Caring for Colorectal Cancer Patients: the Perspective of Informal Caregivers in Brazil

Introduction: In Brazil, it is estimated that 55,102 individuals were newly diagnosed with colorectal cancer in 2020. It is the third most common cancer among men and women, with an estimated 25.9 new cases per 100,000 people. Little is known about the impact of caring for a cancer patient on informal caregivers in Brazil, where often family members are expected to fulfill the role of primary caregiver without additional support or resources. Objective: To investigate the impact of caring for a colorectal cancer patient on informal caregivers in Brazil. Methods: From September to November 2020, Oncoguia, a cancer patient advocacy organization in Brazil, conducted a cross-sectional study using an online survey that was distributed to Oncoguia’s institutional and social networks. Results: A total of 55 responses were included in the analysis. Respondents self-identified as caregivers of colorectal cancer patients and represented 11 of 26 states. A majority (82%) were female with an average age of 43 and most were children (44%) or the spouse/partner (33%) of the patient. Respondents were mainly responsible for accompanying the patient to medical appointments (65%) and treatment (60%), managing medications (40%), and meals (38%). These caregiver responsibilities varied based on the phase of the cancer journey, with some continuing even after the patient showed no evidence of disease. Only 6% of respondents received some type of training or guidance as to how to care for the patient. Respondents indicated diagnosis as the most difficult phase (41%), followed by treatment (33%), and described their common sentiments as feeling tired (33%), insecure (30%), and overloaded (25%). Impacts on the respondent’s life, health, and self-care were also captured, with many reporting a change in their personal plans (71%), sleep problems (63%), and lack of time to manage their own personal issues since becoming a caregiver (57%). Conclusion: Our study analyzed the impact of caring for colorectal patients from the perspective of the informal caregiver and found that informal caregivers are often familial who assume many responsibilities, yet receive very little guidance about how to care for their family member living with colorectal cancer. The caregivers experience emotional and physical hardships, which affects their lives in different ways. Understanding the informal caregivers’ perspectives and needs is critical to developing adequate information and support for this often unrecognized group.