Intensive and Critical Care Nursing (2015) 31, 171—178
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The experience of communication difficulties in critically ill patients in and beyond intensive care: Findings from a larger phenomenological study Agness C. Tembo a,b,∗, Isabel Higgins c, Vicki Parker d a
University of Newcastle, School of Nursing and Midwifery, Faculty of Health and Medicine, Callaghan Campus, Newcastle, NSW 2308, Australia b Newcastle Private Hospital, Look Out Road, New Lambton, NSW 2305, Australia c Professor of Nursing University of Newcastle, School of Nursing and Midwifery, Faculty of Health and Medicine, Callaghan Campus, Newcastle, NSW 2308, Australia d Professor of Nursing University of New England, Armidale, NSW 2351, Australia Accepted 20 October 2014
KEYWORDS Critical illness; Intensive care; Mechanical ventilation; Daily sedation interruption, Communication difficulties
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.
∗ Corresponding author at: University of Newcastle, School of Nursing and Midwifery, Faculty of Health and Medicine, Callaghan Campus, Newcastle, NSW 2308, Australia. Tel.: +61 4 03 5644125; fax: +61 2 49216301.
http://dx.doi.org/10.1016/j.iccn.2014.10.004 0964-3397/© 2014 Elsevier Ltd. All rights reserved.
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A.C. Tembo et al. 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. © 2014 Elsevier Ltd. All rights reserved.
Implications for Clinical Practice • Greater effort is needed to find better and more effective ways of communicating with critically ill mechanically ventilated patients. • It is important to establish effective communication for the ICU patients as that is their way of relating with others and of being in the world. • Although the importance of and the need for more models of communication have been extensively recommended elsewhere (Happ, 2000; AlmerudÖsterberg, 2010) more use of communication aids such as charts, communication boards and writing pads could improve communication (Beraldo, 2009) • Routine assessment by a speech therapist of individual patients’ communication needs before leaving ICU and beyond would help inform restorative functional activities and provision of appropriate communication aids. • Nurses’ communication skills could be improved through ongoing education and practice development activities. This would be especially useful for new graduates who may be inexperienced in communicating with intubated patients (Parker, 1997). • Technological solutions such as computer generated voice devices (LifeVoiceTM ) are needed as they have proved beneficial elsewhere (Beraldo, 2009).
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.
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 ICU. Their aim was to explore and expose patients’ experiences of acute confusion, disorientation, wakefulness, dreams and nightmares during and after their stay in ICU. Granberg et al. (1999) found that communication difficulties were associated with difficult thought processes that resulted in patients failing to find the right words to communicate. In addition, the authors found that nurses were not patient enough to wait for the patients to find the right words to express themselves. Communication difficulties consequently resulted in patients failing to share horrible delusional experiences with the nurses because the nurses were too busy to listen. The study further revealed that patients became frustrated and angry at their spouse and the nursing staff for not understanding what they were saying. Granberg et al.’s (1999) study provides insight that communication difficulties can lead to feelings of loneliness, resentment, feelings of fear, vulnerability, agitation, anger, delirium and violence. Follow-up after ICU to establish ongoing problems and change in initial recall was a strength of this study. Granberg et al. (1999) interviewed participants on the ward and in their homes four to eight weeks later. They did not report on-going communication difficulties post discharge. Evidence showing the use and benefit of communication assistive devices is anecdotal. This is evidenced by a study conducted by Happ et al. (2011) in the two ICUs in the USA. Happ et al. (2011) conducted a non-interventional
The experience of communication difficulties in critically ill patients in and beyond intensive care descriptive observational study from a larger clinical trial that investigated communication between nurses and patients in medical and cardiothoracic surgical ICUs. Their aim was to describe communication interactions, methods, assistive techniques between nurses and non-speaking critically ill patients. The authors randomly selected 10 nurses (five from each ICU) and 30 awake nonspeaking (intubated) adult critically ill patients (15 from each ICU). Happ et al. video recorded observations of interactions between nurses and non-speaking critically ill patients in ICU. The authors assessed the frequency, communication methods, quality; assistive communication techniques and asked patients to rate the ease of communication. The patients in Happ et al.’s study reported 40% communication with nurses as somehow extremely difficult. Although nurses initiated most of the conversations, only a third of communication about pain was successful. Of noteworthy in this study is that in spite of the availability of communication assistive devices, nurses hardly used them. Although Happ et al.’s study was small, it adds a very important dimension to the subject of communication difficulties in non-speaking critically ill patients in ICU as it highlights the availability of and inability to utilise assistive devices. Happ et al. (2011) attributed this problem to the absence of staff education systems for communication with mechanically ventilated critically ill patients. Their observation was consistent with earlier studies (Happ, 2001; Happ et al., 2006; Happ et al., 2004). In an interpretive phenomenological study conducted by Caroll (2007) in the United States of America, 19 mechanically ventilated patients described their experience of being voiceless as being trapped in a silent, slow world. Carroll’s participants were all tracheostomised for a period of between one and half weeks to nine years and were aged between 43 and 82 years, had had extubations and reintubations before and most of them were non-vocal for 24 hours a day. Further they were required to be well enough to maintain oxygen saturation of 92% and above to withstand the interview, to be alert and orientated and able to use communication devices such as the communication board, writing, speaking valves, typing and mouthing words. Carroll conducted the first interview through lip reading (she is a trained and experienced lip reader) and clarified the messages by repeating the patients’ mouthed words back to them verbatim. The second interviews were vocal as some of the patients had regained their voice. The aim of the second interviews was to compare the experience of communication while being without a voice and being with a voice. The author found that the silent slow world of being without a voice rendered the patients restricted, powerless, frustrated and incomplete. Carroll reported that patients felt like an integral part of their body was cut off. They were not understood when they tried to communicate and failed to connect with others. Some participants felt they were treated inhumanely and nurses were too busy to stop and listen to them as they struggled to be heard. This finding is consistent with Donnelly and Wiechula (2006), Foster (2009), Happ (2001), Happ et al. (2004) and Happ et al. (2006, 2011) where participants described negative attitudes of nurses. The finding that patients expected consistent nursing care that was reliable was similar to Foster’s (2009) and Donnelly and Wiechula’s (2006) studies. Despite finding ways to cope, Carroll’s participants felt uncertainty
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that emanated from their loss of control, dependency on technology and powerlessness. This finding is consistent with Bergbom-Engberg and Haljamae (1988), who found that communication difficulties heightened the experience of uncertainty in mechanically ventilated patients and Löf et al. (2006) whose participants described having no voice to communicate as being without power to fight for their rights. Carroll’s study shows how fundamental speech and language are to human existence. Mechanical ventilation requires that patients be sedated in order to cope with the discomfort resulting from not being able to breathe for oneself. Being sedated, along with other possible physiological problems may result in disturbances of consciousness. This paper disseminates the findings about communication difficulties from a larger study (Tembo, 2012; Tembo et al., 2013) that examined the experience of critically ill patients in and beyond ICU in the context of daily sedation interruption (DSI).
