Original article
Re-visiting the ICU: Experiences of follow-up visits to an ICU after discharge: A qualitative study

https://doi.org/10.1016/j.iccn.2008.03.002Get rights and content

Summary

The aim of this study is to describe how people who have been critically ill, and their close relatives experience a post-discharge, follow-up visit to the intensive care unit (ICU) that provided the care. There is a lack of studies from such a standpoint. The study design is qualitative. A total of 18 adults participated; nine had been critically ill and nine were close relatives, all made a post-discharge follow-up visit to an ICU in the northern part of Sweden. The study data was collected through personal interviews, conducted after the follow-up visit, using a narrative approach. The data were then subjected to qualitative thematic content analysis which resulted in four themes: receiving strength from returning together; making sense of the critical-illness experience; feeling grateful to have survived and the possibility of improving the care. People who had been critically ill and close relatives felt that returning together was valuable. Meeting the staff, with whom participants felt they had developed a relationship, made it possible for them to express their gratitude for the treatment and nursing care received, and to suggest improvements. The interviews revealed that the follow-up visit was seen as an important way of learning what had happened and why during the period of critical illness.

Introduction

People affected by acute, severe illness often need to be cared for in an intensive care unit (ICU). Life changes in many ways during and after critical illness both for the person concerned and for their close relatives. People who have been critically ill and treated in an ICU commonly experience amnesia or fragmented memories of their time in the ICU (Jones et al., 1998). Follow-up visits to ICUs, after discharge, for both those who were critically ill and their close relatives may be one way in which the former can recover the missing time and receive answers to questions (Griffiths and Jones, 2002). This study focuses on the experience of follow-up visits to an ICU from the perspective of adults who had been critically ill and their close relatives. The study is part of a qualitative concerning close close relatives in the context of critical care nursing.

Several studies (Adamson et al., 2004, Hafsteindóttir, 1996, Maddox et al., 2001, Russell, 1999) have described how people who have been critically ill in an ICU often suffer from nightmares and anxiety. Some can remember their stay in the ICU, while others have only unpleasant fragmentary or delusional memories. Not knowing what happened during their time in the ICU is described as distressing. Johnson et al. (2006) demonstrated that people, when critically ill in the ICU, lost track of time and reality. They experienced disturbing hallucinations and nightmares and felt their bodies were unfamiliar and unreliable. This highlights how frightening the experience of intensive care can be and the importance of close relatives in making the ill person feel safe (Hupcey, 2000).

Hall-Smith et al. (1997) stated that people who had been critically ill in ICUs experienced vivid dreams, flashbacks, and stress in addition to profound tiredness and weakness. The factors that predispose a person to experience amnesia after critical illness have not been clearly evaluated. People who are critically ill usually receive sedatives and analgesics during artificial ventilation, and these drugs are likely to influence their memory (Jones et al., 1998, Jones et al., 2000). Several studies (Jones et al., 2001, Magarey and McCutcheon, 2005, Roberts and Chaboyer, 2004) show that loss and fragmentation of memory have the potential to cause long-term psychological problems after discharge from the ICU. To have a person critically ill in an ICU is also a difficult situation for close relatives as it means living in uncertainty hovering between hope and despair (Engström and Söderberg, 2004). Even when the critically ill person can leave the ICU, it is described as a time full of uncertainty and anxiety for close relatives (Mitchell et al., 2003) and for the ill person (Odell, 2000). When the ill person is discharged close relatives might also feel burdened by their impairment (Johnson et al., 2001).

There is a need to talk about the ICU experience and memory loss, otherwise recovery at home may be difficult both for the person who has been critically ill (Jones et al., 2003) and for their close relatives (Hall-Smith et al., 1997). According to Jones et al. (1998) both parties need the opportunity to talk about the illness and the time spent in the ICU with the staff who were involved in the care. Crocker (2003) suggests that people who have been critically ill need explanations and follow-up visits, after discharge, to the ICU to put their experiences into context. Returning to the ICU and meeting the staff again can also be valuable for close relatives (Engström and Söderberg, 2004). According to Griffiths and Jones (2002) follow-up visits to ICUs can improve the quality of recovery from critical illness. Other studies (Cutler et al., 2003, Corrigan et al., 2007, Löf et al., 2006) emphasise the necessity of some form of follow-up service for people who have been critically ill. Bäckman and Walther (2001) suggest that the narrative of the ill person's ICU stay in the form of a diary together with a follow-up visit to the ICU, might help them to understand their ICU stay and their illness.

