“The biggest challenge is there’s never a routine”: a qualitative study of the time burdens of cancer care at home

Purpose: As cancer care is increasingly delivered in the home, more tasks and responsibilities fall on patients and their informal care partners. These time costs can present significant mental, physical, and financial burdens, and are undercounted in current measures of time toxicity that only consider care received in formal healthcare settings. Methods: Semi-structured qualitative interviews were conducted with patients with gastrointestinal cancer and informal care partners at a single tertiary cancer center between March and October 2023. Interviews explored cancer care tasks conducted when home, associated time burdens, how these time burdens compared to facility-based care, and whether home-based care should be included in objective measures of time toxicity. Two coders transcribed interviews and analyzed data using a grounded theory approach. Results: A single interviewer conducted semi-structured interviews with 15 patients and 18 care partners, and identified five major themes: (1) unexpected home-based care activities are time burdensome; (2) other burdens interact with and impact time burdens; (3) time burdens evolve over the disease course and differentially impact patients and care partners; (4) several factors influence the choice of home-based versus in-facility care; and (5) home-based care is generally perceived as less time-burdensome than in-facility care. Overall, 12 of 33 (36%) participants recommended including days with home-based care in the current contact days measure of time toxicity. Conclusion: In addition to characterizing time burdens associated with home-based cancer care, this study builds on existing literature to explore if and how to incorporate days with home-based care into the contact days measure.