Introduction

The complex nature of recovery following critical illness underpins the need for an in-depth understanding of the challenges which patients face. This is particularly important as persistent physical, psychological and cognitive deficits are highly prevalent [1–4] and contribute to readmission, mortality, and increased healthcare costs [5–7], often referred to as Post Intensive Care Syndrome (PICS) in literature [8]. To advance outcomes after critical illness, it may be helpful to explore patients’ views about what factors may have positively contributed to their recovery and whether there were any gaps in services. This could inform the need for, and timing of rehabilitation interventions that could enhance recovery.

Qualitative research is a useful methodology to collect and analyse in-depth information from patients [9]. Recently, there has been an increase in qualitative research on experiences and challenges patients face following critical illness [10, 11]. This has primarily focused on exploring patient’s perceptions of recovery in the early stages (up to six months) after intensive care unit (ICU) discharge and often at one timepoint [12, 13]. Few studies have explored patient views about recovery over a longer period of time, yet a recent review has highlighted the importance of identifying support needs following ICU discharge, as these can change throughout the recovery trajectory [14] and problems associated with PICS can last for months or even years [8, 15]. Whilst the critical care community is increasingly aware of the long-term problems associated with an ICU admission, there remains a general lack of services to address these problems [24].

Identifying, patients’ perceptions about facilitators of recovery and gaps in service delivery may be important to inform future service development for the post ICU population. A lack of explanation of disease events and of expectations about progress during critical illness and recovery, as well as poor or absent transition of care between the primary hospital and discharge destination, have been reported [13].

The aim of this study is to explore the views of patients after discharge from ICU about their recovery at six and twelve months and factors that facilitated recovery, and to determine additional services that patients felt were missing during their recovery. It is anticipated that the results of the study will inform future patient centred strategies that can support recovery following discharge from ICU.

Methods

Face-to-face semi-structured interviews were conducted at six and twelve months with patients attending an outpatient assessment clinic as part of an observational study which included measurements taken at six weeks, six months and twelve months between November 2018 and December 2019.

Patients aged ≥ 18 years old, with an ICU admission including mechanical ventilation ≥ 48 hours, who were discharged home (self-care/carer) within 12 weeks were included in the study. Exclusion criteria were patients with a clear negative disease trajectory, existing specialist care pathway (e.g., stroke unit), declined consent or unable to give consent.

All patients satisfying the eligibility criteria (n = 15) were provided with written information about the study. The study visits took place at one of five participating hospitals in Northern Ireland. Demographics (Table 1) and objective measurements (UK FIM + FAM Motor and Cognitive scores, step counts, MSWT distance and handgrip strength score) were collected from participants during their follow up appointments. An interview guide (S1 File) was developed in line with the aims of this study, to explore the participants’ perceptions of their recovery and what helped facilitate recovery at six and twelve months. Where helpful, we used the objective measurements to guide part of the interview discussion to identify if some measurements (such as items within the FIM + FAM) had changed and to explore what contributed to this change. Following training, semi-structured interviews were conducted by NG, JB and BON. Interviews were audiotaped and transcribed verbatim by an independent transcriber. Written, informed consent was obtained from each participant and again verbally before each interview. Ethical approval was obtained from the Northern Ireland Research Ethics Committees (REC Reference: 17/NI/0115).

Download:

• PNG
  larger image
• TIFF
  original image

Table 1. Characteristics of participants completed interviews at 6 months (N = 11).

https://doi.org/10.1371/journal.pone.0297012.t001

Results

Patient characteristics of participants who completed interviews at six months are shown in Table 1. (Individual participant demographics can be found in S4 File). This was a heterogenous population, with a mean age of 53.2 years and a clinical frailty score of four indicating a vulnerable population who were in the early stage of hospital discharge.

Four core themes were identified through analysis of the interview transcripts; 1. Recovery of physical activity and function, 2. Recovery of emotional and cognitive function, 3. Facilitators to recovery, 4. Gaps in healthcare services.

Discussion

This patient centred study explored views about recovery after discharge from hospital after an ICU admission, and particularly focused on facilitators of recovery during the first year. The novel findings about factors that facilitated recovery, combined with the services that were missing could be used to inform a comprehensive rehabilitation intervention that includes patient-directed strategies, and access to healthcare services that patients feel are helpful to their individual recovery needs.

The demographics of the population are broadly similar to other studies assessing patients following discharge from ICU [19, 20]. The mean clinical frailty score of the participants indicated a vulnerable population who were in the early stage of hospital discharge. Patients with scores of four to five (vulnerable/mildly frail) have been reported in other studies [21] and these scores have been associated with increased risk for ICU mortality [22]. Thus, the participants included in this study are representative of ICU populations and the study findings can be used to support patients discharged home from ICU.

