背景:患有严重疾病的患者的护理伙伴在患者的治疗期间和死亡后经历重大挑战和未满足的需求。向他人学习,分享经验可能是有价值的,但是机会并不总是可用的。
目的:本研究旨在设计和原型,促进,和基于网络的同伴支持网络,以帮助患有严重疾病的人的活跃和失去亲人的护理伙伴更好地准备应对严重疾病和丧亲期间出现的意外。
方法:由18人组成的共同设计团队包括积极的护理伙伴和丧亲者,经历过严重疾病的人,区域卫生保健和支持伙伴,和临床医生。它由主持人和同行网络主题专家指导。我们进行了设计练习,以确定对等支持网络的功能和规范。共同设计成员独立确定网络规范的优先级,它们被纳入基于Web的网络的早期迭代中。
结果:团队优先考虑了两个功能:(1)将护理伙伴与信息联系起来;(2)促进情感支持。设计过程生成了24个潜在的网络规范来支持这些功能。最高优先事项包括提供支持和尊重的社区;将人们与可信赖的资源联系起来;减少寻求帮助的障碍;并提供常见问题和回应。网络平台必须简单直观,为用户提供技术支持,保护会员隐私,提供公开信息和私人讨论论坛,并且易于访问。在3个月的时间内,在基于ConnectShareCare的网络中注册会员是可行的。
结论:共同设计过程支持为农村地区严重疾病患者的护理伙伴确定同伴支持网络的关键特征,以及初始测试和使用。正在进行进一步的测试,以评估网络的长期可行性和影响。
BACKGROUND: 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.
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.