Intensive and Critical Care Nursing
Volume 28, Issue 1 , Pages 6-15, February 2012

The lived experiences of adult intensive care patients who were conscious during mechanical ventilation: A phenomenological-hermeneutic study

  • Veronika Karlsson

      Affiliations

    • Institute of Health and Care Sciences at The Sahlgrenska Academy, University of Gothenburg, Box 457, SE 40530 Gothenburg, Sweden
    • Intensive Care Unit, Skaraborgssjukhus Skövde, SE-54185 Skövde, Sweden
    • Corresponding Author InformationCorresponding author at: Intensive Care Unit, Skaraborgs sjukhus, SE 54185 Skövde, Sweden.
    • ,
  • Ingegerd Bergbom

      Affiliations

    • Institute of Health and Care Sciences at The Sahlgrenska Academy, University of Gothenburg, Box 457, SE 40530 Gothenburg, Sweden
    • ,
  • Anna Forsberg

      Affiliations

    • Institute of Health and Care Sciences at The Sahlgrenska Academy, University of Gothenburg, Box 457, SE 40530 Gothenburg, Sweden
    • Department of Surgery, Sahlgrenska University Hospital, Gothenburg, Sweden

Accepted 12 November 2011.

Article Outline

Summary 

Aim

The aim of this study was to illuminate the lived experience of patients who were conscious during mechanical ventilation in an intensive care unit (ICU).

Method

Interviews with 12 patients assessed as being conscious during mechanical ventilation were conducted approximately one week after discharge from an ICU. The text was analysed using a phenomenological-hermeneutic method inspired by Ricoeur.

Results

Apart from breathlessness, voicelessness was considered the worst experience. The discomfort and pain caused by the tracheal tube was considerable. A feeling of being helpless, deserted and powerless because of their serious physical condition and inability to talk prompted the patients to strive for independence and recovery and made them willing to ‘flow with’ the treatment and care. Comments from the patients suggest that their suffering can be alleviated by communication, participation in care activities and companionship.

Conclusion

A patient's endurance whilst conscious during mechanical ventilation seems to be facilitated by the presence of nurses, who mediate hope and belief in recovery, strengthening the patient's will to fight for recovery and survival.

Keywords: Phenomenological hermeneutic, Mechanical ventilation, Lived experience, Conscious adult patient

 

Back to Article Outline

Introduction 

Mechanical ventilation (MV) of critically ill patients in intensive and critical care has usually been combined with sedation for their comfort. However, in recent years, light or no sedation has become common practice in MV of patients suffering from respiratory distress (Samuelsson, 2006a), whereby they are conscious after MV has been started. Strøm et al. (2010) found that patients who had light or no sedation spent a shorter time in the ICU, a shorter time on MV and had a better medical status. There is, however, a lack of knowledge about how patients experience consciousness, when receiving light sedation and whether this increases suffering. From the perspective of nursing care, this treatment regime makes new demands on ICU nurses, who must develop their communication skills in order to meet and provide care based on patients’ needs and assist visiting relatives in communicating with the patient. In a longitudinal study by Karlsson and Forsberg (2008), patients who were conscious during MV reported experiences of discomfort several years after their stay in the ICU but little knowledge has been developed concerning such experiences closer in time to the actual event.

Back to Article Outline

Background 

In 2004, Adamson et al. (2004) concluded that the recovery process of survivors of a critical illness is an important but under-researched area, particularly from a qualitative perspective. In the same year, Johnson (2004) revealed that findings from studies conducted prior to 1990 indicate that patients experienced communication difficulties, insufficient explanation of procedures by nurses, restriction on activities, anxiety and panic, nightmares and hallucinations in addition to feelings of insecurity and helplessness. Later, Davies (2007), Löf et al. (2006), Ringdal et al. (2009) and Samuelsson et al. (2006b) reported similar experiences. Granberg et al. (1998), who interviewed patients about a week after discharge, found that they experienced extreme instability, fear and a feeling of inner tension. Stein-Parbury and McKinley (2002) published an extensive review of 26 studies aimed at exploring patients’ experiences, noting that patients often had vivid recollections of their ICU stay. Negative experiences included pain, anxiety, sleep problems and impaired cognitive functioning, whilst positive experiences were promoted primarily by nurses and associated with a sense of safety and security.

According to Granja et al. (2005), 93 of the patients in their study described the ICU as calm and friendly. Amongst those who could recall their time on a mechanical ventilator, 46% reported discomfort due to being unable to talk, 39% were bothered by secretions (Bergbom and Haljamäe, 1989) and 46% found the tracheal tube uncomfortable (Rotondi et al., 2002, Samuelsson et al., 2007). The common denominator in most of these studies is that it is unclear to what extent the patients involved were sedated whilst on MV.

In the study by Karlsson and Forsberg (2008), all patients who participated in the study were during MV, assessed to have a level of sedation of 2, 3 or 4 on the Motor Activity Assessment Scale (MAAS) (Devlin et al., 1999), which means that the patients were calm and cooperative (De Jonghe et al., 2000, Devlin et al., 1999). A description of MAAS level according to Devlin et al. (1999) is presented in Box 1.

