Keep A Breast (KAB) aspires to create a wellness center for those battling breast cancer and their families. When you take this survey, you help guide the priorities and needs the center should focus on.

Thank you for taking the time to help make a difference for those affected by breast cancer. We greatly appreciate your willingness to share part of your journey with us.

All responses are anonymous.

Where are you in the breast cancer journey? *

My loved one was recently diagnosed(less than 3 months)

3 – 6 months since my loved one was diagnosed

7 months – almost 1 year since my loved one was diagnosed

1- 5 years since my loved one was diagnosed

6-10 years since my loved one was diagnose

11+ since my loved one was diagnosed

Below is a list of thoughts, emotions and concerns that may have been running through your head and your heart at the time of diagnosis for your loved one. We would appreciate it if you would take a moment to identify the top 5 that most impacted you.
*

Anger or frustration

Optimism regarding treatment options available to my loved one

Fear

Thankful my loved one’s cancer was found and treatable

Possible long term side effects or disability of my loved one

Concerns over my ability to care for my loved one long term

Uncertainty for the future

The disease’s impact on our relationship or our family

Concerns over future quality of life for my loved one or myself

Concerns about finances

Helplessness

Exhaustion or feeling drained

Anxiety

Lack of control

My loved one losing their breasts or experiencing some disfigurement

Sadness

Concerns about navigating a complex healthcare system

Other:

Required

At the time your loved one was diagnosed, had you heard the terms “co-survivor” or “caregiver” before?
*

Yes to caregiver only

Yes to co-survivor only

Yes to both caregiver and co-survivor

No I had not heard these of terms before the diagnosis

After your loved one was diagnosed with breast cancer, did you receive any of the following information or support resources to help guide you in the role as a caregiver?

Check all that apply.

Caregiver specific handouts listing mental health resources, support groups or meet-ups

General handouts listing breast cancer websites (not specific to caregiver role)

Verbal information about online breast cancer support groups for patients

Verbal information specific to caregiver/co-survivor online support groups

Told about local meet-ups for individuals with breast cancer

Told about local meet-ups for caregivers to someone with breast cancer

Referral specific to a mental health provider or resources

Verbal suggestion to consider mental health provider or resource for self

No caregiver specific information or support group resources provided

I sought out my own caregiver specific information and/or resources

Other:

Required

How strongly would you agree with the following statement?

At the time my loved one was diagnosed, the resources provided to me taught or improved the necessary support skills I used as the caregiver/co-survivor.

Strongly Disagree

Strongly Agree

How strongly would you agree with the following statement?

When my loved one was diagnosed, it was easy for me to find resources and support groups specific to my needs and preparation as the caregiver/co-survivor.

Strongly Disagree

Strongly Agree

How strongly would you agree with the following statement?

Since the diagnosis of your loved one, would you agree overall that as the caregiver/co-survivor, you needed more resources and support for yourself?

Strongly Disagree

Strongly Agree

Given where you are currently on the breast cancer journey alongside your loved one, what statement below best captures how well your needs for resources and support as the caregiver are being met now?
*

Yes my needs are being met

Mostly my needs are being met

Half of my needs are being met

Very few of my needs are being met

No my needs are not being met

I rather not or don't think about my needs right now

Other:

Required

Using your experience, help us better identify areas of need for caregivers specifically. From the list below, check the top 5 caregiver needs or wants that you wish had been available or supported more.

Mental health support

Better communication techniques to use with family especially youths

Managing the financial aspects while caring for a loved one with cancer

A caregiver support group designed by and for caregivers to help guide/ inform

Addressing stigmas or caregiver role expectations outside of the home

Information and discussion about sexual health and intimacy during cancer treatment

Searchable caregiver topics/experiences like blogs and videos from trusted source

Guidance for setting up a support network of friends and family to lean on

The importance of caregiver self-care such as regular exercise or time with friends

Guidance on support needs and when/how to prepare ahead of time

Organization techniques to track appointments, medication, paperwork, insurance docs etc.

Stress management

Other:

Using your experience, help us better identify areas of support that a caregiver provides to their loved one that you wish had more information or resources to help guide future caregivers.

Check your top 3.

Effective ways to ask for help and support from others

How to prepare for and manage pre and post operative care

How to better advocate for your loved one

Nutrition and diet information designed for cancer patients

Care options to alleviate some side effects of standard treatment/medications such as swelling, nausea, or insomnia

How to prepare for and manage chemotherapy

Communication techniques for friends, family, work, neighbors etc

More information about and resources for alternative or complementary care

Effective ways to manage the moving parts (appointments, medications, paperwork etc)

Financial planning advice for both immediate and future scenarios

Tools/ activities designed to lift spirits or foster creativity, not just treat the disease

Other:

In your opinion, what was the most difficult period for you as the caregiver/co-survivor during this challenging health situation?

The time period around the initial diagnosis

The time period around/during treatments and/or surgeries

The time period after treatments/surgeries

Recovery/No evidence of disease(NED)or Remission

All the above were equally difficult

Other:

Clear selection

Select your level of agreement with this statement.

At the time of my loved one’s breast cancer diagnosis, I would have benefitted from a 2-4 day retreat that included both myself and my immediate family to come together to process our emotions and learn some tools to make the journey ahead easier and more supportive for us all.

Strongly Disagree

Strongly Agree

Clear selection

Submit

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