'How Do I Test the Waters? How Do I Go Forward?': Co-designing a Supportive Pathway after Critical Illness

Ann Am Thorac Soc. 2024 Feb 8. doi: 10.1513/AnnalsATS.202307-599OC. Online ahead of print.

Abstract

Rationale: Long-term recovery following critical illness can be affected by Post-intensive Care Syndrome (PICS), a significant burden which can impact return to activities and work. There is need for streamlined support for Intensive Care Unit (ICU) patients in their recovery whilst 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 pathway to support ICU patients. Methods: An experience-based co-design (EBCD) study underpinned by the Behaviour Change Wheel (BCW) framework involving ICU patients (<five years post 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 EBCD workshops were held between August 2021 to February 2022. Workshop content was analysed 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 (TIDieR) framework. NCT05044221. Results: Forty people participated in the co-design process: fifteen ICU patients, two caregivers and twenty-three clinicians. Fifteen major themes were identified on the experience of ICU recovery. Returning home was a key timepoint 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 supports 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 timepoint 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 co-designed. The intervention package will be developed and trialled with future ICU patients and their families.