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, 2013).
Research question The research question was ‘‘what was it like to be critically ill in ICU?’’
Methods Research design This study used a qualitative design guided by hermeneutic phenomenology as the research methodology (Tembo et al., 2012, 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, 2013).
Setting The study was conducted in a 16 bed ICU unit, which provides critical care for infants and adults with injuries, illnesses and following major interventional surgery, of a regional tertiary referral hospital in NSW in Australia (Tembo, 2012; Tembo et al., 2012, 2013).
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Recruitment of participants Potential participants were approached and informed about the study by a third party i.e. the nursing unit manager of the ICU and senior nurses. Any patient aged 18 years and over who was critically ill, mechanically ventilated and had undergone daily sedation interruption for at least 48 hours, could read and speak English and was not cognitively impaired was approached to participate in the study (Tembo et al., 2012, 2013). Table 1 below shows the description and demographic data of the participants. Pseudonyms were used to protect the participants’ identity (Tembo, 2012; Tembo et al., 2012, 2013).
Data collection In keeping with phenomenology, data collection involved face to face in-depth interviews with participants at two weeks after discharge from ICU and six to eleven months later. An interview guide was used with open ended questions designed to explore the experiences of ICU and beyond. Twelve participants were recruited and four of our participants were interviewed only once; two of them declined the subsequent interview, one could not be interviewed due to ill health and one could not be contacted. Interviews were conducted in participants’ homes or place of preference where privacy, safety and comfort were ensured. Interviews were between 30 minutes to an hour and forty-five minutes. Interviews were audio recorded and transcribed for analysis (Tembo, 2012; Tembo et al., 2012, 2013).
Data analysis Data analysis was conducted through highlighting of phrases and sentences that were exemplars of the lived experience of critical illness in ICU (Van Manen, 1990). Data analysis began as soon as data collection commenced. Analysing individual transcripts facilitated the researcher to guide the subsequent interviews while keeping in mind the original research question. A ‘‘parts and whole’’ process of highlighting phrases and sentences compared and contrasted
Table 1
across the transcripts and identified recurrent ideas and themes from individual transcripts. Emergent themes and subthemes allowed the researcher to demonstrate and reveal various differences, contradictions and tensions that characterised the participants’ experiences. Linguistic data was then transformed into phenomenological sensitive text through writing, reflecting and rewriting (Tembo, 2012; Tembo et al., 2012, 2013).
Credibility of the study Credibility of the study was achieved by approaching research from a presuppositionless perspective without fixed or predetermined procedures and engaging in a process of constant reflection on the phenomenon of concern (Tembo, 2012; Tembo et al., 2012, 2013). From the outset of the study researchers identified their assumptions relating to the study, reflected and kept them in check throughout the data collection and data analysis. Reflexivity is evident in the way the researcher conducted the data collection and analysis in this study (Tembo, 2012; Tembo et al., 2012, 2013).
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, 2013). The subthemes described in this paper are described in preceding publications (Tembo, 2012; Tembo et al., 2012, 2013).
Being imprisoned But that tube in my throat that was shocking. I can still feel it at the back of my throat although it’s not there now, I could still feel it there, but even just the thought of it. . .//. . .I couldn’t talk and I couldn’t move
Summary of demographic and other relevant data.
