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. 2024 May 8:11:e53194.
doi: 10.2196/53194.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study

Elizabeth A O'Donnell #  1   2 , Aricca D Van Citters #  2 , Inas S Khayal  2   3 , Matthew M Wilson  4   5 , David Gustafson  6 , Amber E Barnato  2   4   5 , Andrea C Buccellato  3 , Colleen Young  7 , Megan M Holthoff  2 , Eugene Korsunskiy  8 , Stephanie C Tomlin  9 , Amelia M Cullinan  4   5 , Alexandra C Steinbaugh  5 , Jennifer J Hinson  9 , Kristen R Johnson  5 , Andrew Williams  9 , Ruth M Thomson  4   5 , Janet M Haines  9 , Anne B Holmes  9 , Ann D Bradley  9 , Eugene C Nelson  2 , Kathryn B Kirkland  2   4   5
Affiliations

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study

Elizabeth A O'Donnell et al. JMIR Hum Factors. .

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: 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.

Keywords: active care; bereaved care; bereavement; care partners; care provider; care providers; caregiver; caregivers; caregiving; clinician; clinicians; emotional support; engineering design; function; functions; human-centered design; impact; information; mortality; online network; online support network; peer support; privacy protection; quality of life; rural; serious illness; specification; technical support; tertiary care; unmet need; unmet needs; viability; virtual network.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Co-design framework (reproduced from The Dartmouth Institute for Health Policy & Clinical Practice, which is published under Creative Commons Attribution 4.0 International License). HIT: health information technology.
Figure 2
Figure 2
Sketch of a serious illness community network, created by a co-design team member.
See this image and copyright information in PMC

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