Understanding the Voice of Cancer Caregivers
By Alexandra Zaleta, PhD, Senior Director, Research, Cancer Support Community
At the Cancer Support Community, we have always strived to serve everyone who has been affected by cancer. For us, this means providing support to patients as well as their family members, who often play a critical role in providing support and care. It also means conducting research that prioritizes cancer caregivers in order to understand their greatest needs and to develop better support programs.
One of the two key initiatives of our Research and Training Institute is CancerSupportSource®-Caregivers, a tool that captures caregivers’ concerns and links them, automatically, to the information and support they need most. The program was developed by working closely with cancer caregivers. Our affiliates across the country use CancerSupportSource®, and we continue to grow the program through our research efforts.
Since 2014, we have also been enrolling caregivers into our Cancer Experience Registry, a web-based research survey that allows patients and caregivers to share their experiences and provide insights into the impact of cancer. The Cancer Experience Registry has allowed us to collect valuable information around caregivers’ priorities, needs and experiences when caring for someone with cancer. This project is ongoing, and our goal is to increase knowledge and improve outcomes for caregivers in the cancer community. We encourage caregivers to join at www.CancerExperienceRegistry.org.
In addition to research, Cancer Support Community offers a number of resources that provide support to caregivers and patients, including our toll-free Helpline, our Frankly Speaking About Cancer educational series, the direct services offered to caregivers through our Affiliate network, the MyLifeLine service (which connects cancer patients and caregivers with their family and friends for support), and the Cancer Policy Institute’s Grassroots Network, a place to make your voice heard to local and national policymakers.
Cancer Caregivers Book Highlights Research and Resources
In service of our commitment to caregivers, we are excited to share that we have authored a book chapter in Cancer Caregivers, published by Oxford University Press. The book is dedicated to the science of cancer caregiving and the support that is available to caregivers in their community.
Learn more about our book chapter in Cancer Caregivers here.