Participant
Age
Reason for admission
LOS in ICU (days)
Period of mechanical ventilation (days)
Keith Jason George Rosie Ian Moira Alex Kate Eric Maggie Liam Monika
76 69 58 34 56 76 65 60 20 23 71 41
Cardiac event Haemothorax Chest infection Severe metabolic acidosis Metabolic diabetic keto acidosis Triple Vessel CABG Aortic bifemoral bypass Cardiac arrest. Aspiration pneumonitis Traumatic chest injury Status epilepticus Major abdominal surgery Motor vehicle accident
36 4 4 3 6 10 9 13 6 6 3 6
27 3 3 2 5 8 5 11 5 4 2 4
The experience of communication difficulties in critically ill patients in and beyond intensive care . . .//. . .they had tied my arms to the bed. . .//. . .It was like a prison very scary Monika 1st Int. ‘Being imprisoned’ highlights the participants’ dislocation and isolation from their familiar environment and their inability to move or express themselves during their wakeful period of critical illness in ICU. Reflecting on their experience, participants likened the restrictive nature of the treatment and care given to them in ICU and the ICU environment to ‘‘Being imprisoned’’. Participants described being unable to speak or move; being ‘imprisoned’ by their critical illness; the presence of the ETT tube which meant they could not vocalise or talk; they were often physically tied to the bed with restraints and the effects of the medications meant that they could not communicate using the written word. They described their experience as frightening. When I went to talk. . .I just couldn’t talk. And I thought, ‘what’s happened to my throat,’ like it is like someone’s taken your voice off you. And that was the frightening part because I couldn’t relate to anybody. When I went to write, I couldn’t my hands were too weak I could only scribble. . .pretty frightening, because the questions you want to ask: what happened? What happened to me? What am I doing here? How did I get here? George 1st Int.
Being voiceless Being voiceless was associated with severance from the lived other. Some participants described being annoyed and frustrated by their inability to communicate while others felt isolated. They felt trapped in their dysfunctional body. Keith described losing the meaning of being voiceless, as losing control and being powerless: I couldn’t talk, which was unfortunate, I had no voice and was just you know, what I wanted, trying to get my feelings across, but it was difficult. I knew what they were saying, but I couldn’t respond, Body movements and gestures. . . It was difficult. Knew what the daughter was saying: knew what the wife was saying, but it didn’t mean a great deal to me because I couldn’t respond in any way . . . I was very frustrated. Keith 1st Int. Others felt they were at the mercy of the ICU staff who had saved them and were afraid to pull out the tube so they could talk. Ian put it this way: They had that tube down my throat. . .//. I could not express myself. . .//. . . I guess you’re at their mercy because they’ve got you plugged into all their equipment and they’ve just saved your life so you’ve got to do as you’re told. So if they don’t want you to turn over, then you don’t turn over because they’re obviously not doing it just to be spiteful, so um you just put up with it. Ian
Being trapped Being trapped represents the participants’ experience of their ‘‘disabled’’ post ICU self and their struggle to regain a
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sense of their previous self/identity. Their voice was lost and so was their identity. They felt dislocated and disconnected from their familiar self and others. Sounding distraught, eyes filled with tears, Kate put it this way: I’ve still got a croaky voice, apparently that’s from the tubes and I don’t know how long that’s going to be before I get my voice back. Well some of them the people that were looking after me in intensive care, they said I’m lucky to be alive, but it might take six months or more for my voice to come back. I just got to go with the flow. That’s all you can do, isn’t it? Kate 1st Int. Others were trapped in a body with an unreliable voice. George said: Now and then my voice goes and I get very hoarse. . .//. . .I can go alright but if I talk too much, my voice starts to go very croaky. . .//. . .But my voice has never really come back really clear. That’s really hoarse type thing. . .//. . .It is strange. George 1st Int.
Waiting for the familiar and reliable voice Waiting for the familiar and reliable voice illustrates the participants’ experience of living with a different voice that could not even be relied upon and waiting for their familiar voice to come back. For most of them, their voices were hoarse and at times reduced to a whisper. They felt strange and lost: I am still waiting . . . Now and then my voice goes and I get very hoarse. . . . I can go alright but if I talk too much, my voice starts to go very croaky . . . But my voice has never really come back really clear. That’s really hoarse type thing . . . It is strange. George 1st Int. Participants described most of their post hospital time at least up to the time they were interviewed, as ‘‘being in limbo’’ not knowing when their anticipation of their normal and reliable voice would end. That was succinctly described by Keith: ‘‘So there we are-in limbo. Oh, it is annoying. You’re talking softly and people can’t understand or hear you. You’ve got to sort of repeat yourself and you know that it’s not your normal voice and I’ll get that one day. They say its three to four months (oh God!) but it is so annoying for yourself because you haven’t got your normal voice; you can’t talk normal to people and they can’t understand you a lot of the times . . . That makes you become frustrated. . . Give me time. I’ll talk properly, one day//Hopefully, one day too. I’ll be free.’’ Keith 1st Int.
