ArticleJMIR human factors2024
A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.
Article in JMIR human factors, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Communication about incurable illness and remaining life between spouses and patients with incurable illness receiving specialized home care: effects of a family caregiver-targeted web-based psycho-educational intervention.BMC palliative care · 2024Trial
- The Information Needs and Experiences of Cardiac Implantable Electronic Device Caregivers: A Qualitative Analysis of Social Media Data.Journal of clinical psychology in medical settings · 2026Article
- Frailty Nexus: Community of practice for frailty researchers and healthcare professionals.The Journal of frailty & aging · 2025Article
- Feasibility and Usability of a Web-Based Peer Support Network for Care Partners of People With Serious Illness (ConnectShareCare): Observational Study.JMIR formative research · 2025Observational
- Online support groups for family caregivers: A qualitative exploration of social support and engagement.British journal of health psychology · 2025Article
- Insights From Art Therapists on Using AI-Generated Art in Art Therapy: Mixed Methods Study.JMIR formative research · 2024Article
Corrections and comments
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Authors and funding
22 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCare 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.
objectiveThis 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.
methodsAn 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.
resultsThe 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.
conclusionsA 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.
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