This data included patients views at six and twelve months and although it is evident that some post-ICU patients have experienced some recovery over time, for others problems relating to physical activity and function, and emotional and cognitive function can still persist. Therefore, supportive strategies and follow up services may need to be accessible for at least twelve months after ICU discharge.

Patients described a diverse range of physical, emotional and cognitive problems. Recovery appeared to be individual, variable, unpredictable and complex and access to specific health care services appeared fragmented. In this study some patients independently implemented strategies to help their recovery, but it was clear that not all patients were able to do this themselves. Where healthcare services were not available this was described as contributing to slower or poorer quality of recovery. Service gaps perceived by patients included follow-up from healthcare professionals such as clinical psychology, information on accessing services, access to exercise rehabilitation, support from others that had been through a similar experience and personal feedback. Additional resources will usually be needed to facilitate the provision of these services. In the UK access to follow up services has increased across the last decade although challenges remain such as lack of dedicated staff, lack of funding, varied content, timing of service provision and omission of specific health professionals [23]. While the present study has helped to identify facilitators of recovery and services that are needed, it remains unclear how and when to best provide follow up services, rehabilitation, information and support [14, 23, 24].

Some patients were able to facilitate their own recovery by integrating the use of equipment, such as walking aids to increase their mobility, and technology to listen to music or access health apps to manage stress and anxiety. Others were less confident to do this and relied on guidance from family or health professionals e.g. occupational therapy, clinical psychology, GP. To fill these gaps for support and services, individual patient assessment could personalise recovery strategies according to patient needs [19, 25]. Identifying self-referral opportunities could be sufficient for others, especially if they are highly motivated [26]. Self-motivation and goal setting were helpful for some patients; therefore, interventions are recommended where clinical teams support and improve effective management and self-management by communicating with patients, clarifying the illness, supporting treatments, and helping with action plans have potential to be successful. The positive benefits associated with goal setting support the findings of Leventhal, Philips and Burns [27] and Leventhal’s Common-Sense Model of Self-regulation [28].

Patients expressed the need to talk to someone about their recovery or someone that has been through a similar experience. Chaboyer and Grace [29] described how survivors of critical illness gained comfort from identifying with others’ experiences, and this helped normalise their own experience. Other post ICU patients have highlighted the need for information to enable them to understand their ICU admission and their current health status during and post-hospital discharge [30]. Providing the opportunity for post-ICU patients to ask questions and gain knowledge of their intensive care stay does provide some security for the post ICU population [31]. Patient support groups, follow up clinics, and provision of ICU diaries could be embedded to provide opportunity to meet others, and provide this information.

Overall, the study findings provide a range of strategies that could be used to fill the perceived gaps that patients identified and to support patient recovery in the future. We have organised these strategies according to support needs categories that have been identified in other research studies in this area (Table 2) [14, 19, 30, 32]. This includes ways to support informational needs, such as signposting to other services; support for emotional needs, e.g. by provision of a support group to meet with others who have been through a similar experience; methods to support instrumental needs, e.g. provision of equipment; use of technology; strategies to support appraisal needs, e.g. provision of a follow-up service, setting goals; and support for spiritual needs, e.g. understanding beliefs, positive attitude. This information could help other researchers and clinicians to devise services to implement these strategies. Several methods could be considered including patient led strategies, services directed by healthcare professionals [24], exercise and rehabilitation classes [33], patient manuals [34], digital health [35], ICU diaries [36, 37], visiting ICU [34], support groups [38] or a combination of these.

Download:

• PNG
  larger image
• TIFF
  original image

Table 2. Strategies that could support recovery aligned to patient support needs.

https://doi.org/10.1371/journal.pone.0297012.t002

In summary, implementation of facilitatory strategies and missing services that were highlighted by patients could contribute to improvements in patient outcomes. The small sample may limit application of the results to geographic areas where patients experienced other opportunities to help recovery. However, other qualitative studies with small sample sizes have similarly provided rich and deep insights into patient experiences of recovery [39]. The strengths of this study include the exploration of both medium and longer-term perspectives of recovery (six months and twelve-months) following post-hospital discharge along with robust data cross-checking and analysis process helped to enhance the trustworthiness of the findings [17].

Conclusion

Patients described physical, emotional and cognitive problems up to twelve months after ICU discharge. Patient reported facilitators to recovery include support and guidance from others and self-motivation and goal setting, equipment for mobility, and use of technology. Barriers include a lack of follow up services, exercise rehabilitation, peer support and personal feedback. In this study, access to specific health care services was fragmented and where healthcare services were not available this was described as contributing to slower or poorer quality of recovery. ICU patient recovery could be facilitated by a comprehensive rehabilitation intervention that includes patient-directed strategies and health care services. Rehabilitation components should be individualised and accessible for at least twelve months following ICU discharge.

Supporting information

Acknowledgments

Thank you for the support from staff in the Northern Ireland Clinical Research Network, and to the patients who kindly took part in this research.