Box 1. Score, description and definition of MAAS according to Devlin et al. (1999).

MAAS 0. Unresponsive. Does not move with noxious stimulus.a

MAAS 1. Responsive only to noxious stimuli. Open eyes or raises eyebrows or turns head towards stimulus or moves limbs with noxious stimulus.a

MAAS 2. Responsive to touch or name. Opens eyes or raises eyebrows or turns head towards stimulus or moves limbs when touched or name is loudly spoken.

MAAS 3. Calm and cooperative. No external stimulus is required to elicit movement and patient is adjusting sheets or clothes purposefully and follows commands.

MAAS 4. Restless and cooperative. No external stimulus is required to elicit movement and patient is picking at sheets or tubes or uncovering self and follows commands.

MAAS 5. Agitated. No external stimulus is required to elicit movement and attempting to sit up or moves limbs out of bed and does not consistently follow commands (e.g., will lie down when asked but soon reverts back to attempts to sit up or move limbs out of bed).

MAAS 6. Dangerously agitated, uncooperative. No external stimulus is required to elicit movement and patient is pulling at tubes or catheters or thrashing side to side or striking at staff or trying to climb out of bed and does not calm down when asked.

aNoxious stimulus, suctioning or 5secs of vigorous orbital, sternal, or nail bed pressure.

There were also notes about patients sitting beside their bed, watching television or reading a book during MV. Some form of communication took place by means of an ABC-board or gestures. In conclusion, their study revealed that patients’ experience of care could be summarised in categories such as memories, mastering the situation and individual consequences. However, there was a long delay before the follow-up, implying a risk of recall bias. Therefore it was important to capture patients’ experiences approximately one week after discharge from the ICU. Such recollections of their experiences, whilst being conscious, could reveal new insights of how to care for the patients. The aim of this study was to illuminate the lived experience of patients who were conscious during mechanical ventilation in an intensive care unit.

Back to Article Outline

Methods 

A phenomenological-hermeneutic approach based on Ricoeur's philosophy was chosen, as the focus was the patients’ lived experience of being conscious during MV as well as the interpretation and understanding of what it meant for patients to be conscious whilst receiving this form of treatment.

Setting 

The study was carried out in an eight-bed ICU in a Swedish county hospital, designed for both children and adults suffering from medical and surgical conditions as well as trauma. In 2008, a total of 789 patients of all age groups were treated in the unit, of whom 419 underwent invasive MV.

Participants 

Patients (n=15) who met the following inclusion criteria were invited to participate in this study:

•MAAS score of 3–4 (Devlin et al., 1999) for a continuous 18-hour period during his/her time on the ventilator,

•aged 18 years or over

•able to speak and understand Swedish

•according to the records, able to sit beside the bed, read books, write using a pencil and paper, mime or nod when communicating.

In this follow-up study, patients who met the inclusion criteria were included consecutively, irrespective of diagnosis or sex, of whom one declined, one died and one withdrew from the interview due to lack of energy. Therefore, the twelve participants comprised three women and nine men, aged between 23 and 88 years (mean 58 years). Having being provided with written and oral information, potential participants were asked to take part in the study by the nurses who cared for them. After agreeing to participate, they were approached by the researcher who repeated the same information before obtaining their informed written consent. An audio-taped interview was conducted about one week after discharge from the ICU. Table 1 presents information about the patients’ condition during their stay in the ICU and during the data collection.

Table 1. Patient diagnosis, time spent in ICU and time and place of interview.
DiagnosisTime in ICU/daysTime and place of interview
Tracheotomy/probe in ward
Epiglottitis, throat abscess12Day 7 after discharge from the ICU. Interviewed in hospital ward. Tracheostomy still in place at time of interview.
Stroke8Day 6 after discharge from the ICU. Interviewed in hospital ward.
Probe on ward
Myelitis6Day 8 after discharge from the ICU. Interviewed in hospital ward.
Epiglottitis2.5Day 7 after discharge from the ICU. Interviewed in the ICU.
Difficulty with intubation in relation to surgery2Day 7 after discharge from the ICU. Interviewed in hospital ward.
Laryngeal cancer2Day 7 after discharge from the ICU. Interviewed in the ICU. Tracheostomy still in place at time of interview.
Multi-trauma9Day 4 after discharge from the ICU. Interviewed in hospital ward.
Carotid surgery10Day 5 after discharge from the ICU. Interviewed in hospital ward.
Carotid surgery5Day 7 after discharge from the ICU. Interviewed at home.
Airway obstruction4Day 11 after discharge from the ICU. Interviewed in the ICU
Multi-trauma4Day 4 after discharge from the ICU. Interviewed in hospital ward. Tracheostomy still in place at time of interview.
Sepsis, pneumonia, pneumothorax23Day 7 after discharge from the ICU. Interviewed in hospital ward.

