Understanding the extent of caregiver involvement and needs in treatment-impacting activities.

Abstract

187 Background: Caregivers are known to be a significant part of patient care; however, the extent of their role is commonly underestimated and they often feel ‘invisible’. COLONTOWN (CT) is a virtual colorectal cancer community providing peer support and evidence-based education for both caregivers and patients. As such, we sought to understand caregivers’ involvement related to treatment decision making and care delivery, and related gaps in support. Methods: Our online anonymous survey was posted in May 2024 to members of CT’s international caregiver community, who may be more active in their patients’ care than typical of the broader CRC population. It included 33 questions on caregiving responsibilities, effect of cancer on other life activities, impacts, support received/needed and 13 demographic questions. We identified a subset of 9 questions specifically related to treatment that are reported here. Results: All data was self-reported based on their patient’s time in active treatment. Of 359 respondents, 88% were female and 86% significant others/spouses. Their patients were 90% Stage IV and 85% in the US with 17 other countries represented. Caregivers nearly always participate in and often have primary responsibility in treatment-impacting activities (Table). This includes researching treatment options, where among the 69% in a primary role 31% have complete responsibility, managing side effects, and recording and reporting symptoms. 88% were always or usually at appointments and/or otherwise in direct contact with the care providers. Caregivers' roles, however, are not always recognized by their patient’s care team. Only 6% felt completely supported and 21% felt completely respected by their patient’s care team. 66% felt “Enhanced communication and collaboration with healthcare providers” would aid in their role in patient care. 56% indicated “more education resources for caregivers” are needed. Conclusions: Caregivers report assuming primary responsibility in many critical activities in patient treatment. The gap in recognizing this dynamic contributes to the challenges of caregiving. CT embraces the vital role of caregivers by offering dedicated caregiver resources and engaging them as equal partners in development and offering of all programs . Acknowledgement of the depth of the caregiver role is needed and more caregiver support should become a standard component of the patient’s care plan. Any shared decision-making processes and education should appropriately recognize and include caregivers as critical stakeholders as requested by their patient. Caregivers’ reported role in treatment-impacting caregiving activities. Activity Primary Role % Split Evenly % Support Role % No Role % Researching treatment options 69 13 17 1 Researching/managing side effects 64 21 14 1 Symptom reporting 47 24 23 6 Coordinating care 44 27 25 4