ORIGINAL ARTICLE
Memories of intensive care and experiences of survivors of a critical illness: an interview study

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Summary

Recovery from a critical illness can be a complex and protracted process. It is known that for some, health-related quality of life (HRQOL) does not return to pre-illness levels for many months, and in some disease processes this may be longer. This study was undertaken as part of a larger project examining the pain and health status of survivors of a critical illness. The aims of the qualitative aspect of the study were to examine the participants’ memories of intensive care and hospitalisation at 6 months post-discharge, and to explore the impact of the critical illness experience on their recovery. Purposive sampling was used to enable rich descriptions of the experience of recovery from those patients best able to articulate their experiences. Three common themes were found with our six participants: recollections, responses, and comfort/discomfort. Recovery from their critical illness continued to affect the participants and carers, some profoundly so. Better integration of services and continued support is required for survivors of a critical illness up to and beyond 6 months.

Introduction

Assessment of health-related quality of life (HRQOL) for survivors of a critical illness is now well established in the literature (Elliott, 1999, Heyland et al., 1998, Mendelsohn and Chelluri, 2003). Recent observational studies have examined health status for a variety of cohorts of intensive care unit (ICU) patients, including acute respiratory distress syndrome (ARDS) (Angus et al., 2001, Herridge, 2002, Schelling et al., 2000); sepsis (Heyland et al., 2000, Pettila et al., 2000, Wehler et al., 2003); and the elderly (Jandziol and Ridley, 2000, Mittermair and Muller, 2002, Udekwu et al., 2001). These studies indicated that HRQOL outcomes are commonly determined by a number of factors including age, pre-morbid status and severity of illness. Patients who have more severe illnesses whilst in ICU usually have longer recovery trajectories, with conditions such as ARDS or sepsis having a particularly slow return, if ever, to pre-condition status (Buckley et al., 2001, Quartin et al., 1997, Schelling et al., 1998).

Post-Traumatic Stress Disorder (PTSD) has also become a recent focus of attention in relation to illness (Tedstone and Tarrier, 2003), including the critically ill (Scragg et al., 2001). One study demonstrated that patients who had no factual recall of ICU but had delusional memories at 2 weeks post-discharge from ICU, scored highly for PTSD-related symptoms and panic attacks at 8 weeks, with only delusional memories retained over time (Jones et al., 2001). Patients who develop PTSD also describe a poorer HRQOL than patients who do not develop PTSD (Schelling et al., 1998).

Exploration of the experiences of individuals recovering from a critical illness using qualitative approaches is, however, more limited. Some qualitative studies have focussed on the patient’s experience of weaning from mechanical ventilation (Cook et al., 2001), but did not examine the recovery process post-ICU. Stein-Parbury and McKinley (2000) reviewed 26 studies that used either qualitative or quantitative approaches to examine patient experiences. From the several qualitative papers reviewed, it was noted that patients often had vivid recollections of their ICU experience. Negative experiences included pain, anxiety, sleeping problems and impaired cognitive functioning, while more positive experiences were associated with a sense of safety and security promoted primarily by nurses (Stein-Parbury and McKinley, 2000). This supported previous work by Hupcey (2000) and Green (1996) who described a range of positive and negative memories of ICU from patients either stable in ICU or 48 h post-ICU, with patients remembering in detail explanations and reassurances given by the ICU nursing staff (Green, 1996, Hupcey, 2000). In a triangulated study, Russell (2000) also found that patients had a feeling of safety whilst in the ICU, but, conversely, negative memories, such as inappropriate staff comments, continued to affect the participants up to 6 months post-ICU (Russell, 1999).

In a recent phenomenological study with eight participants, Papathanassoglou and Patiraki (2003) found transformations in perception, the lived-body, and in lived time and space as themes emerging in both conscious and dream experiences. Attitudes towards death were altered, and heightened spirituality was evident following the participants’ critical illness experiences (Papathanassoglou and Patiraki, 2003). In another phenomenological study, McKinney and Deeny (2002) explored, with six participants, the experience of transfer from ICU to a general ward. The emerging themes included a desire for normality; mixed feelings regarding transfer; feelings of despondency related to continuing physical complaints; differences between ICU and the ward; and the enormity of the ICU experience influencing post-transfer emotions. The authors recommended greater continuity of care for those recovering from critical illness (McKinney and Deeny, 2002).

A study similar to the aims of the current research examined the recovery period for five patients at 6 to 15 weeks following discharge from the ICU (Maddox et al., 2001). The major theme was described as ‘moving on’, with components of normalising life, return to usual routines, and leaving behind the ICU experience. The factors influencing recovery included individual attitudes, prior experiences, the ICU experience and support of family and friends. Community support was not commonly utilized, with participants having a negative perception of asking for professional help.

Clearly, the recovery process for survivors of a critical illness is an important but under-researched area, particularly from a qualitative perspective. Exploration of the impact of the intensive care experience, including ongoing memories for the patient, is only now emerging in the literature.

Section snippets

Methods

This study was undertaken as part of a larger project examining the pain and health status of survivors of a critical illness. The aims of the qualitative aspect of the study were to examine the participants’ memories of intensive care and hospitalisation at 6 months post-discharge, and to explore the impact of the critical illness experience on their recovery. Eligible participants were recruited following their discharge from a 12-bed general ICU in a tertiary referral hospital in Sydney,

Findings

Six participants who were discharged home after a critical illness completed interviews 6 months after their hospitalisation (see Table 1). Three of the participants had partners. All were given the opportunity to attend however only two were present at the time of the interview. The experience of the patient was the focus of the study. Comments from relatives reinforced the experiences of the participants. Patient details are described in Table 2.

The three themes that emerged from the

Conclusions

Clearly, the effects of surviving a critical illness are profound for many individuals and their carers. This exploratory study identified three themes in the experiences of survivors of a critical illness—recollections; responses; and comfort/discomfort. All of our participants demonstrated some form of residual physical or psychological problem from their chronic health condition and critical illness. These findings reinforce other quantitative studies (Hupcey, 2000, Maddox et al., 2001,

Acknowledgements

The transcription of interviews was supported by funds from the Faculty of Nursing, The University of Sydney, and the Pain Service, Prince of Wales Hospital.

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