背景:家庭护理人员参与肿瘤学并不普遍或系统。
目标:我们实施了流程干预(即,患者-护理人员门户系统)与现有的患者门户系统(1)允许患者指定他们的护理人员和通信偏好与该护理人员,(2)将护理人员连接到特定于护理人员的唯一门户页面,以指示他们的需求,以及(3)向护理团队提供dyad的响应的电子通知,以通知临床医生并根据需要将护理人员与资源联系起来。
方法:我们评估了接受姑息治疗的癌症患者对这种患者-看护者门户系统的可用性和满意度,他们的照顾者,和临床医生。
结果:在31个同意的患者-护理人员中,20名患者和19名护理人员登录。Further,60%(n=12)的患者表示倾向于与护理人员平等或一起交流。看护者报告情绪较高(n=9,47.3%),财务(n=6,31.6%),和物理(n=6,31.6%)护理相关菌株。护理团队以电子方式收到了所有患者-护理人员的回复。大多数患者(86.6%,完成用户体验访谈的13/15人)和护理人员(94%,16/17完成了用户体验访谈)对系统感到满意,while,在参与的6名临床医生中,66.7%的人同意“相当多”(n=1,16.7%)或“非常多”(n=3,50%),该系统允许他们提供更好的护理。
结论:我们的发现证明了系统的可用性,包括一种系统的方法来确定护理人员的需求,并以患者和护理人员可以接受的方式与护理团队分享,并被临床医生认为受益于临床护理。患者-护理人员门户系统的集成可以是用于系统地参与护理人员的有效方法。这些发现强调了需要在晚期癌症或不同疾病患者的护理人员中进行额外的研究。
The engagement of family caregivers in oncology is not universal or systematic.
We implemented a process intervention (ie, patient-caregiver portal system) with an existing patient portal system to (1) allow a patient to specify their caregiver and communication preferences with that caregiver, (2) connect the caregiver to a unique caregiver-specific portal page to indicate their needs, and (3) provide an electronic notification of the dyad\'s responses to the care team to inform clinicians and connect the caregiver to resources as needed.
We assessed usability and satisfaction with this patient-caregiver portal system among patients with cancer receiving palliative care, their caregivers, and clinicians.
Of 31 consented patient-caregiver dyads, 20 patients and 19 caregivers logged in. Further, 60% (n=12) of patients indicated a preference to communicate equally or together with their caregiver. Caregivers reported high emotional (n=9, 47.3%), financial (n=6, 31.6%), and physical (n=6, 31.6%) caregiving-related strain. The care team received all patient-caregiver responses electronically. Most patients (86.6%, 13/15 who completed the user experience interview) and caregivers (94%, 16/17 who completed the user experience interview) were satisfied with the system, while, of the 6 participating clinicians, 66.7% agreed \"quite a bit\" (n=1, 16.7%) or \"very much\" (n=3, 50%) that the system allowed them to provide better care.
Our findings demonstrate system usability, including a systematic way to identify caregiver needs and share with the care team in a way that is acceptable to patients and caregivers and perceived by clinicians to benefit clinical care. Integration of a patient-caregiver portal system may be an effective approach for systematically engaging caregivers. These findings highlight the need for additional research among caregivers of patients with less advanced cancer or with different illnesses.