Caregiver needs during transition from acute cancer: Findings from focus group discussions with cancer survivors and caregivers.

Abstract

84 Background: The Institute of Medicine recommends that all cancer patients receive a survivorship care plan to help alleviate challenges faced when transitioning from acute treatment to long-term survivorship. As nearly three million Americans act as caregivers for a loved one with cancer, it is important that the survivorship care planning process consider the needs of not only the survivor, but also caregivers. Methods: In preparation for a randomized controlled trial of survivorship care planning, we conducted four focus groups with adult survivors of breast, prostate, and colorectal cancer (n = 28) and two with self-identified caregivers of people who had been treated for these three cancers (n = 20). Focus group participants were recruited from a large, urban academic medical center and a rural community cancer center. Discussions focused on needs and expectations during the transition from cancer treatment to survivorship. Each discussion was recorded, transcribed, and analyzed qualitatively. Data analysis also included review of findings by an advisory board of patients and caregivers. Results: Six themes emerged, some raised by both survivors and caregivers, and some only by caregivers. The need for information on side effects and follow-up care recommendations, confusion regarding the role each provider plays once treatment is complete, and the need for resources and support to help deal with issues such as physical and emotional distress and living a healthy lifestyle were brought up by both caregivers and survivors. In addition, caregivers discussed uncertainty about their role as a caregiver, their own mental and emotional health needs, and the idea that adjusting to ‘a new normal’ is not just for the patient, but also caregivers. Conclusions: Caregivers have distinct needs in addition to those of the patient. These caregiver concerns may need to be addressed during the survivorship care planning process. Based on these findings, we are including a caregiver-specific resource in our survivorship care planning randomized controlled trial.