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;
176 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 are gaps in research and evidently, clinical practice that need to be explored in order to change the experience of critical illness in ICU and beyond for the better (Tembo, 2012; Tembo et al., 2012, 2013). Similarly, verbal imprisonment resulting in relational disruption has continued despite the attempt to keep patients awake in ICU through the practice of DSI (Tembo, 2012; Tembo et al., 2012, 2013). This study’s participants’ reports of inability to communicate with their families in ICU have been highlighted before (Capuzzo et al., 2010; Happ et al., 2006; Löf et al., 2008). This study’s finding that communication difficulties are associated with fear, anxiety and vulnerability in critically ill patients in ICU is consistent with an earlier study (Löf et al., 2008). This study’s findings along with the previous studies (Capuzzo et al., 2010; Löf et al., 2008) show that the current interventions to help patients communicate during their critical illness are insufficient. The voice is not only a means of communication but also an identity, the finding of continued communication difficulties emanating from loss or change of voice in this study is concerning because it robs people of their coherence and certainty in the world; and contributes to their continued altered way of existence as they anticipate to regain their voice and as such, their identity (Tembo, 2012; Tembo et al., 2012, 2013). The finding of being without a voice in this study is supported by other studies (Löf et al., 2008; Parker, 1997) in which participants described being unable to talk (Löf et al., 2008; Parker, 1997). The participants in this study described ‘being unable to talk’ evoked feelings of fear and a strong presence of death. Although the participants in this study attempted to free themselves from restraints and tubes and in the process became agitated, uncooperative and profoundly fearful, they did not become aggressive towards the staff. This finding is different from an earlier study in which participants physically fought the ICU staff (Parker, 1997). This is not surprising as the array of ICU equipment, is strange and exclusionary (Tembo, 2012; Tembo et al., 2012). Its restrictive nature (Parker, 1997) emphasises imprisonment for the people (Tembo, 2012; Tembo et al., 2012, 2013). However, it is not known whether it is the technology or its mode of application that evokes this experience. Nevertheless, the strangeness of the technology particularly when it is perceived as a foreign adjunct to one’s body such as the ETT which stops people from communicating is distressing and imprisoning (Tembo, 2012; Tembo et al., 2012, 2013). Feelings of imprisonment and powerlessness (loss of control) due to failure to communicate can perpetuate forced dependency and ‘‘capitulation’’ as evidenced in this study by Liam who said ‘‘I just had put up with it and lie still because I was afraid that if I became obnoxious I would be knocked out again’’ (Tembo, 2012; Tembo et al., 2012). This kind of helplessness can evoke feelings of degradation where patients feel like objects (Löf et al., 2008; Parker, 1997). This study has shown that critical illness and ICU hospitalisation impact the long term experiences of patients. In
A.C. Tembo et al.
Aggression Feeling Hopeless
Feeling Objecfied
Loss of Control
frustraon Communica on Difficules lonliness
Heightened sense of death
Feeling of Uncertainty
Anger Fear
Figure 1
Consequences of communication difficulties.
addition communication difficulties are not only confined to the ICU environment. People continue to suffer from communication difficulties up to eleven months after ICU (Tembo, 2012; Tembo et al., 2012). What is lacking are effective systematic models of care that can provide continued care and support for critical illness ICU survivors. The need to develop models of care with guidelines that incorporate follow up care and ongoing support is urgent, at least in the Australian context. Explanation and legitimation of critical illness survivorship needs to be included in routine care beginning in ICU and following through to services such as ICU follow up clinics and outreach models of care (Tembo, 2012; Tembo et al., 2012, 2013). Health professionals need to consider the impact of various practices and procedures on the wellbeing of patients, not just in the short term but in the long term. In this case nurses and doctors need to learn to communicate effectively with intubated patients. Similarly every effort to reduce the distress emanating from the ETT that binds and imprisons critically ill patients in ICU needs to be made to promote a humane experience in ICU (Tembo, 2012; Tembo et al., 2012, 2013). The failure of advanced technology and innovations in ICU practices lies in the increasing number of critical illness ICU survivors with negative sequelae that is placing a burden on the survivors, families and the health care system (Tembo, 2012; Tembo et al., 2012, 2013). Hence models of care across the critical illness trajectory that include follow up pathways, including physical and particularly speech therapy need to be established. Additionally community programmes such as support groups for critical illness survivors which may help them to actualise their new identity are needed (Tembo, 2012; Tembo et al., 2012, 2013). The figure above highlights the profound consequences of communication difficulties patients experience in ICU and beyond (Fig. 1).
Implications for education More education and awareness of communication with patients with communication difficulties needs to be developed. Intensivists, nurses, general practitioners and
The experience of communication difficulties in critically ill patients in and beyond intensive care other allied health professionals including family and other care givers in the community often have very limited knowledge of the impact of communication difficulties arising from technology such as the ETT in critical illness survivors. Such knowledge and awareness will empower all stakeholders to transition critical illness and ICU survivors from acute settings to the community and improving the quality of life for survivors (Tembo, 2012; Tembo et al., 2012, 2013).
Implications for research Researchers need to turn their attention to strategies that examine methods and processes that can reduce the impact of communication difficulties, particularly the longer term impact of the experience. Most importantly research and funding is needed to increase awareness of critical illness and ICU survivorship sequelae of continued communication difficulties and facilitate a better survivorship experience of critical illness beyond ICU (Needham et al., 2011). The findings about continued loss or changed voices call for more qualitative research particularly phenomenological research that would provide more understanding and insight into this kind of lived experience and what it means for those who go through it (Tembo, 2012; Tembo et al., 2012).
Strengths and limitations of the study The philosophical and methodological lens of hermeneutic phenomenological inquiry is a strength which enabled the researcher to elucidate the importance of human experience with such reverberation that it aims to inform ICU ethical practice of the readers. The limitation of the study lies in the single centre and small number of participants. However, since the aim of phenomenology is to describe and find meaning in a particular experience, this could be viewed as strength. In addition, the findings of the study could have been influenced by the way the researcher conducted the analysis.
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 beyond in the context of DSI. Although this was a single centre study in the Australian context, it serves to stimulate further interest, discussion and desire to improve patient outcomes in ICU through practice and research at local, national and international levels. Because this is a phenomenological study, it is hoped that it has challenged clinicians to treat patients as individuals with unique and ongoing needs resulting from their critical illness and ICU hospitalisation (Tembo, 2012; Tembo et al., 2012).