Data collection 

The patients were first interviewed whilst undergoing MV and had a rating of MAAS 3–4, as part of a prospective study exploring patients’ experiences and how they communicated during MV. These interviews were video recorded and will be presented in another paper (Karlsson et al., 2011). When the video recordings were made, eight patients were not sedated, whilst one had only Fentanyl®. In the other four cases, one had both Propofol® and Fentanyl®, one had Morphine®, one had Fentanyl® and Clonidin® and one had Propofol® and Clonidin®. The interviews were conducted following discharge from the ICU. Three of the patients were interviewed four days after discharge from the ICU, because one of them was to be transferred to another hospital, and two were going home and wanted to do the interview in order to avoid having to return to the hospital. All interviews (with the exception of one) took place at the hospital, either in the ICU or on the ward where the patients were treated. At the time of the interview, no patients were under sedation. They were asked to describe their experiences of the period when they were conscious and undergoing MV. The interviews took the form of a dialogue and began with the following question: “Could you please tell me about your experiences of being conscious during mechanical ventilator treatment?” Follow-up questions: “Can you please explain about...?” or “Can you please describe...?” were posed for clarification and to avoid misunderstanding. Moreover, questions from the first interview which was conducted during the actual mechanical ventilator treatment) were repeated in order to gain a deeper understanding of the patients’ experiences. The interviews lasted between 7 and 45minutes (mean 23minutes).

Ethical consideration 

This study was approved by the Ethics Research Committee (No. 552-07) after a thorough risk–benefit analysis (World Medical Association 2008). The patients were invited to participate in the study approximately one week after discharge from the ICU. They were provided with written information and informed written consent was obtained. The benefits were considered to outweigh any risk of violation of dignity, integrity and well-being, as the patients were approached with respect and reminded of their right to withdraw from the study at stage. Patients assessed by the researchers as having little or no energy to talk about their experiences during MV in the ICU were offered the opportunity to cancel the interview immediately, one patient accepted.

Data analysis 

A phenomenological-hermeneutic method inspired by Ricoeur, 1976, Ricoeur, 1992 and developed by Lindseth and Norberg (2004) was applied. The method comprises three steps: (1) naïve reading, in which all researchers read the interviews several times to become familiar with the text and reach an initial understanding, (2) structural analysis, in which the initial understanding was tested separately by each researcher. In this phase meaning units were identified, brought together and grouped into themes and subthemes; and (3) comprehensive understanding, in which the text was read again, and the researchers together reflected on the themes pertaining to the meaning of being conscious during MV. The interpretation was guided by the researchers’ pre-understanding based on their extensive experience of working with and teaching about intensive nursing care, as well as their knowledge of previous researches in the field. This pre-understanding was constantly reflected upon and reconsidered during the data analysis and interpretation process, maintaining a critical stance and integrity through continuous self-reflection and self-scrutiny to ensure that the interpretations were valid and grounded in the data (Whittemore et al., 2001). Every theme in the structural analysis was questioned in relation to the pre-understanding of each researcher in an attempt to be as open as possible to the phenomenon under investigation. The comprehensive understanding was also scrutinised during the final interpretation.

Rigour 

To ensure trustworthiness, which requires transparency in the research process as well as the final interpretation, the Lincoln and Guba framework (Lincoln and Guba, 1985) was used. To enhance the credibility of the study and prevent retrospective distortion or misinterpretation, the patients’ statements were followed up by new questions. The researchers attempted to avoid misunderstandings by constantly asking: “Have I understood this correctly?” The researchers were familiar with the context and could, therefore, enter deeply into the patients’ descriptions and experiences, but this pre-understanding was also a risk. Therefore all interpretations were “examined” and the most probable was chosen. Quotations were also presented to allow the reader to judge the reliability of the researchers’ interpretation, its closeness to the text and whether it accurately illustrated the patients’ experienced and illuminates their lived world. With regard to dependability, the data collection was performed in an ordinary ICU setting and did not involve any conditions that could prevent replication.

Conformability (neutrality), which is comparable to reliability, was achieved by describing the different steps in the analysis process and how the various themes in the structural analysis were created, based on quotations. The transcribed text was rich and extensive. The researchers were eager to ensure a non-judgemental attitude towards statements and exhibit impartiality. With regard to conformability, the full interview transcript was read by all the researchers and only statements relevant to the aim of the study were included in the final analysis. The variations in patients’ age, sex and diagnosis as well as the fact that the interviews were conducted with all participants at a specific time after discharge make it possible to transfer the findings to other patients who were conscious during MV under similar circumstances. A text can be understood and interpreted in many ways, but the three researchers agreed that the final interpretation was the most reliable, although alternative interpretations were considered.

Back to Article Outline

Results 

The findings emerged from two thematic structural analyses aimed at comprehensively capturing the experienced meaning of being conscious during MV. The basic assumption was that a patient's mere presence in the ICU implied a state of suffering due to the highly technological and very intense treatment and nursing care activities. The first naïve understanding of the interview text revealed that being conscious during MV involved being in a state of dependency in a negative sense, painfully aware of one's helplessness, with no opportunity to act upon one's own will and perceived ability. It also meant experiencing discomfort and being unable to talk, with limited opportunities to communicate, which had to be endured. The first structural analysis covering the meaning of being in a state of dependency is presented in Table 2. The findings are illuminated in the text by quotations from the patients (P), each of whom is identified by a number.

