A qualitative study of the home-based time burdens faced by persons affected by GI cancer.
Authors: Sekar Preethiya , Johnson Whitney Victoria , George Manju , Breininger Allison , Parsons Helen M. , Vogel Rachel I. , Blaes Anne Hudson , Gupta Arjun 
Published: January 2025

822

Background:
As cancer care is increasingly delivered at home, more tasks and responsibilities fall on patients and informal care partners. This is especially relevant for people with GI cancer who often have specific home-based care needs such as feeding, ostomy care, 5-fluorouracil chemotherapy, and complex medication management. Home-based time costs are undercounted in current measures of time toxicity that only include care received in formal healthcare settings.
Methods:
We conducted semi-structured interviews with patients with GI cancer and their care partners at a single tertiary cancer center in MN, USA from March-Oct 2023. Interviews explored cancer care tasks at home, associated time burdens, and how they compare to in-facility care. We analyzed interview transcripts using a grounded theory approach to identify themes.
Results:
We included 33 individuals (11 aged >60y, 21 female, 25 white) including 15 patients (8 colorectal cancer, 8 ECOG 0) and 18 care partners (15 lived with the patient, 7 working at least part-time). We identified 5 themes (Table).
Conclusions:
This foundational work characterizes time burdens of home-based cancer care for persons affected by GI cancer. In addition to providing the first input on incorporating home-based time burdens into objective measures of time toxicity, we highlight the complexity of assessing time burden which is context and role-dependent.

Theme
Subtheme
Quote

Unexpected home-based care is time burdensome
Challenge with home as a site of healthcare, difficult transition from hospital to home
‘’What they would do at the clinic behind the scenes she was doing on my kitchen table.” (Patient)

Other burdens compound time burdens
Logistic/administrative, emotional, symptom
“The time spent on administrative things and coordinating [...] are more stressful than going to the clinic.” (Patient)

Time burdens evolve over the disease course and differentially impact patients and care partners
Cancer care constantly changes, discomfort with some tasks at home, less support provided if more competent, home-based care allows for connection
“They’re in a season of remission and [...] we want to live as normal a life as we can. And then there are other seasons where it’s the absolute opposite.” (Care partner)

Factors influencing the choice of home-based care
Need to manage family duties, supportive care partners matter, value connection with nurses, decreased travel
“There is a different cost when you start doing things at home, especially when you have small children because if they’re witnessing it, that’s emotional.” (Patient)

Home-based care is generally perceived as less time-burdensome than similar cares provided in-facility
Different opinions on whether home-based care should be included in time toxicity measure
“If you’re just talking about video visits I wouldn't consider that time toxic. But if I’m going [to the clinic], I’ve pretty much lost the whole day.” (Patient)