An exploration of patient perspectives and experiences of a 6-week outpatient rehabilitation programme following critical illness: A qualitative study

Introduction

Critical care survivors commonly experience persistent disability, including the requirement of walking aids, assistance with personal care and not being able to return to work or social activities within 6 months (Ferrante et al. 2016). Physical and cognitive impairments are also evident at 9 months post-critical illness (Girard et al. 2010). Individuals can also experience varying levels of social institutionalisation due to a lack of functional ability and confidence, negatively impacting quality of life (Ferrante et al. 2016).

At present there is not an exercise-based intervention started after discharge from critical care which has been determined to have an overall effect on functional exercise capacity, or on health-related quality of life (Connolly et al. 2015). There is also variability in terms of the provision of rehabilitation programmes in either outpatient or community settings across the United Kingdom (UK) where these are not widely established and available as standardised care. For those healthcare settings which do provide outpatient exercise rehabilitation programmes for survivors of critical illness, the need to explore the lived experiences of those who have utilised such services is warranted (Aitken et al. 2015). The aim of this study therefore was to explore the lived experiences of survivors of critical illness who have attended an outpatient rehabilitation programme.

Methods

A qualitative methodology was chosen as the ideal approach to explore patient perspectives and experiences of attending the critical care rehabilitation programme to gain an understanding of whether the programme has had an impact on participants’ lifestyle, function, health and quality of life (Barbour 2014).

A focus group was utilised to allow exploration of patient perspectives and experiences in order to collect sufficient data to create themes regarding the reported effectiveness of the rehabilitation programme following critical illness (Carpenter & Suto 2008). Focus groups enable free-flowing discussions between participants in a group environment which can develop new or forgotten thoughts providing increasingly rich data, and were therefore appropriate for this study (Hicks 2009; Barbour 2014).

The focus group was held in an informal setting within a primary care national health service (NHS) Hospital meeting room. Carpenter & Suto (2008) suggests that face-to-face meetings will facilitate discussions and encourage rich data collection. Participants were recruited by criterion-purposive sampling, an effective method of selecting participants who have common characteristics which can positively impact the interaction within the focus group (Pope & Mays 2000).

Participants

Ten of the potential 15 participants who completed the critical care rehabilitation programme between 2018–2019 at one NHS Trust in the United Kingdom (UK) met the inclusion criteria. A total of five participants were available on the selected date and consented to attend. The duration for these five participants between hospital discharge and commencing the rehabilitation programme was between six and ten weeks.

Inclusion criteria

• Have had an admission to critical care for longer than 4 days.

• Completed the 6-week outpatient rehabilitation programme within the last year to ensure accurate representation of the programme.

• Over the age of 18.

• Able to provide written consent.

Exclusion criteria

• Known cognitive deficit that may influence the ability to recall thoughts and feelings regarding the critical care rehabilitation programme.

• Non-English speaking, as language can cause negative barriers to the development of discussion within a focus group (Stewart & Shamdasani 2015).

All individuals who attended the programme that met the inclusion criteria were initially contacted by the researcher (HB) via post and provided with a participant invitation letter and information sheet to allow the individual to make an informed decision as to whether they wished to participate in the study. The researcher then made contact via phone call 1 week after the distribution of the information to discuss any further questions and establish whether the individual wished to take part in the research study. Individuals were made aware they could withdraw from the study at any time (Carpenter & Suto 2008). Participants made an autonomous decision to participate, improving credibility of the methodological approach (Wendler & Wertheimer 2017).

Prior to data collection, the researcher acknowledged positionality, as pre-conceptions may influence the interpretation of results (Mason-Bish 2019). Acknowledging positionality and referring to this throughout, the methodology aims to improve the trustworthiness of the results (Cypress 2017). A positionality log was also completed to consciously acknowledge and set aside preconceived notions to improve data dependability and minimise the influence of research bias (Maguire & Delahunt 2017).

The focus group was conducted by 2 members of a respiratory therapy team who were separate to the researcher, in order to reduce researcher bias, increasing data credibility (Pannucci & Wilkins 2010). One facilitated the discussion and one took field notes as a form of bracketing to strengthen confirmability (Gearing 2004).

From the available literature and the experiences of the author who had involvement in the programme, 6 questions were developed for use as the topic guide (Appendix 1). The topic guide enables a structured framework that can help guide the focus group to achieve its aims and objectives although used in a loose and open form to minimise bias during data collection (Smith & Firth 2011). These enabled a range of information about the rehabilitation programme to be gathered, using a semi-structured questioning format. Prompt sub-questions were also given to the facilitator prior to the focus group for use if required, although the facilitator was advised to be spontaneous with open questions depending upon how the discussion was developing:

1. How did you feel about being asked to participate in the exercise programme?

2. What were the pros and cons to the exercise programme?

3. How did it make you feel having other participants in the class who also had been critically ill?

4. How did the exercise programme affect your day-to-day activities?

5. How did the exercise programme affect your quality of life?

6. Is there anything else you would like to add about the exercise programme and the impact upon your lives after being critical ill?