Table 2. The first thematic structural analysis of dependency.
Sub-themeMain theme
Being breathlessBeing dependent on mechanical ventilation to survive
Depending on the nurses’ ability to notice mucus in the tube
Being helpless and in need of assistanceBeing forced to submit to the will of others
Violation of privacy and integrity
Having to rely on others
Being voiceless
Being unable to choose communication methodsHaving to submit to other people's willingness to understand non-verbal communication
Being understood by one's relatives
Being understood by some of the nurses
Feeling afraidBeing out of control
Being unable to control time, position or space
Feeling strange and unable to rest
Having to endure painful suctioning of the tubeHaving to endure
Not being trusted
Not being trusted
Wanting to be sedated/unconscious
Finding the strength to endure uncaring encounters

Being dependent on mechanical ventilation to survive 

The patients experienced an overall sense of being breathless. They were aware that the mechanical ventilator was a life-saver. They had a strong desire to breathe by themselves, but simply could not manage to fill their lungs with air. This awareness led to a sense of panic, which in some cases lasted throughout the ICU stay. Patients had to rely on the ability of the nurses to notice mucus in the tube and some staff members were better than others at suctioning. Several patients described experiencing fear, such as fear of death or that the ventilator would stop functioning.

“So obviously, I was a little worried... that it would pack up...Yes, it was like ‘if this packs up…so will I!…Or… I’ll stop breathing… (P:4)”.

Being forced to submit to the will of others 

The patients felt as weak and helpless as small children. They required assistance with their most basic needs – getting air, suctioning mucus, personal hygiene, going to the toilet and the nurses supplying them with a pencil and a notepad for communication purposes. Toileting in bed meant loss of personal dignity and they realised the necessity of leaving themselves completely in the hands of someone else, with all the dependency that this entailed.

“Weak in my body. And…(brief hesitation)…I felt like a child, you know, who doesn’t think too much, can’t do anything; I can’t pee by myself, poo by myself, I can’t do anything (P:3)”.

Because of the patients’ condition and dependency on constant monitoring, staff members were always present. Although the patients wanted to communicate with their friends and family in private, the constant staff presence made it problematic. Due to the lack of privacy, the patients refrained from communicating with their relatives rather than pass on their message in the presence of staff.

“Well, there were some things I didn’t want to say because I didn’t want them to overhear…And in such cases I preferred to tell them later (P:13)”.

The patients were unable to influence the decision about whether or not to sedate them. Sometimes, when they were too exhausted, they wanted sedation but did not receive it. Being unable to communicate their wishes resulted in feelings of powerlessness. Had they been given the choice between consciousness and sedation, eight would have chosen consciousness, three sedation and one had no opinion. The reasons for choosing consciousness were that they wanted to be aware of what was going on and that it was good for the body and their muscles.

Having to submit to other people's willingness to understand non-verbal communication 

Apart from breathlessness, voicelessness was considered the worst.

“I thought the worst part was that I couldn’t say my name (P:1)”.

Being unable to utter a single word or say one's name was considered particularly difficult, as patients lost energy and experienced despair, irritation and anger when they were not understood. It meant not being identified as a person, nor cared for as a human being with an individual personality. When communicating, patients learnt to find words that were easy for the nurses to understand when mouthed. In general, the patients found that older and more experienced carers understood them more easily than less experienced staff members.

Being out of control 

One important factor that prevented the patients from acting according to their own will was their inability to control time, position or space, which was linked to a perception that they were not functioning properly. Time seemed to drift and they were not aware of whether it was day or night, nor did they know when they would be rid of the tube. Some thought that life had ended and as time passed so slowly they lost track of it. Lack of information about what was being planned and what was going to happen evoked a feeling of powerlessness, whilst not knowing what to expect as a sign of recovery or deterioration caused feelings of uncertainty.

“But at the same time I was glad that it happened so quickly, because I thought I’d have it (endotracheal tube) for a long time. I didn’t think I’d be rid of it on Tuesday – when they came I wasn’t prepared. I thought they would anaesthetise me again to take it out. That's what I believed, and I thought that the person who took care of me right at the start said that too. I thought she said ‘then we’ll sedate you again’. But they didn’t (P:4)”.

The patients had to face strange feelings, dreams and bodily sensations, which meant that they were unable to rest or sleep. They experienced being half awake and half asleep. They could only sleep for short periods and were disturbed by alarms, other patients who required care or because they themselves needed their airways suctioned. The patients felt a desire to do something about the situation but were held captive in a passive state of helplessness by the poor condition of their bodies, their fatigue, nausea, pain, dizziness and hiccups.

“Then the alarm sounded from somebody on a respirator, they [carers] had to run and there were too few people on duty at night. You heard it immediately, then I waited until I heard them come and turn it off. They asked if I needed anything and then went off. I went back to sleep and then the alarm sounded again. So it was disturbing. What could I do? (P:1)”.

Having to endure 

The discomfort caused by the tracheal tube was very painful and beyond the patients’ control. They simply had to endure. The suctioning of secretion was experienced as very painful and unpleasant, causing feelings of panic for some but not everyone.