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Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/iccn
The experience of communication difficulties in critically ill patients in and beyond intensive care: Findings from a larger phenomenological study Agness C. Tembo a,b,∗, Isabel Higgins c, Vicki Parker d a
University of Newcastle, School of Nursing and Midwifery, Faculty of Health and Medicine, Callaghan Campus, Newcastle, NSW 2308, Australia b Newcastle Private Hospital, Look Out Road, New Lambton, NSW 2305, Australia c Professor of Nursing University of Newcastle, School of Nursing and Midwifery, Faculty of Health and Medicine, Callaghan Campus, Newcastle, NSW 2308, Australia d Professor of Nursing University of New England, Armidale, NSW 2351, Australia Accepted 20 October 2014
KEYWORDS Critical illness; Intensive care; Mechanical ventilation; Daily sedation interruption, Communication difficulties
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.
∗ Corresponding author at: University of Newcastle, School of Nursing and Midwifery, Faculty of Health and Medicine, Callaghan Campus, Newcastle, NSW 2308, Australia. Tel.: +61 4 03 5644125; fax: +61 2 49216301.
http://dx.doi.org/10.1016/j.iccn.2014.10.004 0964-3397/© 2014 Elsevier Ltd. All rights reserved.
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A.C. Tembo et al. 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. © 2014 Elsevier Ltd. All rights reserved.
Implications for Clinical Practice • Greater effort is needed to find better and more effective ways of communicating with critically ill mechanically ventilated patients. • It is important to establish effective communication for the ICU patients as that is their way of relating with others and of being in the world. • Although the importance of and the need for more models of communication have been extensively recommended elsewhere (Happ, 2000; AlmerudÖsterberg, 2010) more use of communication aids such as charts, communication boards and writing pads could improve communication (Beraldo, 2009) • Routine assessment by a speech therapist of individual patients’ communication needs before leaving ICU and beyond would help inform restorative functional activities and provision of appropriate communication aids. • Nurses’ communication skills could be improved through ongoing education and practice development activities. This would be especially useful for new graduates who may be inexperienced in communicating with intubated patients (Parker, 1997). • Technological solutions such as computer generated voice devices (LifeVoiceTM ) are needed as they have proved beneficial elsewhere (Beraldo, 2009).
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.
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 ICU. Their aim was to explore and expose patients’ experiences of acute confusion, disorientation, wakefulness, dreams and nightmares during and after their stay in ICU. Granberg et al. (1999) found that communication difficulties were associated with difficult thought processes that resulted in patients failing to find the right words to communicate. In addition, the authors found that nurses were not patient enough to wait for the patients to find the right words to express themselves. Communication difficulties consequently resulted in patients failing to share horrible delusional experiences with the nurses because the nurses were too busy to listen. The study further revealed that patients became frustrated and angry at their spouse and the nursing staff for not understanding what they were saying. Granberg et al.’s (1999) study provides insight that communication difficulties can lead to feelings of loneliness, resentment, feelings of fear, vulnerability, agitation, anger, delirium and violence. Follow-up after ICU to establish ongoing problems and change in initial recall was a strength of this study. Granberg et al. (1999) interviewed participants on the ward and in their homes four to eight weeks later. They did not report on-going communication difficulties post discharge. Evidence showing the use and benefit of communication assistive devices is anecdotal. This is evidenced by a study conducted by Happ et al. (2011) in the two ICUs in the USA. Happ et al. (2011) conducted a non-interventional
The experience of communication difficulties in critically ill patients in and beyond intensive care descriptive observational study from a larger clinical trial that investigated communication between nurses and patients in medical and cardiothoracic surgical ICUs. Their aim was to describe communication interactions, methods, assistive techniques between nurses and non-speaking critically ill patients. The authors randomly selected 10 nurses (five from each ICU) and 30 awake nonspeaking (intubated) adult critically ill patients (15 from each ICU). Happ et al. video recorded observations of interactions between nurses and non-speaking critically ill patients in ICU. The authors assessed the frequency, communication methods, quality; assistive communication techniques and asked patients to rate the ease of communication. The patients in Happ et al.’s study reported 40% communication with nurses as somehow extremely difficult. Although nurses initiated most of the conversations, only a third of communication about pain was successful. Of noteworthy in this study is that in spite of the availability of communication assistive devices, nurses hardly used them. Although Happ et al.’s study was small, it adds a very important dimension to the subject of communication difficulties in non-speaking critically ill patients in ICU as it highlights the availability of and inability to utilise assistive devices. Happ et al. (2011) attributed this problem to the absence of staff education systems for communication with mechanically ventilated critically ill patients. Their observation was consistent with earlier studies (Happ, 2001; Happ et al., 2006; Happ et al., 2004). In an interpretive phenomenological study conducted by Caroll (2007) in the United States of America, 19 mechanically ventilated patients described their experience of being voiceless as being trapped in a silent, slow world. Carroll’s participants were all tracheostomised for a period of between one and half weeks to nine years and were aged between 43 and 82 years, had had extubations and reintubations before and most of them were non-vocal for 24 hours a day. Further they were required to be well enough to maintain oxygen saturation of 92% and above to withstand the interview, to be alert and orientated and able to use communication devices such as the communication board, writing, speaking valves, typing and mouthing words. Carroll conducted the first interview through lip reading (she is a trained and experienced lip reader) and clarified the messages by repeating the patients’ mouthed words back to them verbatim. The second interviews were vocal as some of the patients had regained their voice. The aim of the second interviews was to compare the experience of communication while being without a voice and being with a voice. The author found that the silent slow world of being without a voice rendered the patients restricted, powerless, frustrated and incomplete. Carroll reported that patients felt like an integral part of their body was cut off. They were not understood when they tried to communicate and failed to connect with others. Some participants felt they were treated inhumanely and nurses were too busy to stop and listen to them as they struggled to be heard. This finding is consistent with Donnelly and Wiechula (2006), Foster (2009), Happ (2001), Happ et al. (2004) and Happ et al. (2006, 2011) where participants described negative attitudes of nurses. The finding that patients expected consistent nursing care that was reliable was similar to Foster’s (2009) and Donnelly and Wiechula’s (2006) studies. Despite finding ways to cope, Carroll’s participants felt uncertainty
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that emanated from their loss of control, dependency on technology and powerlessness. This finding is consistent with Bergbom-Engberg and Haljamae (1988), who found that communication difficulties heightened the experience of uncertainty in mechanically ventilated patients and Löf et al. (2006) whose participants described having no voice to communicate as being without power to fight for their rights. Carroll’s study shows how fundamental speech and language are to human existence. Mechanical ventilation requires that patients be sedated in order to cope with the discomfort resulting from not being able to breathe for oneself. Being sedated, along with other possible physiological problems may result in disturbances of consciousness. This paper disseminates the findings about communication difficulties from a larger study (Tembo, 2012; Tembo et al., 2013) that examined the experience of critically ill patients in and beyond ICU in the context of daily sedation interruption (DSI).
