Cancer burden: Exploring the parallels between cancer hardship and the well-being of cancer caregivers.

Abstract

162 Background: The latest 2016 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Millions of cancer survivors rely on cancer caregivers every day. Cancer caregivers play a vital role throughout the care continuum, and greatly impact a patient’s quality of life. Caring for a cancer patient affects all aspects of a caregiver’s life, including: changes to daily routine, work and family life; financial hardship; and emotional and psychological distress. Our study explores the cancer burden, unmet needs and well-being of cancer caregivers. Methods: Beginning in September 2015-September 2017, our professional facilitator with over 25 years of cancer advocacy experience hosted nationwide caregiver focus groups. Primary goals were reaching caregivers in rural, urban and community oncology settings to gain perspective from diverse populations. We met with cancer caregivers in 32 states via traditional focus group settings and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated in our focus groups. 88% reported high levels of stress and anxiety (I struggle to concentrate & walk around feeling like I was kicked in the stomach); 78% were employed full time with an average of an additional 20+ hours per week devoted to caregiving responsibilities (Pulled in every direction – need balance); 66% reported self-health decline (No time for me – worry I will get sick and then what?) Describing in one word their current feelings, the top three responses were: Exhausted; Lonely; Overwhelmed. Conclusions: The burden of caring for a cancer patient is immense and all-consuming. Our conversations with caregivers will continue as we collaborate with partners, develop meaningful programs, and expand our outreach and resources to help lessen the burdens of cancer on caregivers.