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

Area of Science:

• Health Informatics
• Patient Support Systems
• Digital Health

Background:

• Care partners face significant challenges and unmet needs during serious illness and bereavement.
• Existing opportunities for peer support are inconsistent and often unavailable.
• Shared experiences can provide valuable coping mechanisms for care partners.

Purpose of the Study:

• To design and prototype a regional, facilitated, web-based peer support network.
• To assist active and bereaved care partners in coping with serious illness and bereavement.
• To improve preparedness for challenges faced by care partners.

Main Methods:

• A co-design team of 18 members, including care partners, patients, and clinicians, was assembled.
• Design exercises identified essential functions and specifications for the peer support network.
• Co-design members prioritized network features, informing an early iteration of the web-based platform.

Main Results:

• The network design prioritized connecting care partners to information and facilitating emotional support.
• Key features included a supportive community, trusted resources, reduced barriers to help-seeking, and FAQs.
• The platform design emphasized simplicity, user support, privacy, accessibility, and a mix of public and private information.

Conclusions:

• Co-design effectively identified critical features for a rural peer support network for serious illness care partners.
• Initial testing and use of the ConnectShareCare network were feasible.
• Further research is ongoing to evaluate the network's long-term viability and impact.