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Tuesday, December 3, 2019

The Cancer Support Community (CSC) strives to transform the lives of individuals whose lives have been impacted by cancer. This includes caregivers who support patients at each stage of the cancer experience from diagnosis to post-treatment. One way for CSC to understand more about the needs of caregivers is to ask caregivers to share their unique stories through the Cancer Experience Registry® (CER), an online research initiative that seeks to further understand the wide-reaching impact of cancer. Patients and caregivers can relay how cancer has affected aspects of their life financially, socially, emotionally, medically, and more. The information the Research and Training Institute (RTI) collects and analyzes through the CER is then used to inform the development of tools to help caregivers, as well as programming that is delivered through the Cancer Support Community’s nationwide network of affiliates.

As seen in the chart below, CSC’s registry report shows insights on what caregivers most desire:

With these learnings, the Cancer Support Community expanded MyLifeLine— a digital community resource created for patients, friends, and family to give and receive in social, emotional, and practical support.

“The Cancer Experience Registry drives the evolution of programming like MyLifeLine, and other resources including Kids Support and Frankly Speaking about Cancer delivered in person at our affiliate locations. As a caregiver, it was impossible to be everywhere at once, whether it was driving to medical appointments, taking care of our children, or making sure that everyone felt emotionally supported. MyLifeLine stands out to me because it provided a one stop location to have our community know what we needed and when. It also was a resource for me to get educational materials and an online support group. Knowing I am able to support research that enables this to evolve is very fulfilling.”

-- Heather Badt, both a caregiver to her husband and cancer survivor herself

In addition to valuable insights learned from the Cancer Experience Registry to inform programming, the information that caregivers provide also support the development of the RTI’s CancerSupportSource (CSS) - Caregiver, a distress screening and online resource referral tool just for caregivers. CSS- Caregiver aims to identify gaps in support for the caregiver and refer them to the resources that they need most. When caregiver burdens are relieved, they are able to better support loved ones throughout their cancer experience.

We recommend 3 essential resources for caregivers:

In-person support groups through our affiliate network: https://www.cancersupportcommunity.org/FindLocation

MyLifeLine for online support from patients, caregivers, friends and family

Call our Helpline to get personalized assistance: 1-888-793-9355

If you are a caregiver to someone with cancer, we want to hear from you! Please share your unique caregiving story today by visiting https://www.cancerexperienceregistry.org

Category: Caregiving

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