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, 2013).
Research question The research question was ‘‘what was it like to be critically ill in ICU?’’
Methods Research design This study used a qualitative design guided by hermeneutic phenomenology as the research methodology (Tembo et al., 2012, 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, 2013).
Setting The study was conducted in a 16 bed ICU unit, which provides critical care for infants and adults with injuries, illnesses and following major interventional surgery, of a regional tertiary referral hospital in NSW in Australia (Tembo, 2012; Tembo et al., 2012, 2013).
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Recruitment of participants Potential participants were approached and informed about the study by a third party i.e. the nursing unit manager of the ICU and senior nurses. Any patient aged 18 years and over who was critically ill, mechanically ventilated and had undergone daily sedation interruption for at least 48 hours, could read and speak English and was not cognitively impaired was approached to participate in the study (Tembo et al., 2012, 2013). Table 1 below shows the description and demographic data of the participants. Pseudonyms were used to protect the participants’ identity (Tembo, 2012; Tembo et al., 2012, 2013).
Data collection In keeping with phenomenology, data collection involved face to face in-depth interviews with participants at two weeks after discharge from ICU and six to eleven months later. An interview guide was used with open ended questions designed to explore the experiences of ICU and beyond. Twelve participants were recruited and four of our participants were interviewed only once; two of them declined the subsequent interview, one could not be interviewed due to ill health and one could not be contacted. Interviews were conducted in participants’ homes or place of preference where privacy, safety and comfort were ensured. Interviews were between 30 minutes to an hour and forty-five minutes. Interviews were audio recorded and transcribed for analysis (Tembo, 2012; Tembo et al., 2012, 2013).
Data analysis Data analysis was conducted through highlighting of phrases and sentences that were exemplars of the lived experience of critical illness in ICU (Van Manen, 1990). Data analysis began as soon as data collection commenced. Analysing individual transcripts facilitated the researcher to guide the subsequent interviews while keeping in mind the original research question. A ‘‘parts and whole’’ process of highlighting phrases and sentences compared and contrasted
Table 1
across the transcripts and identified recurrent ideas and themes from individual transcripts. Emergent themes and subthemes allowed the researcher to demonstrate and reveal various differences, contradictions and tensions that characterised the participants’ experiences. Linguistic data was then transformed into phenomenological sensitive text through writing, reflecting and rewriting (Tembo, 2012; Tembo et al., 2012, 2013).
Credibility of the study Credibility of the study was achieved by approaching research from a presuppositionless perspective without fixed or predetermined procedures and engaging in a process of constant reflection on the phenomenon of concern (Tembo, 2012; Tembo et al., 2012, 2013). From the outset of the study researchers identified their assumptions relating to the study, reflected and kept them in check throughout the data collection and data analysis. Reflexivity is evident in the way the researcher conducted the data collection and analysis in this study (Tembo, 2012; Tembo et al., 2012, 2013).
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, 2013). The subthemes described in this paper are described in preceding publications (Tembo, 2012; Tembo et al., 2012, 2013).
Being imprisoned But that tube in my throat that was shocking. I can still feel it at the back of my throat although it’s not there now, I could still feel it there, but even just the thought of it. . .//. . .I couldn’t talk and I couldn’t move
Summary of demographic and other relevant data.