“Some of them go to work on it [tube] like it was some bloody sewer that had to be cleared, yeah. And they pushed it all down until it was completely blocked. And I couldn’t breathe because of it either… and I had to breathe then so… Some of them were really good…so it was…in my experience, they had very different ways of managing the suction. Yes, absolutely! (P:6)”.

Being conscious also meant that patients had to endure unpleasant encounters with staff whom they experienced as disrespectful and lacking in trust, for example, the nurses did not listen to what the patients tried to communicate. Thus the patients considered that they were not believed and that their dignity was violated. They also felt insecure when they needed immediate assistance and that they were fighting for their own integrity.

“…I couldn’t get to sleep once, but that battle axe [nurse] said I had. She said “Yes you have been asleep” (P:8)”.

The second structural analysis 

The structural thematic analysis revealed that the patients experienced dependency, but there were also expressions in the text about ways of striving for independency. Therefore, a second thematic analysis was conducted. The essence of this movement was captured in three themes: Experiencing a sense of control, Being viewed as a participant and companion and Yearning for independence (Table 3).

Table 3. The second thematic structural analysis of the movement towards recovery.
Sub-themeMain theme
Being sure that the brain is intact and workingExperiencing a sense of control
Knowing what will happen
Handling procedures and technical devices by oneself
Feeling better and struggling
Being seen as an important personBeing viewed as a participant and companion
Being aware of the attentiveness of relatives
Feeling safe and cared for
Assisting in caring activities
Longing to be free of machines and tubesYearning for independence
Longing for flavours/tastes
Longing to be able to walk and for the presence of friends and family
Longing for home and a ‘normal’ life

Experiencing a sense of control 

Some patients perceived that being conscious meant and confirmed that their brain was undamaged. Being aware of their surroundings meant control in the sense that they could apprehend what was happening and obtain information. Patients who were able to handle some procedures and technical devices themselves also perceived control as a part of the recovery process.

“And it was a good thing they hadn’t taken out more, so to speak, like out of my head or something, so that I might have suffered some sort of brain damage. Because they can’t wake you up then like they did with me (P:13)”.

Being viewed as a participant and companion 

Being conscious opened up several opportunities for participation, such as communication with relatives and nurses. For example, participating meant that time passed more quickly for the patients, as they were able to perform some nursing procedures themselves to help the nurses, such as suctioning secretion and deactivating the alarm. Participation and companionship with the nurses made them feel less unwell and they started to believe in recovery. They reported that participation and companionship helped them to fight for survival and overcome tears, sadness and sorrow. Turning to and relying on a religious spirit or power banished thoughts about possible death. Patients also interpreted their ability to sit up in bed or on a chair as clear proof of not only physical but also overall improvement.

“And it was nice that they respected it and seemed to think it was good that I did it because then they understood… that they didn’t have to … apply suction… but that I had managed it myself! (P:10)”.

Participation and companionship also led to patients feeling that they were seen as important individuals, allowing them to feel safe and cared for. They were well supervised by staff and felt that the nurses were in control, providing safety through their constant presence, often with a sense of continuity. Sensing the presence of relatives meant comfort and support in mastering consciousness and the various treatment procedures. Relatives were an important reminder of their value as individuals. Looking at photos and remembering their ordinary lives affirmed this. These visits also made patients feel understood and relatives could assist in communication with staff.

“I knew that Dad could see what I wanted… so I just needed to point or start writing a word and he understood… (P:7)”.

Yearning for independence 

The patients dreaded being totally dependent and wanted to recover as quickly as possible. First they yearned for recovery, to be free of all the machines, tubes and wires, after which they longed for various tastes, water, beer, tea or something to eat. They longed to be able to get up and walk, to take care of themselves and finally return to ordinary life at home.

“Down there [ICU]…you felt a bit like…well, like a vegetable, not being able to manage yourself …and of course at home I’m…there I look after myself and manage everything… I wanted to go home again! (P:10)”.

Comprehensive understanding 

Being conscious during MV was interpreted as being fully and painfully aware of one's complete dependence on others and subject to their wishes and actions, which constitutes an infringement of freedom. Treatment, whilst conscious, also meant that their condition was serious but not hopeless, as they did not need to be sedated. However, it also meant awareness of being completely dependent on technology and the staff for survival, since the latter were able to detect life-threatening changes and circumstances. The serious and critical condition of the patients meant that they were unable to look after themselves or even talk. Being in this predicament implied enduring until physical recovery made it possible to regain control. Enduring was facilitated when the patients were encouraged and allowed to participate and conduct some nursing activities, but also treated as a member of the team. This made them feel less dependent and all signs of independence were fundamental to having faith in recovery. The visits and presence of friends and family nurtured the patients’ desire to get well and believe that recovery was possible, which included regaining their freedom and independence. Removal of the tube and being able to breathe without a ventilator served as tangible confirmation. When relatives and nurses talked about life outside the ICU, they strengthened patients’ longing to return home to a normal life, which in turn increased their hope of survival.

