Using Patients,’ Relatives’ And Clinicians’ Experiences To Improve Follow Up Services And Recovery After Critical Care: An Experience-Based Co-Design Study

Abstract

Background
Following an episode of critical illness, two thirds of critical care unit (CrCU) survivors experience significant problems with physical functioning, mental health, social issues and returning to work. There is limited understanding and evidence to guide how services can effectively support patients and families during a prolonged recovery. This study aimed to identify and prioritise service improvements for patients who have survived an episode of critical illness.
Methodology and Methods
Using Experience-based Co-design (EBCD) methodology this study explored the experiences of former CrCU patients, their family members and the staff who delivered CrCU follow up services at a large teaching hospital in the Northwest of England. Filmed interviews with 10 former CrCU patients and audio recorded interviews with 9 staff members were conducted and a 30 minute film of patients’ experiences was developed which illustrated the major touchpoints (key events and experiences) of the recovery journey. A patient feedback event was held for patients to rate the touchpoints and capture the emotions and keywords evoked by each touchpoint to identify the positive and negative experiences of the recovery journey. Following this, a joint patient and staff event for patients, families and staff, was held and the patient film was used to trigger emotive aspects of the patient recovery journey. This triggered collaborative discussion between patients, families and staff which focused on identifying priorities for service improvement.
Findings
Four priorities for service improvement were identified; improving the CrCU experience for patients; addressing patients’ emotional and psychological needs; positioning patients at the centre of services; and, developing a supportive framework to promote the recovery process.
Contribution to current knowledge
The EBCD methodology enabled the whole patient journey from critical illness through recovery to be captured. The focus on improving patient experiences and the development of collaborative partnerships between patients, families and staff has determined which elements matter most to patients during their recovery. Using this approach progressed care delivery, bringing what patients felt was important into the centre of service co-design and created the potential to improve outcomes.