In summary, we have found that studies concerning how people who have been critically ill, and their close relatives, experience a post-discharge follow-up visit to an ICU are lacking. The studies found suggest that such follow-up visits to an ICU can help people who have been critically ill to understand what has happened and to discuss their memories. However, these studies are mostly presented from the perspective of the staff. This study is presented from the perspective of people who have been critically ill and their close relatives. Incorporating the knowledge gained from their experiences will make it possible to meet the needs of people who are or have been critically ill and their close relatives.

The aim of this study was to describe post-discharge follow-up visits to an ICU as experienced by both people who had been critically ill and cared for in an ICU and their close relatives.

Section snippets

The post-discharge follow-up visit

The post-discharge follow-up visits were made during 2004–2006. One critical care nurse was responsible for planning the visits. The critical care nurse and the physician who were most involved with the critically ill person in the ICU were scheduled to participate in the follow-up visit with the person who had been critically ill and their close relatives, if any. A room was reserved for the visit where all could participate in peace and quiet. The participants were requested to bring their

Findings

The analysis of the interviews resulted in the following four themes: receiving strength from returning together, making sense of the critical-illness experience, feeling grateful to have survived and the possibility of improving the care. In the results the participants who were critically ill are referred to as the critically ill person/people. Participants who were close relatives of people who had been critically ill are referred to as close relative/relatives. When the result concerns both

Discussion

The aim of this study was to describe post-discharge follow-up visits to an ICU as experienced by people who had been critically ill and cared for in an ICU and their close relatives. The findings showed it was valuable to return together and to receive explanations for what had happened during the participant's stay in the ICU. Meeting the staff who had been mostly responsible for the care of the ill person offered them the chance to express their gratitude for the treatment and nursing care,

Conclusion

Nine people previously nursed and treated in an ICU and nine close relatives participated in this study. Research has previously suggested that post-discharge follow-up visits to ICUs are valuable for people who have been critically ill as they help them to understand what has happened and allow them to talk about their memories of their stay in the ICU. The results of this study agree with earlier findings. This study also shows the value of a diary for filling in memory gaps and comprehending

Acknowledgements

We are grateful to all those who participated in this study and to Annica Lidén for her work with the follow-up visits. We are also grateful to Mrs. Pat Shrimpton for revising the English version of the manuscript. The study was supported by grants from the Swedish association for nurse anaesthetist and intensive care, and from the Department of Health Science, Luleå University of Technology, Luleå, Sweden.

References (47)

  • L. Löf et al.

    Severely ill ICU patients recall of factual events and unreal experiences of hospital admission and ICU stay—3 and 12 months after discharge

    Intens Crit Care Nurs

    (2006)
  • M. Maddox et al.

    Psychosocial recovery following ICU: experiences and influences upon discharge to the community

    Intens Crit Care Nurs

    (2001)
  • J.M. Magarey et al.

    ‘Fishing with the dead’—Recall of memories from the ICU

    Intens Crit Care Nurs

    (2005)
  • M. Arman et al.

    The ‘little extra’ that alleviates suffering

    Nurs Ethics

    (2007)
  • L.A. Baxter

    Content analysis

  • C.G. Bäckman et al.

    Use of personal diary written on the ICU during critical illness

    Intens Care Med

    (2001)
  • M. Catanzaro

    Using qualitative analytic techniques

  • W. Chaboyer et al.

    Following the path of ICU survivors: a quality-improvement activity

    Nurs Crit Care

    (2003)
  • D. Combe

    The use of patient diaries in an intensive care unit

    Nurs Crit Care

    (2005)
  • C.A. Crocker

    multidisciplinary follow-up clinic after patients’ discharge from ITU

    Brit J Nurs

    (2003)
  • L. Cutler et al.

    Developing and evaluating critical care follow-up

    Nurs Crit Care

    (2003)
  • B. Downe-Wamboldt

    Content analysis: method, applications, and issues

    Health Care Women Int

    (1992)
  • A. Dreyer et al.

    Sedation of ventilated patients in intensive care units: relatives’ experiences

    J Adv Nurs

    (2008)
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