Designing a Peer-to-Peer Facilitated Support Network for Active and Bereaved Care Partners of People with Serious Illness: A Multi-Stakeholder Co-Design Project (QI721)

Abstract

1.Describe an effective approach to identifying and collaborating with multiple stakeholders in the co-design of a community peer-to-peer support network.2.Identify most important features of a support network for care partners in the serious illness community. Peer-to-peer facilitated support networks can provide a forum for partnerships with people with shared serious illness experiences. Partnerships may include exchange of information, resources, and psychosocial support. To co-design an online support network to help persons providing care or support to an adult with a serious illness to help them be better prepared to cope with surprises that arise post diagnosis and/or in bereavement. A twenty-member multi-stakeholder team—including caregivers, community members, clinical team members, and facilitators—met biweekly for eight months and monthly for six additional months to identify the top priorities, functions, and vendor platform for an ideal support network. We employed user-centered design methods to identify the need, determine the context, co-design, and test support network prototypes. We gathered information through interviews, focus groups, caregiver surveys, and an environmental scan of existing networks. The team prioritized two network functions: (1) connecting care partners to information and (2) facilitating emotional support. The co-design process generated and prioritized 23 potential network features. The highest priority features included providing a supportive and respectful space; incorporating and helping facilitate one-to-one connections; providing connections to trusted and curated local, national, and international resources; reducing difficulty of asking for help by normalizing needing help; providing frequently asked questions lists; identifying most common needs of care partners; and moderation by local or regional expert facilitators. Additional critical requirements included an intuitive user interface, data ownership, and security. It is feasible to engage a multi-stakeholder team to collaboratively identify and prioritize elements in the development of an online peer-to-peer facilitated support network for care partners of people with serious illness. Testing the network’s feasibility and impact is needed to determine usability; impact on care partner empowerment, distress, and isolation; and gaps in unmet information needs.