The focus group was audio recorded using 2 dictaphones and transcribed by the researcher into textual data within 3 weeks and saved onto a password protected word document and computer in order to comply with confidentiality and information protection (Merriam & Tisdell 2015). Transcription was anonymised and participants were referred to by number in order to increase participant confidentiality and comply with the ethical principle of autonomy (Merriam & Tisdell 2015). Both dictaphone recordings were deleted after transcription.

Data was analysed based upon Braun & Clarke (2006) inductive thematic approach. This allowed an increase in trustworthiness of the analysis process for the novice researcher.

Following the focus group, a thank you letter was sent via post to all participants, including an overview of themes identified. Participants were asked to respond if they felt this was not a true reflection of discussions as a form of member checking in order to maximise the accuracy of interpretation and therefore improve credibility of results (Birt et al. 2016).

Ethics

Approval was gained by Coventry University Research Ethics Committee, NHS Trust Research and Development, the Integrated Research Application System (IRAS) and Health Research Authority Ethics Committee in January 2019 (258215).

Results and discussion

In summarising the results, the critical care rehabilitation programme was beneficial to all who attended. The benefits that were reported included: improved physical, functional and psychological factors, and reducing barriers created by protective family behaviours, poor education on self-progression and difficulty setting a routine to build their exercise tolerance. Participants recommended that the time between hospital discharge and starting the programme could be reduced in order to promote the above benefits as soon as possible. Finally, a 6-week programme may not be sufficient in order to optimise the benefits that participants wanted.

A thematic map was generated to refine, relate and conclude the themes found without the use of assisting software. These themes can be further divided into subthemes (Figure 1).

Figure 1: Themes and sub-themes.

Barriers to exercise post-critical illness

Participants highlighted that there are many barriers to progressing post critical illness. 1 participant spoke about how family can inhibit functional independence post critical illness.

‘My husband bless him, he’s wonderful but he wouldn’t let me do anything’ (participant 3).

‘I mean I can understand his feelings’ (participant 2).

This protective behaviour from family members, built from the stress of the critical illness may inhibit patients’ progression following discharge from hospital, becoming a barrier to physical and functional independence. Participants felt that the rehabilitation programme helped to overcome these protective behaviours surrounding family anxieties, thus suggesting the programme had a positive impact.

‘I started the rehab and I was able to tell him what they let me do and what they wanted me to do and of course it helped out and he started to let me go a bit’ (participant 3).

These findings support the idea that the upheaval associated with the traumatic event of critical illness can cause anxiety, stress and over-protective behaviours as found by Eggenberger & Nelms (2007) who completed a semi-structured interview to investigate family experiences when an adult member of the family is critically ill.

Participants also highlighted how, when left to their own devices, there is uncertainty as to the manner in which to progress, which may cause a barrier to participating in independent rehabilitation, subsequently impacting recovery and quality of life.

‘I wanted to get better and I didn’t know how to do it properly’ (participant 3).

‘You don’t quite know what to do with yourself’ (participant 3).

‘You don’t know what you are capable of doing’ (participant 2).

‘At home you don’t know what to do’ (participant 4).

Upon discharge many patients go home with no initial support or direction. The results suggest that participants felt that this could have negatively impacted their recovery. Connolly et al. (2015) reports that for some this is daunting and challenging. The implications of patients being unsure how to progress following discharge from hospital may prevent physical independence, prolong social institutionalisation and contribute to a reduction in quality of life (Fan et al. 2014). Participants’ perspectives of the benefits of the critical care rehabilitation programme included the ability to complete more physical tasks and increase exercise tolerance, suggesting the programme may positively improve strength although needs further investigation. The critical care rehabilitation programme appears to offer an opportunity to overcome potential barriers which patients face by building strength and independence which may have additional longer term financial benefits to healthcare.

Additionally, prior to starting the critical care rehabilitation programme participants reported that they found it difficult to independently maintain a strict and consistent exercise routine that supported their recovery. Additionally, the economic influence of cost to attend community facilities was also mentioned as a barrier to participating in independent rehabilitation. Participants did not wish to spend the money to attend community facilities and identified that those who are working may not be able to commit the time and money associated with community facilities.

‘Life gets in the way’ (participant 5).

Benefits of the programme

The critical care rehabilitation programme appears to have provided a focus for participants on recovery and begins to address the physical and functional benefits that occur when participating in exercise. Secondly, participants reported how exercising in the group setting with other participants who had also survived critical illness highlights that they are not alone and had psychological benefits. It has been demonstrated that patients can have difficulty returning to their previous social activities following critical illness up to nine months following hospital discharge (Girard et al. 2010); however, the importance of re-engagement in these activities is important for mental health and wellbeing.

