Lessons from a review of physiotherapy and psychological rehabilitation received during ICU stay and beyond to inform the development of an ICU follow clinic

Abstract

Background

Critical illness can have a long-term impact. A service evaluation was conducted in a hospital in the south west of Britain with an adult inter-connected general, surgical and neurological intensive care unit (ICU). The aim of the service evaluation was to generate knowledge on experiences of psychological and physical rehabilitation in intensive care, on other hospital wards and at home to inform the development of an Intensive Care follow up clinic.

Method

Data was collected from two sources. A week of ICU discharges was randomly selected, and a sample of 30 patients generated. All were sent information sheets and consent forms and offered telephone appointments. 12 participants took part in telephone interviews. The second source of participants was the ICU Expert by Experience group. Informed consent was gained with eight participants taking part. The data was analysed using thematic analysis, employing initial open coding to build a framework of emergent themes. A research group was formed to facilitate cross coding of extracts.

Results

The analysis identified three overarching themes: sense making difficulties; rehabilitation context; and sense of self. The theme of sense making difficulties had sub-themes of memory gaps, delirium, lack of information and anxiety. The theme of rehabilitation context had sub-themes of ICU environment, transitions, isolation and abandonment and valued support.

Conclusion

the process of sense making can be difficult, is filtered through contextual factors, and may influence sense of self. The results have been used to inform the development of an ICU follow up clinic.

Introduction

The aftermath of critical illness has been termed Post-Intensive Care Syndrome (PICS). ¹ There is clear evidence of the physical, psychological, and cognitive impact of critical illness and delirium.^2–7 Critical illness can be a lifetime diagnosis ⁸ with significant socio-economic implications.^9,10 NICE guidelines and related policy stipulate that patients should receive assessment and intervention for psychological and physical problems throughout their care pathway.^11–13 Contextual knowledge is integral to designing health care which increases resilience and reduces the impact of PICS. ¹¹ Intensive care unit (ICU) survivors’ lived experience of rehabilitation and recovery is therefore an area for exploration for service development to better meet recovery needs. The aim of the service evaluation is to explore experiences of physical and psychological rehabilitation in ICU, on other hospital wards and following discharge. Understanding more about rehabilitation experiences across the care pathway may identify areas of need or gaps in rehabilitation. The knowledge generated will be utilised to inform the development of an ICU Multi-disciplinary Team (MDT) follow up clinic to further facilitate rehabilitation and recovery processes.

Methods

Data collection

This service evaluation was conducted in a hospital in the south west of Britain which draws from a large geographical area. The unit is comprised of an adult general ICU, with up to 18 beds, and neurological ICU, with up to 10 beds. The ICU rehabilitation team consists of three physiotherapy staff, 0.5 whole time equivalent (wte) specialist sister and 0.7wte clinical psychologist. Rehabilitation is provided by the ICU rehabilitation team, alongside other physiotherapists and allied health professionals who work into the unit and with patients across care pathways. Members of the ICU rehabilitation team work with patients at differing points; physiotherapy is focused in the unit, the specialist sister works across the care pathway, and the clinical psychologist works predominately with outpatients. The service evaluation was approved by the Audit, Assurance and Effectiveness Team.

The service evaluation was completed with two groups of participants. The first potential participants were drawn from a sample of 30 on a computer-generated list of ICU discharges during a randomly selected week in July 2018, to ensure a 6-month period post ICU discharge and the opportunity of all aspects of ICU follow up. Rather than purposive sampling, the selection of participants was influenced by recogntion that factors related to critical illness are relatively uncorrelated with longer term outcomes ¹⁴ and to review a range of rehabilitation experiences. Potential participants were sent a letter explaining the project, an information sheet, and a consent form. Each potential participant was allocated an appointment time for a telephone interview. Contact details were provided so they could cancel the appointment if they wished. The participant was called, and consent was taken prior to the interview. Participants were given the chance to ask questions of the researcher.