Back to Article Outline

Discussion 

To our knowledge, no previous study has aimed to fully capture patients’ lived experiences of consciousness during MV as assessed by MAAS, close in time to the actual event. This study reports the inside perspective of patients’ painful awareness of dependence on technical devices and unfamiliar individuals for their survival, communication and basic needs. The results contribute new and different aspects, even if the findings are in many ways similar to those previously reported (Granberg et al., 1998, Johnson, 2004, Karlsson and Forsberg, 2008). The new insights concern the patients’ striving to regain independence and the assistance they require and need of caring.

Caring for conscious patients demands the nurses’ constant, full presence and will to cooperate and interact with them in order to understand their dependence and vulnerability. Nurses can support patients by building up their confidence and belief in recovery (Wang et al., 2009). This presupposes that the nurse shows a genuine interest in the patients and their situation. When nurses were attentive and cared for their patients in this way, the patients felt secure (Karlsson and Forsberg, 2008). Being attentive also presupposes ongoing communication, so that appropriate nursing care actions can be conducted and followed up. This puts new and different demands on nurses compared to caring for unconscious patients. It can be understood that the conscious patients’ need of caring is an act of ‘standing by’, in the sense of being attentive, present and prepared to assist and look after the patient in all situations. It also means that nurses must express a desire to involve patients and share experiences in a caring partnership, but must also be watchful and prepared to act. However, the patients should feel free to decide to what extent they want to participate, if at all. Providing this choice is a way for the nurse to confirm the patient's dignity as an equal and important human being.

However, several critical questions must be raised in relation to this result. Are intensive and critical care nurses willing to practise the art of ‘standing by’ in a demanding and highly technological environment and what happens if they are not? In what way is it possible to actually involve the critically ill patient in decision-making and ICU activities? There may be a fine line between a challenge and too much pressure on the vulnerable patient. Consciousness during MV requires a thorough assessment of the patient's abilities as well as of the level of ambition amongst staff for creating a partnership or involving patients in caring activities. Standing by includes faculty or capacity to assess and estimate what is appropriate from both the patient's perspective and from a professional point of view.

In the literature, Gallant et al. (2002) discuss the concept of partnership between nurse and patient and define it using terms such as ‘participation’, ‘mutuality’, ‘collaboration’ and ‘cooperation’. A partnership builds on the conviction of both parties that all individuals are of equal value but that each person has unique needs. Fridh et al. (2009) used the concept “piloting”, which describes how relatives were piloted when the patient was dying in the ICU. ‘Piloting’ means that staff members look after the family and friends of patients with warmth, sensitivity and professionalism during all stages of care, providing information about the patient's condition until his/her death. “Piloting” thus is focussing on patient's relatives and friends, whilst ‘standing by’ is focussing on patients. ‘Standing by’ is a caring action aimed at stimulating patients to use their inner strength to fight for survival, but also alleviating the suffering arising from being totally dependent on others and technical equipment.

In our study it was promising to note that the nurses’ proximity, willingness to facilitate communication and get to know the patients reduced their feeling of dependence. Wang et al. (2009) suggest that once patients understand why they are connected to the equipment and that the technology is vital for their survival, they accept the situation by displaying helplessness and acceptance. In a study by Carroll (2007), where the patients were non-vocal for at least two hours per day, experiences of powerlessness, the frustration of being voiceless, trapped in a silent world, dependence and the need to find communication strategies were described, similar to those in the present study.

The quality of the relationship was critical and a prerequisite for communication, but communication techniques were also important. Communication allows relationships to be formed, in addition to building confidence and trust in the nurses (Foster, 2010). This is essential if patients are invited or expected to participate in various activities. Patak et al. (2004) described the opposite: how nurses’ unobservant, inattentive and impersonal behaviour made patients feel misunderstood and prevented them from communicating. According to Foster (2010), trust in nurses also meant that they were seen as competent and skilful. In view of this knowledge, it is vital that ICU nurses are educated in various communication techniques with focus on the conscious patient during MV. One cannot expect this skill to be naturally inherent in every nurse nor does the high tech environment facilitate communication.

Being unable to utter a single word or say one's name was considered particularly difficult, leading to patients feeling they had lost their personality and identity, as was also supported by Carroll (2007). Being voiceless was interpreted as meaning that patients lost energy and despaired when not understood, resulting in a feeling of being isolated in a glass bubble. Similar findings have been reported by Briscoe and Woodgate (2010) and Engström and Söderberg (2007), underlining the seriousness of being voiceless.

In our study, lack of privacy was another obstacle to communication between patients and their relatives, as the patients said it prevented them from bringing up sensitive subjects. This seemed to increase feelings of loneliness, inhibit their desire to share private feelings and thoughts and obstructed proximity. Fridh et al. (2009) found that proximity demanded privacy, a view also expressed by relatives visiting the patient (Karlsson et al., 2010). Dreyer and Nortvedt (2007) reported similar findings but also the distress patients felt when nurses stopped their attempts to communicate with relatives. The presence of other patients and relatives may also limit a patient's desire to share sensitive issues, feelings and thoughts with the nurse. Health care professionals must not underestimate the importance of privacy and balance this basic need against the necessity of monitoring, which might be adequately provided by the technical equipment.