Participant
Age
Reason for admission
LOS in ICU (days)
Period of mechanical ventilation (days)
Keith Jason George Rosie Ian Moira Alex Kate Eric Maggie Liam Monika
76 69 58 34 56 76 65 60 20 23 71 41
Cardiac event Haemothorax Chest infection Severe metabolic acidosis Metabolic diabetic keto acidosis Triple Vessel CABG Aortic bifemoral bypass Cardiac arrest. Aspiration pneumonitis Traumatic chest injury Status epilepticus Major abdominal surgery Motor vehicle accident
36 4 4 3 6 10 9 13 6 6 3 6
27 3 3 2 5 8 5 11 5 4 2 4
The experience of communication difficulties in critically ill patients in and beyond intensive care . . .//. . .they had tied my arms to the bed. . .//. . .It was like a prison very scary Monika 1st Int. ‘Being imprisoned’ highlights the participants’ dislocation and isolation from their familiar environment and their inability to move or express themselves during their wakeful period of critical illness in ICU. Reflecting on their experience, participants likened the restrictive nature of the treatment and care given to them in ICU and the ICU environment to ‘‘Being imprisoned’’. Participants described being unable to speak or move; being ‘imprisoned’ by their critical illness; the presence of the ETT tube which meant they could not vocalise or talk; they were often physically tied to the bed with restraints and the effects of the medications meant that they could not communicate using the written word. They described their experience as frightening. When I went to talk. . .I just couldn’t talk. And I thought, ‘what’s happened to my throat,’ like it is like someone’s taken your voice off you. And that was the frightening part because I couldn’t relate to anybody. When I went to write, I couldn’t my hands were too weak I could only scribble. . .pretty frightening, because the questions you want to ask: what happened? What happened to me? What am I doing here? How did I get here? George 1st Int.
Being voiceless Being voiceless was associated with severance from the lived other. Some participants described being annoyed and frustrated by their inability to communicate while others felt isolated. They felt trapped in their dysfunctional body. Keith described losing the meaning of being voiceless, as losing control and being powerless: I couldn’t talk, which was unfortunate, I had no voice and was just you know, what I wanted, trying to get my feelings across, but it was difficult. I knew what they were saying, but I couldn’t respond, Body movements and gestures. . . It was difficult. Knew what the daughter was saying: knew what the wife was saying, but it didn’t mean a great deal to me because I couldn’t respond in any way . . . I was very frustrated. Keith 1st Int. Others felt they were at the mercy of the ICU staff who had saved them and were afraid to pull out the tube so they could talk. Ian put it this way: They had that tube down my throat. . .//. I could not express myself. . .//. . . I guess you’re at their mercy because they’ve got you plugged into all their equipment and they’ve just saved your life so you’ve got to do as you’re told. So if they don’t want you to turn over, then you don’t turn over because they’re obviously not doing it just to be spiteful, so um you just put up with it. Ian
Being trapped Being trapped represents the participants’ experience of their ‘‘disabled’’ post ICU self and their struggle to regain a
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sense of their previous self/identity. Their voice was lost and so was their identity. They felt dislocated and disconnected from their familiar self and others. Sounding distraught, eyes filled with tears, Kate put it this way: I’ve still got a croaky voice, apparently that’s from the tubes and I don’t know how long that’s going to be before I get my voice back. Well some of them the people that were looking after me in intensive care, they said I’m lucky to be alive, but it might take six months or more for my voice to come back. I just got to go with the flow. That’s all you can do, isn’t it? Kate 1st Int. Others were trapped in a body with an unreliable voice. George said: Now and then my voice goes and I get very hoarse. . .//. . .I can go alright but if I talk too much, my voice starts to go very croaky. . .//. . .But my voice has never really come back really clear. That’s really hoarse type thing. . .//. . .It is strange. George 1st Int.
Waiting for the familiar and reliable voice Waiting for the familiar and reliable voice illustrates the participants’ experience of living with a different voice that could not even be relied upon and waiting for their familiar voice to come back. For most of them, their voices were hoarse and at times reduced to a whisper. They felt strange and lost: I am still waiting . . . Now and then my voice goes and I get very hoarse. . . . I can go alright but if I talk too much, my voice starts to go very croaky . . . But my voice has never really come back really clear. That’s really hoarse type thing . . . It is strange. George 1st Int. Participants described most of their post hospital time at least up to the time they were interviewed, as ‘‘being in limbo’’ not knowing when their anticipation of their normal and reliable voice would end. That was succinctly described by Keith: ‘‘So there we are-in limbo. Oh, it is annoying. You’re talking softly and people can’t understand or hear you. You’ve got to sort of repeat yourself and you know that it’s not your normal voice and I’ll get that one day. They say its three to four months (oh God!) but it is so annoying for yourself because you haven’t got your normal voice; you can’t talk normal to people and they can’t understand you a lot of the times . . . That makes you become frustrated. . . Give me time. I’ll talk properly, one day//Hopefully, one day too. I’ll be free.’’ Keith 1st Int.
