At the Cancer Support Community, we have always strived to serve everyone who has been impacted 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.
In service of this commitment to caregivers, we are excited to share that we have authored a book chapter on caregiving published by Oxford University Press. The chapter is included in a new book, entitled ‘Cancer Caregivers,’ that is dedicated to the science of cancer caregiving and the support that is available to caregivers in their community.
Our chapter highlights key caregiver research that we conduct at our Research and Training Institute. First, we describe CancerSupportSource®- Caregivers, a tool that captures caregivers’ concerns and links them, automatically, to the information and support they need most. This program was developed by working closely with cancer caregivers. Our affiliates across the country use CancerSupportSource®, and we are continuing to grow this program through our research efforts.
Also featured is 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. Part of the Cancer Experience Registry is dedicated solely to caregivers, which 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. If you would like to participate in the Cancer Experience Registry, you can join at www.CancerExperienceRegistry.org.
In addition to research, our chapter highlights other key 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 caregiver 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.
We’re proud of the work we have done to bring caregivers to the forefront of the cancer conversation, and are excited to extend our work into 2019 and beyond!
Read more about our book chapter in ‘Cancer Caregivers’ here.
To learn more about cancer caregiver research, email us at research at cancersupportcommunity dot org.
- Symptom Burden, Relationships, and Health Care Communication: Considerations for Lung Cancer Survivorship
- Cancer Caregiver Concerns of Patients' Diet and Weight Management: Practical and Psychosocial Concerns
- Patient Concerns and Quality of Life: First Findings from the Cancer Experience Registry®: Ovarian Cancer
- Psychosocial Distress and Access to Resources: Preliminary Findings from Immunotherapy & Me
- Masculinity and Perceived Control: How Quality of Life Concerns Affect Psychosocial Distress for Prostate Cancer Patients