National Online Peer Support for People Recovering From Critical Illness and Their Families: A Study Protocol.

Abstract

Background: People surviving critical illness often experience long-lasting impairments of varying severity known as post-intensive care syndrome. These challenges persist well beyond hospital discharge and affect not only patients but also their families. Peer support services, defined as structured interventions where former ICU patients use their lived experience to support each other through shared understanding, are well established in England and several other countries. In Denmark, however, only in-person peer support meetings are offered. Approximately 10% of those invited in Denmark attend these meetings, so low attendance, which may reflect practical barriers or limited knowledge about the concept.

Objective: To co-create, develop, and evaluate a Danish online peer-support service that supports survivors of critical illness and their families in their recovery path.

Methods: A participatory design study will be conducted within a Danish context, using a multi-method approach. Participatory design, grounded in the principles of action research, seeks to create meaningful change in practice through close collaboration between researchers and those directly affected; in this study, survivors of critical illness and their families. The study will be conducted in three iterative phases outlined in three work packages. First, user needs and preferences regarding the content, format, and structure of an online peer support service will be explored through semi-structured interviews with 10 ICU survivors and 10 family members. Second, insights from these interviews will inform a series of co-creation workshops involving 24 invited participants covering ICU survivors, families, and healthcare professionals to collaboratively design and refine the online peer support service. Third, we will evaluate the usability, acceptability, and user experiences of the co-created service.

Conclusion: By evaluating a co-created online peer support service, this study will potentially contribute with a feasible service improving long-term recovery for survivors of critical illness and/or their families.