Patients experienced a loss of control over themselves and their situation because of the degree of physical dependence, which accords with findings in previous studies (Carroll, 2007, Magnus and Turkington, 2006, Patak et al., 2004). McKinley et al. (2002) reported that patients experienced fear, anxiety, insecurity and uncertainty when they did not know what was going to happen and when care was impersonal. They also found that patients could not recognise or interpret signs of change in their physical condition, but once they started to regain control over their body and its functions they developed belief and hope that they would survive and be restored to their former lives. Meijers and Gustafsson (2008) stated that providing information and involving the patient in making a daily plan were the most common activities used by ICU nurses to reinforce patient self-determination. Such activities probably help patients to experience companionship with their nurses and participate in their own care. A feeling of dependence and helplessness seems to evoke a yearning for independence. When independence and freedom are lost, their value become very real and there is a desire to regain them, which opens up new and creative ways of caring within nursing.

In summary, the worst experiences reported by the patients were the inability to breathe, which evoked a sense of panic and being voiceless. Submission to the will and actions of others was difficult to cope with and yearning for independence was also an important factor. Finally, nurses ‘standing by’ reduced feelings of dependence and isolation, thus strengthening belief in recovery.

Study limitations 

Patients’ lengths of stay, ages, medical diagnoses and conditions varied widely, as we wanted to capture variation. One limitation is that the patients came from the same hospital, implying that the results reflect only one medical and caring tradition of keeping the patients conscious during MV. However, it is not the medical treatment itself that is evaluated in this study, but the experienced meaning of being conscious during MV. We argue that these experiences might be transferrable and to some extent universal, regardless of the ICU setting. From an ethical point of view, patients may have felt obliged to participate in the study, since the nurses taking care of them had invited them. None of the patients were being cared for in the ICU at the time of the study, but they may nevertheless have felt a sense of dependence. Some interviews were very short and it can be questioned as to whether they were long enough to reveal the meaning of being conscious during MV. However, patients expressed and described their most important experiences, even if in some cases they related only one.

Back to Article Outline

Conclusion 

In conclusion, this study suggests that effective communication is essential, as the experience of being voiceless is particularly difficult to endure. Our findings also reveal that a lack of privacy constitutes a barrier to proximity and communication between patients and relatives. It is also evident that the caring act of ‘standing by’ is essential in stimulating patients to use their inner strength to fight for survival and regain independence. ‘Standing by’ means that nurses must have courage, willpower, knowledge and show personal and professional attentiveness in the care of these patients. The patients strive to regain independence and control and, in this process, companionship and fellowship with the nurses are vital. Therefore, standing by can be understood as an ontological presence, whereby hope and belief in recovery and health are mediated, strengthening the patients’ will to fight for recovery and survival.

Back to Article Outline

Contributions 

Study design: VK, IB, AF; data collection and analysis: VK, IB, AF; and manuscript preparation: VK, IB, AF.

Back to Article Outline

Conflict of interest 

None.

Back to Article Outline

Acknowledgements 

We are grateful to the patients who participated in this study and the ward management for giving us access to the study location. Financial support was obtained from the Intensive Care Unit, Skaraborg Hospital, Skövde and the Research and Development Center, Skaraborg Hospital and the Skaraborg Institute, Sweden.

