Survival from critical care is increasing (Zimmerman et al, 2013) and there is now mounting evidence to demonstrate the challenging recovery trajectory many patients and caregivers face following a critical care admission (Herridge et al, 2011; Wade et al, 2012; McPeake et al, 2016).
As a result, many clinicians have implemented follow-up and aftercare to support this vulnerable group of patients (Mehlhorn et al, 2014). Strategies include formal outpatient follow-up (multidisciplinary and nurse led), and formal and informal peer support groups, each of which can take a variety of forms (Cuthbertson et al, 2009; McPeake et al, 2017; 2019).
There is currently limited evidence of the benefits of these services for patients or caregivers (Schofield-Robinson et al, 2018) and, to date, no research has explicitly sought to understand the effect of aftercare on the critical care multidisciplinary team.
We wanted to understand the feasibility of running a patient and family event for survivors of critical illness and the staff from critical care. Further, we aimed to explore what impact such a forum could have, not solely on patients or caregivers, but also the impact it could potentially have on staff.
Aim
The aim of this quality improvement (QI) initiative was to understand the impact, if any, of a non-clinical forum on critical care survivors and the critical care multidisciplinary team.
Methods and materials
Ethics
After discussion with the chairman of the local ethics committee, the project was deemed a QI initiative because it did not meet the criteria for clinical research. The participation of all staff, patients and caregivers was voluntary. The data collected for the project and described in this article were anonymous.
Participants
All members of the critical care team, including allied health professionals, nursing, medical, administrative and domestic staff, were invited alongside patients and caregivers. Our hospital is a large inner city teaching hospital with 20 critical care beds, and it accepts medical and surgical patients.
All the patients and caregivers who were invited had attended the follow-up programme in our critical care unit. There was a wide range of follow-up timeframes for those invited, with patients having been discharged from critical care for between 6 and 48 months previously. Before an invitation was sent to patients' home addresses by post they were screened to ensure that they were still alive and not an inpatient. Named invitations were sent to all staff in the unit. Posters were also placed across the critical care unit staff areas to advertise the event.
Methods
The non-clinical forum took the form of a patient and family day. This informal event was run over one afternoon. The day had a loose structure, with a number of patients and caregivers speaking throughout the afternoon about their experience of critical care and recovery to encourage discussion. Staff facilitated informal discussion, where necessary. The event was held in a venue close to the hospital grounds. We deliberately chose premises outwith the hospital to encourage participation by all groups and to ensure that participants knew it was not a formal hospital appointment.
Data analysis
To evaluate the afternoon, we asked all those who had attended to complete a feedback questionnaire to elicit the following:
The questionnaire included space for free text. For two questions (venue and overall rating of the day), a Likert scale of 1–5 was used, with 1 indicating poor and 5 excellent. Qualitative comments from the free-text box and all other questions were analysed using content analysis by two critical care clinicians (CR and LJ) (Burnard, 1991). The themes were initially analysed separately for patients/caregivers, and for staff members. Common and differing themes were then explored among the two groups. Peer review was undertaken by a separate clinician (TQ).
Results
A total of 73 individuals attended the day—a combination of patients, caregivers and staff; 56 evaluations were completed, giving a 77% response rate (25 staff and 31 patients/caregivers). When asked about the day, 100% of patients/caregivers and 88% of staff thought the day had been either ‘very good’ or ‘excellent’ (31 responses).
Five themes were generated from the free-text data across all groups:
Table 1 lists the themes and provides some supporting quotes.
Patients and caregivers discussed how they valued meeting other people who had been through similar experiences, and how they appreciated learning from this. For example, one patient/caregiver said:
‘Not [being] alone. Hearing other people's stories … is very good.’
| Theme | Supporting quotes | Group represented |
|---|---|---|
| Peer support | ‘Talking to previous patients’ |
Patients/caregivers |
| Understanding the journey | ‘Listening to a patient story’ | Staff |
| Feeling valued/demonstrating appreciation | ‘Hearing from patients about their journey after ICU and seeing staff surprise when patients recognised them’ |
Both groups |
| Role change | ‘Initially nervous, but thought-provoking and joyful’ | Staff |
| Further opportunity | ‘More people coming along and joining in’ |
Both groups |
Staff said they had initially felt apprehensive and unsure, and then overwhelmingly positive:
‘Initially nervous, but thought-provoking and joyful.’
Staff said what made this a positive experience was the ability to hear the experiences of critical care patients and caregivers within the entirety of their journey, not solely their exposure to critical care:
‘Hearing all the stories of past patients and also to meet the people I'd looked after.’
Staff and patients both considered that the day had been worthwhile from a standpoint of feeling valued and showing appreciation:
‘You all do a great job and are very much appreciated for all of the time and effort you put in.’
Finally, there was an overwhelming desire for further opportunity for staff and patient/caregiver engagement in this type of context. Participants documented that they wanted more opportunities such as this one:
‘More people coming along and joining in!’
Discussion
This small-scale evaluation has demonstrated that a patient, caregiver and staff non-clinical forum is feasible. Further, it has presented preliminary evidence to suggest that this type of event equally benefits patients, caregivers and staff. There is growing evidence of the impact of burnout on the multidisciplinary team in critical care (Costa and Moss, 2018). Staff burnout leads to increased absenteeism and can affect emotional, physical and mental health (Moss et al, 2016). Factors that can lead to burnout include poor work-life balance, depersonalisation of the situations staff experience, and the emotional exhaustion of the workload (Costa and Moss, 2018).
The event provided staff with the opportunity to understand the patient journey and feel valued in their role: this could potentially have a positive impact on staff wellbeing and increase the joy they get in their work. More research is required.
The findings were consistent with previous research in terms of the significance of peer support, which emerged as a theme (Mikkelsen et al, 2016). Work around peer support as a mechanism for recovery is being developed by the Society of Critical Care Medicine's THRIVE initiative (McPeake et al, 2019). This data would suggest that peer support has a positive effect on patients' wellbeing, but more research is required before it can be recommended as an intervention.
This small scale evaluation has limitations. Its single-centre nature limits the generalisability of the findings. Further, only patients who had attended the critical care follow-up programme that is available in the centre were invited to the event. This tight inclusion criteria may also limit the generalisability of the findings.
Conclusion
This single-centre QI project has demonstrated that a non-clinical forum for previous critical care patients, their caregivers and staff is feasible and may offer tangible benefits for all participants. Further evaluation of the impact of such an intervention is warranted.