Caregiver Burden: Empowering Caregivers with Shared Decision-Making Strategies and Skills to Improve Patient Quality of Life and Outcomes

Abstract

Background: Data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER 2016) program estimates there are 15.5 million cancer survivors in the United States who rely on cancer caregivers every day. Caregivers play an essential role throughout the care continuum, greatly impacting a patient’s quality of survivorship.

Methods: From August 2019 to March 2020 the Raymond Foundation hosted nationwide caregiver focus groups and an online survey. Primary goals were reaching caregivers and the patients they serve in rural, urban, and community oncology settings to gain perspective from diverse populations. Focus groups were held in person and online via video conferencing.

Results: 1,012 caregivers and the patients they care for (41% male, 59% female) participated: 92% reported a lack of educational resources necessary to participate in shared decision-making regarding treatment protocol; 90% reported they lacked communication strategies required to effectively communicate with their healthcare team; 87% reported they would like to learn more about clinical trials but did not know where to start; 85% reported they did not feel comfortable reporting treatment adverse effects; 94% reported that working toward a patient-centered, advocate-based care approach would lead to enhanced quality of life and improved outcomes.

Conclusions: Cancer caregivers and the patients they assist understand the importance of shared decision-making and patient-centered care. Based on these focus groups and survey findings, the call to action includes developing the Cancer Caregiver Advocacy Plan — an educational resource to address educational gaps and empower caregivers to become informed healthcare advocates.