‘It is very scary and it is reassuring to know that it is not just you that other people, it’s quite common’ (participant 4).

‘It’s good to share your experiences’ (participant 2).

‘And whilst talking about it is very hard, it is beneficial because you can talk to each other and realise it’s not just me, it’s quite common’ (participant 4).

‘I could walk further’ (participant 4).

‘My wife can see the difference no end’ (participant 1).

All participants reported an improvement in their physical and functional ability and had perceived benefits of participating in the rehabilitation programme. When asked, participants all reported that the service is needed for this very reason. The critical care rehabilitation programme appears to have provided a focus for recovery and begins to address the physical benefits that occur as a result of participating in exercise. Secondly it became apparent that participants also felt that there were other psychological benefits to participating in the critical care rehabilitation programme when being surrounded by others who have gone through similar situations, whereby the supportive environment offered by the programme became evident.

Timings of the programme

A common topic raised during the focus group was in relation to the length of the rehabilitation programme, and duration between hospital discharge and commencement.

‘For me I was discharged in May and then it was August time erm, so I had gone through my initial recovery period, I wanted it straight away’ (participant 5).

‘It depends if you have had any operations and what you have. I think you should be able to start within a month’ (participant 2).

‘Within 6 weeks definitely’ (participant 4).

All participants reported that the 6-week rehabilitation programme was too short and they wanted to continue attending to maximise the recovery benefits. Participant perceptions of the length of the programme should support those involved in decision making in providing the service.

‘6 weeks was too short, I think it should be increased, but brilliant, absolutely brilliant’ (participant 1).

‘I would like it to be an ongoing thing as it did actually help. It was definitely worth it. I just think it should become permanent’ (participant 5).

‘Three months, yes I wouldn’t have a problem with 6 more weeks’ (participant 5).

‘I did 18 weeks as I did pulmonary rehab as well and that is probably about the minimum length of time that you want’ (participant 1).

‘But it is down to peoples’ preferences because what is wrong with you compared to what is wrong with someone else, you might not need as long as somebody else where as I needed more’ (participant 4).

Two quantitative studies conducted by McWilliams et al. (2009) and Denehy et al. (2013) examined the impact of a critical care rehabilitation programme and had differing frequency of sessions per week and lengths of programme. A lack of standardisation in the literature as to the frequency and duration of critical care rehabilitation programmes highlights an area for further research in order to maximise patient recovery as these aspects may influence the success of the critical care rehabilitation programme and patient outcomes.

The programme appeared to have positive effects in relation to the reported benefits given by participants, although it is not clear if lengthening the duration of the programme would be necessary or provide additional benefits. However, any decisions as to frequency and duration of the programmes needs to be matched with availability of resources and cost effectiveness and suggests further research into the programme duration needs to be explored.

Limitations

There was the potential for leading question bias within the data collection, as the facilitator had background knowledge of the critical care rehabilitation programme. However, Hicks (2009) argues that having an underlying knowledge of a subject can aid the discussion, as the questioner can be intuitive, adapting to the needs of the focus group to improve flow, without influencing discussions or results. In addition, positionality was considered throughout and therefore supports in maximising confirmability of the findings.

The transcription and data analysis were only conducted by the researcher, it would have been beneficial to have the facilitator of the focus group read the transcription to confirm content and use of triangulation within the data analysis process to further maximise credibility.

Conclusion

The findings suggest that a 6-week physiotherapy led outpatient rehabilitation programme following critical illness offers participants a supportive and motivational environment. This enables participants to fully engage in optimising their recovery and minimising the long-term impact of critical illness. The physiotherapy-led nature of this programme supports the role of the physiotherapist in having an essential role in the provision of support, by demonstrating clinical expertise in rehabilitation and individualised exercise adaptation throughout the programme.

There is limited research exploring the effectiveness of critical care outpatient rehabilitation in both quantitative and qualitative research. Participant perceptions in this study of the critical care rehabilitation programme were positive; all participants would recommend the service to others who have experienced critical illness. The timing of commencement of the programme following hospital discharge, and the frequency and duration of the programme are aspects highlighted in this study that warrant further exploration. Each participant gained benefits from participating in the programme which then translated into their normal daily activities. The benefits explored during the focus group highlight the need of the service, to not only support patients back to physical function, but to provide holistic care by reducing the psychosocial factors associated with critical illness.

Key points

1. The programme was successful in supporting both the individuals, and therefore their families, in recognising what the person was physically capable of doing.

2. Important area of research and timely given COVID-19 and the current population of critical illness survivors.

3. To ensure evidenced-based practise and best patient care, further research into the effects of a critical care rehabilitation programme and on its delivery and duration would be recommended to ensure the programme provides the most effective content. This may influence understanding of what community resources might be helpful for this population.

Acknowledgements

I would like to thank the participants who took the time to attend the focus group and to all of those who have helped during the preparation and completion of the focus group as well as those who have supported me in producing this article.

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