Back to Article Outline

References 

  1. Adamson H, Murgo M, Boyle M, Kerr S, Crawford M, Elliott D. Memories of intensive care and experiences of survivors of a critical illness: an interview study. Intensive Crit Care Nurs. 2004;20:257–263
  2. Bergbom I, Haljamäe H. Assessment of patients’ experience of discomforts during respirator therapy. Crit Care Med. 1989;17:1068–1072
  3. Briscoe WP, Woodgate RL. Sustaining self: The lived experience of transition to long-term ventilation. Qual Health Res. 2010;20:57–67
  4. Carroll SM. Silent, slow lifeworld: the communication experience of nonvocal ventilated patients. Qual Health Res. 2007;17:1165–1177
  5. Davies D. Reflection on practice: an intubated patient suffering panic attacks. Nurs Crit Care. 2007;4:198–201
  6. De Jonghe B, Cook C, Appere-DeVecchi C, Guyatt G, Meade M, Oulin H. Using and understanding sedation scoring systems: a systematic review. Intensive Care Med. 2000;26:275–285
  7. Devlin J, Boleski G, Mlynarek M, Nerenz D, Peterson E, Jankowski M, et al. Motor Activity Assessment Scale: a valid and reliable sedation scale for use with mechanically ventilated patients in an adult surgical intensive care unit. Crit Care Med. 1999;27:1271–1275
  8. Dreyer A, Nortvedt P. Sedation of ventilated patients in intensive care units: relatives’ experiences. J Adv Nurs. 2007;61:549–556
  9. Engström Å, Söderberg S. Receiving power through confirmation: the meaning of close relatives for people who have been critical ill. J Adv Nurs. 2007;59:569–576
  10. Foster A. More than nothing: the lived experience of tracheostomy while acutely ill. Intensive Crit Care Nurs. 2010;26:33–43
  11. Fridh I, Forsberg A, Bergbom I. Close relatives’ experiences of caring and of the physical environment when a loved one dies in an ICU. Intensive Crit Care Nurs. 2009;25:111–119
  12. Gallant MH, Beaulieu MC, Carnevale FA. Partnership: an analysis of the concept within the nurse–client relationship. J Adv Nurs. 2002;40:149–157
  13. Granberg A, Bergbom I, Lundberg D. Patientś experience of being critically ill or severe injured and cared for in intensive care unit in relation to the ICU syndrome. Part I. Intensive Crit Care Nurs. 1998;14:294–307
  14. Granja C, Lopes A, Moreira S, Dias C, Costa-Pereira A, Carneiro A. Patients‘recollections of experiences in the intensive care unit may affect their quality of life. Crit Care. 2005;9:96–109
  15. Johnson P. Reclaiming the everyday world: how long-term ventilated patients in critical care seek to gain aspects of power and control over their environment. Intensive Crit Care Nurs. 2004;20:190–199
  16. Karlsson V, Forsberg A. Health is yearning—experiences of being conscious during ventilator treatment in a critical care unit. Intensive Crit Care Nurs. 2008;24:41–50
  17. Karlsson V, Forsberg A, Bergbom I. Relatives’ experiences of visiting a conscious, mechanically ventilated patient—a hermeneutic study. Intensive Crit Care Nurs. 2010;26:91–100
  18. Karlsson V, Lindahl B, Bergbom I. Patients’ statements and experiences concerning receiving mechanical ventilation: a prospective video-recorded study. Nurs Inq. 2011;
  19. Lincoln YS, Guba EG. Naturalistic inquiry. Newbury Park (CA): Sage Publications Inc.; 1985;
  20. Lindseth A, Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci. 2004;18:145–153
  21. Löf L, Berggren L, Ahlström G. Severely ill patients recall of factual events and unreal experiences of hospital admission and ICU stay-3 and 12 months after discharge. Intensive Crit Care Nurs. 2006;22:154–166
  22. Magnus VS, Turkington L. Communication interpretation in ICU—patient and staff experiences and perception. Intensive Crit Care Nurs. 2006;22:167–180
  23. McKinley S, Nagy S, Stein-Pairbury J, Bramwell M, Hudson J. Vulnerability and security in seriously ill patients in intensive care. Intensive Crit Care Nurs. 2002;18:27–36
  24. Meijers K, Gustafsson B. Patient's self-determination in intensive care – from an action – and confirmation theoretical perspective. The intensive care nurse view. Intensive Crit Care Nurs. 2008;24:222–232
  25. Patak L, Gawlinski A, Fung I, Doering L, Berg J. Patients’ reports of health care practitioner interventions that are related to communication during mechanical ventilation. Heart Lung. 2004;5:308–320
  26. Ricoeur P. Interpretation theory: discourse and the surplus of meaning. Forth Worth: Texas Christian University Press; 1976;
  27. Ricoeur P. Oneself as another. Chicago and London: The University of Chicago Press; 1992;
  28. Ringdal M, Plos K, Lundberg D, Johansson L, Bergbom I. Outcome after injury: memories, health-related quality of life, anxiety, and symptoms of depression after intensive care. J. Trauma. 2009;66:1226–1233
  29. Rotondi AJ, Chelluri L, Sirio C, Mendelssohn A, Schulz R, Belle S, et al. Patient‘s recollections of stressful experiences while receiving prolonged mechanical ventilation in an intensive care unit. Crit Care Med. 2002;4:746–752
  30. Samuelsson K. Sedation during mechanical ventilation in intensive care. Sedation practices and patients’ memories, stressful experiences and psychological distress. Doctoral Dissertation. Lund University, Sweden, Faculty of Medicine, Lund; 2006.
  31. Samuelsson K, Lundberg D, Fridlund B. Memory in relation to depth of sedation in adult mechanical ventilated intensive care patients. Intensive Care Med. 2006;32:660–667
  32. Samuelsson K, Lundberg D, Fridlund B. Stressful experiences in relation to depth of sedation in mechanically ventilated patients. Nurs Crit Care. 2007;12:93–104
  33. Stein-Parbury J, McKinley S. Patients’ experiences of being in an intensive care unit: a select literature review. Am J Crit Care. 2002;9:20–27
  34. Strøm T, Martinussen T, Toft P. A protocol of no sedation for critically ill patients receiving mechanical ventilation: a randomized trial. Lancet. 2010;375:475–480
  35. Wang K, Zhang B, Li C, Wang C. Qualitative analysis of patients’ intensive care experience during mechanical ventilation. J Clin Nurs. 2009;18:183–190
  36. Whittemore R, Chase SK, Mandle CL. Validity in qualitative research. Qual Health Res. 2001;11(4):522–537
  37. World Medical Association. 2008. The Declaration of Helsinki. Ethical principles for Medical Research involving Human Subjects. Accessed from <http://www.wma.net/e/policy/b3.htm>

PII: S0964-3397(11)00119-4

doi:10.1016/j.iccn.2011.11.002

Intensive and Critical Care Nursing
Volume 28, Issue 1 , Pages 6-15, February 2012

Article Tools