"How Do I Test the Waters? How Do I Go Forward?": Codesigning a Supportive Pathway after Critical Illness

Rationale: Long-term recovery after critical illness can be affected by post-intensive care syndrome (PICS), a significant burden, which can impact return to activities and work. There is a need for streamlined support for intensive care unit (ICU) patients in their recovery while enduring PICS symptoms. Objectives: To explore critical illness recovery from the experiences, perspectives, and beliefs of former ICU patients, their caregivers, and multidisciplinary clinicians to design a future rehabilitation intervention prototype to support ICU patients. Methods: This was an experience-based codesign (EBCD) study underpinned by the Behavior Change Wheel framework involving ICU patients (<5 years after illness), caregivers, and multidisciplinary clinicians with current clinical experience with ICU recovery at any point along the care continuum (ICU, acute, subacute, or community settings) from two metropolitan hospitals in Melbourne, Australia. Two rounds of experience-based codesign workshops were held between August 2021 and February 2022. Workshop content was analyzed via a reflective thematic approach to determine themes and develop an intervention. The intervention was mapped according to the template for intervention description and replication framework. Results: Forty people participated in the codesign process: 15 ICU patients, 2 caregivers, and 23 clinicians. Fifteen major themes were identified in the experience of ICU recovery. Returning home was a key time point for change, acceptance, and adjustment, with the burden of physical limitations and mental health problems becoming apparent. Most participants expressed that PICS was poorly understood in the community, and there was a lack of support to aid recovery. Based on these results, an intervention prototype was developed with a primary goal of improving care after hospital discharge. This was further refined in the second round of workshops. A resource toolkit was deemed most acceptable to end-users, including a hospital-directed support program involving psychology and physical therapy and an accompanying digital health package. Conclusions: A critical time point for more support in the recovery journey was the transition from hospital to home. To address this, a rehabilitation prototype including a physical and psychological support intervention and supporting digital health toolkit was codesigned. The intervention package will be developed and trialed with future ICU patients and their families. Clinical trial registered with www.clinicaltrials.gov (NCT05044221).