A semi-structured interview guide was constructed to guide the questions and ensure the same questions were asked of each participant.^15,16 The interview schedule consisted of questions about physical and psychological support at different points in the pathway; ICU, other wards and following discharge. For each stage in the pathway participants were asked: what was received, what was helpful, what was unhelpful and what might have helped. Participants were also asked about any barriers to, or helpful processes for, engagement in rehabilitation. The interviews were conducted by a psychology research assistant. Participants were thanked for their time. The interviews were anonymised, recorded, transcribed, checked for accuracy and pseudonyms allocated.

The second group of participants were the ICU Expert by Experience group. The members of the group were given information sheets and consent forms one month prior to the meeting for the service evaluation. The same interview schedule was employed for the group. To deepen the discussion, feedback was given on the themes emerging from the first group of participants. At that time the emergent themes were: memory; delirium; lack of information and confusion; anxiety; ICU environment; isolation and abandonment; length of stay and transition; negative memories of or gaps in rehabilitation and support; positive memories of rehabilitation and support; and afterwards and recovery. The discussion, with members consent, was recorded, anonymised, transcribed, pseudonyms allocated and included in the data analysis processes.

Data analysis

The data was analysed using thematic analysis, which is less theoretically bounded than Interpretative Phenomenological Analysis (IPA) or grounded theory, and allows the identification of patterns and themes in data. ¹⁷ Analysis involved a recursive process of movement across the data. Notes of any unit of interest were made and concepts logged as they emerged. Initial codes were then grouped to develop a conceptual framework, which was applied to raw data, and refined. If new themes emerged, they were tested against previous transcripts. ¹⁸ A peer support research group was established to cross code data extracts and discuss the identification of themes. Emerging concepts were clustered together, according to a perceived relationship. ¹⁹

Results

There were twelve participants in the first group, one participant’s interview included a partner. Participants were six males and six females, aged 15–79, with ICU stays of 1–11 days (average stay was 3.75 days) and hospital stays of 3 to 27 days. Eight participants took part in the Expert by Experience Group: five females, two males and one partner. They ranged in age from 42 to 72, with ICU stays of 8-23 days (average stay 12.17 days) and hospital stays of 25-160 days.

Three overarching themes emerged: sense making difficulties; rehabilitation context; and sense of self.

Sense making difficulties

This theme relates to difficulties in making sense of critical illness, with subthemes indicating blocks or barriers to this process: memory gaps, delirium, lack of information and anxiety.

Memory gaps

When asked about experience of physical and psychological support many participants were unable to remember. For example, Sid “I don’t remember any of my time in ICU so I’m not sure if I got any support”. Only three of the twelve initial participants remembered physiotherapy. Responses indicated that some struggled with having gaps in their memory; Anna “I don’t remember much about that experience … I lost a few days of my mind” and Ben “that time in my life where I remember diddly …that void”. Some memories were not a coherent memory but of specific aspects, Rob “I don’t remember the first few days of ICU, but the pain was horrendous”.

Delirium

Although participants were not asked directly about delirium it was mentioned by many. Sharon described how “I woke up having bad dreams, I’d wake up crying” and Brian “it wasn’t a nightmare; it was just very curious”. Some participants described delirium continuing after ICU: Helen “when I tried to sleep, I experienced quite graphic images and it took several weeks to go away” and related confusion; Vanessa “I do remember lots of different things from ICU, but whether lots of it were reality or delirium was quite hard to kind of establish”.

Lack of information

Participants mentioned lack of information; Frank “the only thing I would’ve liked a little bit more was being explained to me better”. There was also confusion around what had happened: Andy “I still today don’t really know what’s made me ill”. Several people mentioned ongoing uncertainty: Betty “there is still unanswered questions for me. I still don’t know what happened that day in theatre”.

Anxiety

Anxiety was a common sub-theme, often linked to delirium; Helen “I felt very anxious and jumpy”. Anxiety featured when talking about the possibility of the illness reoccurring; Betty “I wonder what happened and will it happen again?” Andy said, “everything that went near me just scared the crap out of me because I didn’t know whether it was going to set me off and kill me”.

