Accepted for/Published in: JMIR Human Factors
Date Submitted: Oct 17, 2023
Date Accepted: Mar 20, 2024
By the people, for the people: Design of an online peer support network to help care partners of people with serious illness
ABSTRACT
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:
Our objective was to design and prototype a regional, facilitated, online 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 stakeholders, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications for a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the online 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 as well as a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare online 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 illness 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.
Citation
Per the author's request the PDF is not available.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.