The experience of communication difficulties in critically ill patients in and beyond intensive care: Findings from a larger phenomenological study

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Summary

Communication difficulties in intensive care units (ICU) with critically ill patients have been well documented for more than three decades. However, there is only a paucity of literature that has explored communication difficulties beyond the ICU environment. This paper discusses the experience of communication difficulties in critically ill patients in ICU and beyond as part of findings from a larger study that explored the lived experiences of critically ill patients in ICU in the context of daily sedation interruption (DSI).

The aim of the study was to describe the lived experience of people who experienced critical illness in ICU using a hermeneutic phenomenological approach in the DSI context. Twelve participants aged between 20 and 76 years with an ICU stay ranging from 3 to 36 days were recruited from a 16 bed ICU in a large regional referral hospital in New South Wales (NSW), Australia. Participants were intubated, mechanically ventilated and subjected to (DSI) during their critical illness in ICU. In-depth face to face interviews with participants were conducted at two weeks after discharge from ICU and at six to eleven months later. Interviews were audio taped and transcribed. Thematic analysis using van Manen's (1990) method was completed. The overarching theme; ‘Being in limbo’ and subthemes ‘Being disrupted’; ‘Being imprisoned’ and ‘Being trapped’ depict the main elements of the experience.

This paper discusses communication difficulties in critically ill patients as one of the main findings relating to the theme ‘Being trapped’. Participants’ reports of communication difficulties in ICU are similar to those reported by patients in other studies where DSI was not used. However, not many studies have reported ongoing communication difficulties after ICU hospitalisation. Recommendations are made for new models of care and support to mitigate critically ill patients’ communication concerns in ICU and for further research into the causes and treatment to benefit this group of patients. Most importantly, extra care is recommended not to damage vocal cords during intubation and cuff inflation in the course of mechanical ventilation.

Introduction

Studies that have examined the impact of technology and ventilation for patients have demonstrated the distressing nature of being ventilated, either through an endotracheal tube (ETT) or tracheostomy. Mechanically ventilated critically ill patients’ distress is associated partly with the inability to speak and communicate effectively with staff and family. In addition, communication difficulties are related to feelings of powerlessness and vulnerability resulting in frustration, anxiety and possibly delirium (Happ, 2001). Compounding factors have been linked to nurses’ busyness and inability to lip read and patients’ personality and inability to write (Happ, 2001).

Findings from previous research on communication difficulties in mechanically ventilated patients have led to the introduction of various communication assistive devices. However, their use and effectiveness remains to be established. Furthermore, the quest to improve patient experience and ICU outcomes have resulted in technological advancement and innovation in ICU practices such as new ventilators and daily sedation interruption (DSI). Reports that a more wakeful patient will be able to communicate and participate in decision making of their care (Mirski et al., 2010, Wunsch and Kress, 2009) have been cited. However, perceptions of patients about communication under such conditions have not been documented.

Section snippets

Background

Various phenomena have been associated with communication difficulties in mechanically ventilated critically ill patients. Granberg et al.’s (1999) seminal work found that many critically ill patients fail to communicate due to demanding nurses’ workload. The authors conducted a hermeneutic phenomenological study in Sweden which comprised nineteen participants who had been mechanically ventilated in ICU. The authors interviewed participants at one week and at eight weeks after discharge from

Aim of the study

The aim of the study reported here was to describe the lived experience of critical illness in ICU in the context of DSI and how it impacts the participants’ continued existence beyond ICU and hospitalisation. Some findings from the larger study have already been published before (Tembo et al., 2012, Tembo et al., 2013).

Research question

The research question was “what was it like to be critically ill in ICU?”

Research design

This study used a qualitative design guided by hermeneutic phenomenology as the research methodology (Tembo et al., 2012, Tembo et al., 2013).

Ethical considerations

Ethical approval was sought and granted in December, 2007 by the Research Ethics Committee where the study was undertaken. Potential participants were given both written and verbal information about the study (Tembo, 2012, Tembo et al., 2012, Tembo et al., 2013).

Setting

The study was conducted in a 16 bed ICU unit, which provides critical care for infants and

Findings

The overarching theme of the larger study was ‘Being in Limbo’ of which one of the major themes was ‘Being Imprisoned’. The major theme of ‘Being imprisoned’ was characterised by sub themes of ‘Being Voiceless’, ‘Being trapped’ and Waiting for the familiar and reliable voice (Tembo, 2012, Tembo et al., 2012, Tembo et al., 2013). The subthemes described in this paper are described in preceding publications (Tembo, 2012, Tembo et al., 2012, Tembo et al., 2013).

Discussion

Despite the use of DSI, people continue to experience communication difficulties and the devastating impact it has on them as they struggle to make themselves heard and understood (Almerud-Österberg, 2010, Almerud et al., 2007, Zeilani and Seymour, 2010). Most importantly, this study adds to the literature that communication difficulties continue long after ICU hospitalisation for some patients. This aspect of communication difficulties has not been extensively explored. This means that there

Conclusion

Communication difficulties continue to affect patients up to eleven months after ICU hospitalisation. This leaves the people with a loss of identity and feelings of being in limbo, not knowing when their voice will come back. This calls for further qualitative research into the experience of communication difficulties after ICU hospitalisation.

The main aim of this study was to explore and understand the experience of communication difficulties during critical illness and ICU hospitalisation and

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