Rehabilitation context

This theme refers to a broad range of contextual factors with sub-themes of: the ICU environment, transitions, isolation and abandonment and valued support.

ICU environment

The ICU environment was often spoken about in negative terms. Mark’s partner said, “it was just so open, and I didn’t take any of my children with us because they would have died looking at it”. Perceptions often inter-related with delirium: Brian “there was a table opposite me where they had a raffle and they were calling out numbers and people were going up and receiving their prizes and I thought this was odd because opposite me was a poor lad who’d been stabbed I think 6 times”. There were positive reflections: Betty “there was nothing in the actual experience that could’ve gone better, you felt so safe”. Some participants worried about their behaviour in ICU; Julie “I suppose it is because I feel a bit guilty because I was pulling all of these tubes out and making life difficult for the nurses and doctors.” The ICU rehabilitation team includes a therapy dog. Brian remembered, “there was a helping dog, a labradoodle, quite a large dog with a sort of coat on and he was coming round the ward … I had a little chat with Hovis”.

Transitions

In talking about rehabilitation at different points in the care pathway a common aspect was how quickly things changed: Diane said, “everything just happened so quick, so I didn’t have time”. Sharon mentioned: “from ICU the first couple of days on the ward … . it was such a big transition”. Transitions were acknowledged as times of change: Ruby “I went to an ordinary ward after ICU … . I went to what I would consider the wrong ward”. Transitions were a point of recognition: Vanessa “it is a massive transition from like one to one care to having two nurses on a ward … . for me it was the first time that I was actually like I do have something wrong with me”. Some found transitions anxiety provoking; Tina “when I went up to the ward, I could not do anything, and I could not speak and sometimes your buzzer is not always where it is”.

Isolation and abandonment

A sense of isolation was mentioned in several interviews: Mark “he was in a side room … He was isolated”. There were references to feeling abandoned or neglected: Sharon “I felt once I left ICU, I was just one of a patient … I felt I was a bit neglected”. References to abandonment were linked to different professionals: Rob “I’ve been in ICU a few times and had PTSD (Post-traumatic Stress Disorder) but didn’t receive anything” and Claire “CAMHS (Child and Adolescent Mental Health Services) letting go of me really easily like I should be able to still see them and speak to them”. A sense of abandonment continued after hospital discharge; Ben “cast out really, no follow up … right bye then” and Vanessa “after ICU I had absolutely nothing.” Participants made suggestions: Helen “the survey you sent out was great, but I think it should have been sent out a bit earlier” and Betty “the offer of even three months later saying let’s just look at what happened”.

Valued support

Some participants describe rehabilitation as valuable: Frank “the physio I had was brilliant and what I needed to be fair erm I didn’t need anymore” and Claire “everyone was really supportive”. Tina spoke of orientation processes; “they write on the board every day don’t they, tell you what the weather’s like, I like that.” There was recognition of emotional support offered by nursing staff: Betty “psychological support really came from the nurses” and Helen “the nurses who would come and give me a hug”. There was positive feedback about the use of diaries: Sid “it (diary) made me feel better about living” and Sharon “I couldn’t bring myself to read it (diary).It filled some of the gaps … I’d wish I’d read it before to be honest”. There were positive reflections on rehabilitation hospital; Lyn “they had it all there under one roof.” Mention was made of positive care packages: Julie “I went back to my place and I had the physio come, I had somebody come to arrange carers, so it was set up … nothing was too much trouble for them.” Some participants did not need further support: “I don’t think I really needed it “and “It was just enough”.

Sense of self

This theme captures a range of responses related to how experiences of critical illness continue to impact.

Some participants mention changes in functioning including ongoing physical issues: Sid “my hearing and memory aren’t great. Also, my sight in my left eye” and Mark “he came back from the hospital he had pain”. There were indications of a psychological impact; Ben; “I did not realise I was suffering from PTSD as well so it was like a trippy type thing really, you know, I would n’t say scary but very uncertain”. Some participants returned to previous activities; Anna “last week of September I went back to work”. There were suggestions of what might be helpful: Mark “checking that everything is being reviewed and everything is being prepared. And everything is following on”. Some participants, particularly those in the Expert by Experience group, acknowledged feeling quite different following critical illness, as captured by this discussion:

Ben “I think it’s ongoing … . and there’s no guidebook obviously, there’s just adapting to individual circumstances.”

