Colorectal cancer caregivers demonstrate need for a one-stop comprehensive resource.

Abstract

74 Background: Patients with colorectal cancer often require a caregiver’s assistance with daily activities, medical care, social needs, and navigating treatment options. In providing this assistance, caregivers may be at an increased risk for psychological distress. Direct support to manage a caregiver’s stress and maintain their well-being is essential. More research is needed to fully understand the challenges caregivers face and to provide solutions. Previous studies have found that caregivers experience high levels of depression and anxiety, and many lack access to resources despite the evidenced need for support. Methods: A survey was disseminated via the Colorectal Cancer Alliance’s Blue Hope Nation community for two weeks and by email. Forty caregivers of colorectal cancer patients of varying stages and diverse demographic backgrounds completed the survey. Results: Half of the respondents have been providing care for 1-3 years, and 63% indicated they were a patient’s spouse or partner. Most caregivers were in the 35-40 age group, and 30% were full-time caregivers. A majority reported experiencing anxiety/stress (97.5%), fatigue (80%), poor sleep (77.5%), depression (75%), and feelings of isolation (72.5%). Primary caregiver activities included providing moral support, completing household chores, and researching treatment options. Only 32.5% of caregivers received help or advice from their patient’s doctors or medical team on the tasks listed. The survey results suggest the need for a comprehensive resource with information on medications, side effects and treatments; a guide for medical discussions; organization for medical forms and documents; and a tool to connect with peer caregivers. Conclusions: Survey themes indicate that caregivers often feel unprepared to provide care, have inadequate knowledge, and receive little guidance from health care providers, so there is continued need to place both the patient and caregiver at the center of care. A comprehensive centralized resource given at diagnosis with vital information and a method for document organization would help reduce caregivers’ stress and allow them to share information easily. Such patient and caregiver-directed resources would enable a better quality of care experience, and potentially better mental health outcomes, for patients and their caregivers.