Communications, Marketing and Community Health, Alice Peck Day Memorial Hospital, Lebanon, NH, United States.
The Dartmouth Institute for Health Policy & Clinical Practice, Geisel School of Medicine at Dartmouth, Lebanon, NH, United States.
JMIR Hum Factors. 2024 May 8;11:e53194. doi: 10.2196/53194.
Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available.
This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement.
An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network.
The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period.
A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.
在患者治疗期间及其去世后，重病患者的护理人员会面临重大挑战和未满足的需求。从具有相似经历的人身上学习可能会很有价值，但机会并不总是存在。
本研究旨在设计和制作一个区域性、有引导的、基于网络的同行支持网络，帮助重病患者的活跃护理人员和丧亲护理人员更好地准备应对重病期间和丧亲期间出现的意外情况。
一个由 18 名成员组成的共同设计团队包括活跃的护理人员和丧亲的护理人员、经历过重病的人、区域内的医疗保健和支持伙伴以及临床医生。该团队由指导者和同行网络主题专家指导。我们进行了设计练习，以确定同行支持网络的功能和规格。共同设计成员独立对网络规格进行了优先级排序，这些规格被纳入了基于网络的早期迭代版本中。
团队优先考虑了两个功能：（1）将护理人员与信息联系起来；（2）促进情感支持。设计过程产生了 24 个潜在的网络规格来支持这些功能。优先级最高的包括提供一个支持和尊重的社区；将人们与可信赖的资源联系起来；减少寻求帮助的障碍；以及提供常见问题解答和回复。网络平台必须简单直观，为用户提供技术支持，保护成员隐私，提供公开信息和私人讨论论坛，并易于访问。在 3 个月的时间内，通过 ConnectShareCare 网络招募成员是可行的。
共同设计过程支持确定农村地区重病患者护理人员同行支持网络的关键特征，以及初步测试和使用。正在进行进一步的测试，以评估网络的长期可行性和影响。