Tina “I have said this before, the person I was a few years ago is gone, it’s there but I have had to move into a different chapter, move on to be somebody different.”

Discussion

The service evaluation focused on physical and psychological rehabilitation at three points: in ICU, on other hospital wards and once discharged. However, the emerging themes are of the wider experience of critical illness. The strongest theme is the process of sense making, which is filtered through contextual factors, possibly influencing a person’s ongoing sense of self. When asked about experiences of rehabilitation, participants referred back to their memory of being critically ill, and the over-riding sense is of a difficult process, because to refer back involves connection to a time of confusion and uncertainty. The sense of uncertainty, and consequential impact on sense making processes, appears to influence contextual perceptions and, for some participants, there remains an ongoing sense of uncertainty. Both groups of participants provided feedback included in all three themes; however, the Expert by Experience group data was much stronger in relation to the sense of self theme. Group members had longer ICU stays and the resultant impact on their sense of self may be why they attend the group. This process has identified an area to be explored in future research with the Expert by Experience group. There are indications that length of ICU admission is not a defining variable in critical care rehabilitation processes but might influence longer term adaption. Overall, the results recognise known factors such as difficulties around transitions ²⁰ and echoes research on ICU survivorship and self-identity. ²¹

Feedback was from ICU survivors with different experiences at different time points to generate a range of data, however common themes exist, suggesting a process of transition from a sense of self prior to and following critical illness which is harder for some than others. It has long been known that survivors can become increasingly dependent and modify life habits beyond medical indications. ⁵ This service evaluation points to the possibility that a proportion of ICU survivors experience an ongoing confusion, which impacts on their understanding of being critically ill, and its integration into onward recovery. This suggests that sense making is an important aspect of rehabilitation and recovery. A serious illness is both a medical event and a lived narrative, parallel narratives which need to be brought together. ²² ICU follow up clinics could offer the opportunity to bring these two narratives together, simultaneously up-dating perceptions of the past, identifying current ongoing recovery needs, and providing appropriate intervention. The limitation of this study is that it is a service evaluation exploring the experience of physical and psychological rehabilitation with a small group of patients on a single site. The data gathered is not generalisable to broader populations and further studies are required before generalisations can be made. ²³ However, the study indicates possible areas for consideration.

Implications for practice

Responses identify difficulty with understanding what happened, possibly reflecting the ability to process information at the time, and the impact of delirium. The results underline the need for interventions such as orientation ²⁴ and patient diaries.^25–27 Findings suggest the importance of critical care staff maintaining involvement across care pathways, ²⁸ ensuring integrated follow up interventions meet and support the lived experience of ICU survivorship, with a focus on up-dating memory, and supporting an emerging adaptive sense of self, to facilitate recovery processes. The findings will inform the development of an ICU MDT follow up clinic, which will then be subject to a service evaluation in due course. The design of the follow up clinic has been discussed with the Expert by Experience group, who expressed a preference for individual appointments. The follow up clinic will be structured to allow each person, and whoever they choose to bring with them, to attend three separate appointments; with an ICU consultant to review the medical narrative and identify any related ongoing medical issues, with the specialist physiotherapist or nurse to review physical and other functioning, and with the clinical psychologist to review lived experience and adaption. The follow up clinic will include the option to visit the ICU. The clinic will be offered on an opt in basis, so ICU survivors self-select if it feels useful for their recovery process. The structure of the follow up clinic provides the context to address possible sense making difficulties through; the provision of a medical narrative, seeing the unit, exploring the lived narrative, including delirium experiences, and reviewing ongoing rehabilitation needs. The overarching aim is to facilitate the integration of critical illness experiences into self-identity and consequentially to enhance recovery processes.