Lambert Sylvie, Loban Katya, Gignac Anne-Sophie, Magalhaes Mona, Brahim Lydia Ould, Chehayeb Sarah, Wasserman Sydney
Ingram School of Nursing, McGill University, Montreal, QC, Canada.
St. Mary's Research Centre, Montreal, QC, Canada.
Palliat Support Care. 2024 Oct;22(5):1056-1064. doi: 10.1017/S147895152400035X.
To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program.
Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people with cancer between 2020 and 2021. Interview questions focused on acceptability of FRO screening, types of FROs, timing/frequency of screening, preferred resources following screening, and communication of FROs to patients and clinicians. Participants were recruited in Canada. Interviews were audio-recorded, transcribed verbatim, and analyzed using thematic analysis and constant comparison.
Almost all caregivers welcomed FRO screening in usual care and viewed it as an avenue toward obtaining more resources. Other potential benefits of FRO screening included increased self-reflection and role acknowledgment. Caregivers prioritized screening for emotional symptoms, and most preferred that the results be shared with the patient's treating team rather than their primary care provider. Caregivers did not want results to be shared with patients, instead favoring learning how best to discuss results with patients. Many spoke of a "one stop shop" containing all relevant information on caring for the patient (first) and for themselves (second). Opinions regarding timing and frequency of FRO screening differed. Periodic administration of FRO measures, with each one not exceeding 20 minutes, was deemed appropriate.
This study extends the concept of patient-reported outcome measures to caregivers, and findings can be used to guide the development of FRO screening programs.
探讨在癌症照护者（为癌症患者提供支持的 unpaid 家庭成员或朋友）中筛查家庭报告结局（FROs）的可接受性，并从他们的角度确定 FRO 筛查项目的关键组成部分。
采用定性描述性设计，在 2020 年至 2021 年期间对 23 名癌症患者的成年照护者进行了半结构化访谈。访谈问题集中在 FRO 筛查的可接受性、FRO 的类型、筛查的时间/频率、筛查后首选的资源以及 FRO 向患者和临床医生的传达。参与者在加拿大招募。访谈进行了录音，逐字转录，并使用主题分析和持续比较进行分析。
几乎所有照护者都欢迎在常规护理中进行 FRO 筛查，并将其视为获得更多资源的途径。FRO 筛查的其他潜在好处包括增强自我反思和角色认可。照护者将情绪症状筛查放在首位，并且大多数人更希望将结果与患者的治疗团队分享，而不是与他们的初级保健提供者分享。照护者不希望将结果与患者分享，而是倾向于了解如何最好地与患者讨论结果。许多人谈到了一个“一站式商店”，其中包含关于（首先）照顾患者和（其次）照顾自己的所有相关信息。关于 FRO 筛查的时间和频率的意见各不相同。定期进行 FRO 测量，每次不超过 20 分钟，被认为是合适的。
本研究将患者报告结局测量的概念扩展到照护者，研究结果可用于指导 FRO 筛查项目的开发。
