Original article
A critical review and synthesis of qualitative research on patient experiences of critical illness

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Summary

Aims

To critically review the literature in order to describe the themes associated with the experience of critical illness and consider how these inform the patients understanding.

Background

Critical illness requires life-saving intervention and application of high technology medicine and intensive nursing within a specialist critical care unit. Whilst an extensive and rapidly advancing knowledge of the physiological basis for treating critical illness exists, understanding how critical illness is experienced by the patient is less well understood.

Data sources

Literature was retrieved through systematic searching of electronic databases, hand searches of journals and incremental searching.

Review methods

26 qualitative studies of firsthand experiences of adult patients who had been in a critical care unit were reviewed. Key, common, explicit themes between the studies were identified as well as implicit themes that emerged through preliminary synthesis.

Results

Eight common explicit themes were identified. These included: Transformations of perception: Unreal experiences and dreams; Proximity to death; Transformation and perception of the body in illness; Transformation and perception of time; The critical care environment: technology and dependence; Care, communication and relationships with healthcare professionals; The support of family and friends and desire for contact; Transfer from critical care and recovery from critical illness. A further two implicit themes related to the primacy of the critical care unit within the studies; and the focus of recall or personal meaning which divided the literature.

Conclusion

The explicit themes highlight the steps taken by researchers to understand what is salient about the critical care experience for those who have been critically ill. Future research exploring the whole illness-recovery trajectory and the way personal meaning contributes to understanding life experiences is justified.

Introduction

Critical illness, where single or multiple organ failure, necessitates admission to an ICU (intensive care unit) is the focus of this paper. Critical care is a modern speciality where the application of high technology medicine and specialist personnel concentrated in a single geographical area are key features. This application means that patients now survive critical illnesses that they would have succumbed to in previous decades (Vincent et al., 2010). These welcome developments create a new challenge for nursing internationally; to deliver care that takes account of how patients experience critical illness and how they understand these experiences in terms of personal meaning (Madjar and Walton, 1999). It is argued here that care and communication can be more meaningfully delivered through understanding the way patients experience and understand their experience of illness (Benner and Wrubel, 1989). There is, for example, increasing evidence of the association between post traumatic stress disorder and patients’ experience of critical illness (Jones et al., 2001, Jones et al., 2006, Schelling et al., 1998). For nurses to know what provokes anxiety in patients, and to understand the impact of pain and the consequences of physical restraint on psychological recovery are just some of the possibilities for linking understanding patient experience with care and communication.

Critical illness is clearly a significant life event and an important cause of suffering and long-term physical and psychological morbidity. Much of the research in this area has focussed upon clinical care aimed at improving survival and the quality of life for survivors and on the physiology, therapeutics and the economics of critical illness and critical care (Vincent et al., 2010).

There is an emerging body of international qualitative literature on the patient experience of critical illness. No attempts have so far been made to explore this literature as a whole, through structured analysis, to establish the themes associated with the experience of critical illness. This paper comprises a critical review of this literature and thereby intends to inform critical care nursing practice.

Section snippets

Aims

To critically review the literature in order to explore: ‘What is known about how patients experience and understanding their experience of critical illness?’

This question was asked in order to provide a broad empirical base and framework for future study in this area as part of a doctoral thesis by one of the authors (LRC).

Design

The review was influenced by the process of systematic review described by Hemingway and Brereton (2009) (see Table 1). Systematic reviews have in recent years increasingly

Transformations of perception: unreal experiences and dreams

Some studies focussed specifically on this element of the informants’ experience (Granberg et al., 1998, Granberg et al., 1999, Magarey and McCutcheon, 2005, Papathanassoglou and Patiraki, 2003). In other studies it emerged as a salient theme in the informants’ experience (Adamson et al., 2004, Green, 1996, Hafsteindittir, 1996, Hofhuis, 2008, Holland et al., 1997, Jablonski, 1994, Jones et al., 2003, Laitinen, 1996, Lee et al., 2009, Maddox et al., 2001, McKinney and Deeny, 2002, Minton and

Discussion

The great diversity in the studies, their focus, design, frame of reference, data collection and sampling mean that this is far from a unified and consistent body of literature. Nevertheless, the studies reviewed represent the steps taken by researchers to understand and they clearly demonstrate an expansion in this knowledge over the period 1967–2011 across several continents. This diversity has to be borne in mind when considering the relevance of the findings in specific settings and in time

Conclusion

This paper has outlined a critical review and synthesis of the qualitative research literature that explores first hand experiences of critical illness. The aim was to describe the common themes associated with the experience of critical illness and consider how these inform patients understanding.

Some patients clearly have significant recall of their critical illness and stay in the ICU. Common themes amongst these recalled experiences have been distilled in this review. However, analysis of

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