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;
176 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 are gaps in research and evidently, clinical practice that need to be explored in order to change the experience of critical illness in ICU and beyond for the better (Tembo, 2012; Tembo et al., 2012, 2013). Similarly, verbal imprisonment resulting in relational disruption has continued despite the attempt to keep patients awake in ICU through the practice of DSI (Tembo, 2012; Tembo et al., 2012, 2013). This study’s participants’ reports of inability to communicate with their families in ICU have been highlighted before (Capuzzo et al., 2010; Happ et al., 2006; Löf et al., 2008). This study’s finding that communication difficulties are associated with fear, anxiety and vulnerability in critically ill patients in ICU is consistent with an earlier study (Löf et al., 2008). This study’s findings along with the previous studies (Capuzzo et al., 2010; Löf et al., 2008) show that the current interventions to help patients communicate during their critical illness are insufficient. The voice is not only a means of communication but also an identity, the finding of continued communication difficulties emanating from loss or change of voice in this study is concerning because it robs people of their coherence and certainty in the world; and contributes to their continued altered way of existence as they anticipate to regain their voice and as such, their identity (Tembo, 2012; Tembo et al., 2012, 2013). The finding of being without a voice in this study is supported by other studies (Löf et al., 2008; Parker, 1997) in which participants described being unable to talk (Löf et al., 2008; Parker, 1997). The participants in this study described ‘being unable to talk’ evoked feelings of fear and a strong presence of death. Although the participants in this study attempted to free themselves from restraints and tubes and in the process became agitated, uncooperative and profoundly fearful, they did not become aggressive towards the staff. This finding is different from an earlier study in which participants physically fought the ICU staff (Parker, 1997). This is not surprising as the array of ICU equipment, is strange and exclusionary (Tembo, 2012; Tembo et al., 2012). Its restrictive nature (Parker, 1997) emphasises imprisonment for the people (Tembo, 2012; Tembo et al., 2012, 2013). However, it is not known whether it is the technology or its mode of application that evokes this experience. Nevertheless, the strangeness of the technology particularly when it is perceived as a foreign adjunct to one’s body such as the ETT which stops people from communicating is distressing and imprisoning (Tembo, 2012; Tembo et al., 2012, 2013). Feelings of imprisonment and powerlessness (loss of control) due to failure to communicate can perpetuate forced dependency and ‘‘capitulation’’ as evidenced in this study by Liam who said ‘‘I just had put up with it and lie still because I was afraid that if I became obnoxious I would be knocked out again’’ (Tembo, 2012; Tembo et al., 2012). This kind of helplessness can evoke feelings of degradation where patients feel like objects (Löf et al., 2008; Parker, 1997). This study has shown that critical illness and ICU hospitalisation impact the long term experiences of patients. In
A.C. Tembo et al.
Aggression Feeling Hopeless
Feeling Objecfied
Loss of Control
frustraon Communica on Difficules lonliness
Heightened sense of death
Feeling of Uncertainty
Anger Fear
Figure 1
Consequences of communication difficulties.
addition communication difficulties are not only confined to the ICU environment. People continue to suffer from communication difficulties up to eleven months after ICU (Tembo, 2012; Tembo et al., 2012). What is lacking are effective systematic models of care that can provide continued care and support for critical illness ICU survivors. The need to develop models of care with guidelines that incorporate follow up care and ongoing support is urgent, at least in the Australian context. Explanation and legitimation of critical illness survivorship needs to be included in routine care beginning in ICU and following through to services such as ICU follow up clinics and outreach models of care (Tembo, 2012; Tembo et al., 2012, 2013). Health professionals need to consider the impact of various practices and procedures on the wellbeing of patients, not just in the short term but in the long term. In this case nurses and doctors need to learn to communicate effectively with intubated patients. Similarly every effort to reduce the distress emanating from the ETT that binds and imprisons critically ill patients in ICU needs to be made to promote a humane experience in ICU (Tembo, 2012; Tembo et al., 2012, 2013). The failure of advanced technology and innovations in ICU practices lies in the increasing number of critical illness ICU survivors with negative sequelae that is placing a burden on the survivors, families and the health care system (Tembo, 2012; Tembo et al., 2012, 2013). Hence models of care across the critical illness trajectory that include follow up pathways, including physical and particularly speech therapy need to be established. Additionally community programmes such as support groups for critical illness survivors which may help them to actualise their new identity are needed (Tembo, 2012; Tembo et al., 2012, 2013). The figure above highlights the profound consequences of communication difficulties patients experience in ICU and beyond (Fig. 1).
Implications for education More education and awareness of communication with patients with communication difficulties needs to be developed. Intensivists, nurses, general practitioners and
The experience of communication difficulties in critically ill patients in and beyond intensive care other allied health professionals including family and other care givers in the community often have very limited knowledge of the impact of communication difficulties arising from technology such as the ETT in critical illness survivors. Such knowledge and awareness will empower all stakeholders to transition critical illness and ICU survivors from acute settings to the community and improving the quality of life for survivors (Tembo, 2012; Tembo et al., 2012, 2013).
Implications for research Researchers need to turn their attention to strategies that examine methods and processes that can reduce the impact of communication difficulties, particularly the longer term impact of the experience. Most importantly research and funding is needed to increase awareness of critical illness and ICU survivorship sequelae of continued communication difficulties and facilitate a better survivorship experience of critical illness beyond ICU (Needham et al., 2011). The findings about continued loss or changed voices call for more qualitative research particularly phenomenological research that would provide more understanding and insight into this kind of lived experience and what it means for those who go through it (Tembo, 2012; Tembo et al., 2012).
Strengths and limitations of the study The philosophical and methodological lens of hermeneutic phenomenological inquiry is a strength which enabled the researcher to elucidate the importance of human experience with such reverberation that it aims to inform ICU ethical practice of the readers. The limitation of the study lies in the single centre and small number of participants. However, since the aim of phenomenology is to describe and find meaning in a particular experience, this could be viewed as strength. In addition, the findings of the study could have been influenced by the way the researcher conducted the analysis.
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 beyond in the context of DSI. Although this was a single centre study in the Australian context, it serves to stimulate further interest, discussion and desire to improve patient outcomes in ICU through practice and research at local, national and international levels. Because this is a phenomenological study, it is hoped that it has challenged clinicians to treat patients as individuals with unique and ongoing needs resulting from their critical illness and ICU hospitalisation (Tembo, 2012; Tembo et al., 2012).
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