Sekar Preethiya, Johnson Whitney V, George Manju, Breininger Allison, Parsons Helen M, Vogel Rachel I, Blaes Anne H, Gupta Arjun
Division of Hematology, Oncology, and Transplantation, University of Minnesota, 516 Delaware Street SE, MMC 480, PWB 14-100, Minneapolis, MN, 55455, USA.
Paltown Development Foundation/COLONTOWN, Crownsville, MD, USA.
Support Care Cancer. 2025 Jan 27;33(2):80. doi: 10.1007/s00520-024-09132-8.
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.
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.
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.
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.
随着癌症护理越来越多地在家庭中进行，患者及其非正式护理伙伴承担了更多的任务和责任。这些时间成本可能会带来巨大的心理、身体和经济负担，并且在当前仅考虑在正规医疗机构接受护理的时间毒性测量中被低估。
2023年3月至10月期间，在一家三级癌症中心对胃肠道癌患者及其非正式护理伙伴进行了半结构化定性访谈。访谈探讨了在家中进行的癌症护理任务、相关的时间负担、这些时间负担与机构护理相比如何，以及在家护理是否应纳入时间毒性的客观测量中。两名编码员转录访谈内容并使用扎根理论方法分析数据。
一名访谈者对15名患者和18名护理伙伴进行了半结构化访谈，并确定了五个主要主题：（1）意外的家庭护理活动耗时费力；（2）其他负担与时间负担相互作用并产生影响；（3）时间负担在疾病过程中演变，对患者和护理伙伴的影响不同；（4）几个因素影响家庭护理与机构护理的选择；（5）总体而言，家庭护理通常被认为比机构护理耗时更少。总体而言，33名参与者中有12名（36%）建议将家庭护理天数纳入当前接触天数的时间毒性测量中。
除了描述与家庭癌症护理相关的时间负担外，本研究还基于现有文献探讨是否以及如何将家庭护理天数纳入接触天数测量中。
