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Intensive and Critical Care Nursing (2015) xxx, xxx—xxx
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/iccn
ORIGINAL ARTICLE
Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study Ellen Klavestad Moen a,∗, Dagfinn Nåden b a
Østfold Hospital Trust, Research and Innovation, Box 16, N-1603 Fredrikstad, Norway Department of Nursing, Faculty of Health, Oslo and Akershus University College of Applied Sciences, Box 4, St. Olavs Plass, 0130 Oslo, Norway
b
Accepted 13 March 2015
KEYWORDS Dignity; Critical care nursing; Intensive care patient; Patient experiences
∗
Summary Aim: The aim of the study was to acquire knowledge of what contributes to maintaining and promoting the dignity of intensive care patients. Method: The study takes a phenomenological approach, and the method of data collection is qualitative research interviews. The participants consist of seven former intensive care patients. The analysis was carried out by means of Giorgi’s phenomenological analysis strategy. Findings: Being seen and heard and having one’s wishes and needs attended to are parts of dignified care. Personal and individual nursing was essential, as well as the extra involvement beyond what was expected. Being helpless and having to be cared for was unpleasant and degrading. The experience of being unable to speak could cause demeaning situations. Being met with respect was the essence of having one’s dignity maintained and promoted. The sense of being treated as an object was the essence of experiences that inhibited dignity. Conclusion: The findings indicate that the intensive care patients’ experience of having their dignity maintained in an intensive care unit is good, despite a high-tech, busy environment. There is also potential for improvement in several areas. Awareness, moral integrity and demeanour are central to dignified patient care from the perspective of intensive care patients. © 2015 Elsevier Ltd. All rights reserved.
Corresponding author. Tel.: +47 90794145. E-mail addresses: [email protected] (E.K. Moen), dagfi[email protected] (D. Nåden).
http://dx.doi.org/10.1016/j.iccn.2015.03.003 0964-3397/© 2015 Elsevier Ltd. All rights reserved.
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
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Implications for clinical practice • Encountering the intensive care patients with respect is essential to preserve the intensive care patients’ dignity. • Awareness, moral integrity and demeanour by the intensive care nurse are central to dignified intensive patient care. • In a high technology environment it is crucial to be aware of the balance between care and technological operational tasks.
Introduction Intensive care patients are in a context where they may be comatose and on mechanical ventilation. They receive medical treatment and care in an advanced, technological and busy environment. With such complex treatment there is a risk that the medical treatment and technological equipment take too much of the nurses’ attention, at the expense of the patients’ psychosocial needs. Attention to the dignity of patients may be under pressure, which may give them a feeling of dehumanisation (Calne, 1994). Intensive care patients may lose control over their situation because of the injury, illness and treatment, be prone to reduced autonomy and integrity and be excluded from communication (Stubberud, 2010, 2013). Intensive care patients now tend to be kept awake during mechanical ventilator treatment (Karlsson, 2012), which may increase their possibility of subsequent recollection of the intensive care treatment. Patients’ experiences of dignified care must therefore be considered vital in research and development of knowledge about nursing in an intensive care unit.
Background Dignity is a fundamental value in nursing; maintenance of patients’ dignity is an ethical responsibility for caregivers. The concept has many dimensions and encompasses behaviour, manner and even status. The word dignity is derived from the latin dignitas, meaning worthy. Dignity and worthiness are thus related, but not identical concepts (Edlund et al., 2013; Eriksson, 1996, 2006). Man’s dignity is both absolute and relative. Absolute dignity is given to man from creation and is infinite and impossible to renounce. Absolute dignity is reflected as traces in the relative dignity in an inner ethical and an external aesthetic dignity. The inner dimension consists of internalised ethical attitudes giving each person an awareness of dignity in oneself and others. The external aesthetic dignity reflects dignity in action and is created in relations with others. This relative dignity can be broken down and erased, but it can also be reinstated and recreated (Edlund, 2002; Edlund et al., 2013; Eriksson, 1996, 2006). The following literature review shows that research focusing on the dignity of intensive care patients is sparse. However, several studies discuss the experience of former intensive care patients, where the issue of dignity is touched on and feelings of dehumanisation are uncovered. Essential elements of former intensive care patients’ experience, according to Gjengedal (1994) were a loss of voice, the importance of personal relations, anxiety and insecurity, disorientation to time and a changed sense of their body. According to Russell (1999) the most important
change was the close monitoring by means of medical technical equipment while nursing staff gave patients a sense of safety. Good communication between patients and nurses was perceived as therapeutic and reassuring, while a lack of communication was a burden. From different perspectives similar findings have been reported by Almerud et al. (2007), Fredriksen and Ringsberg (2006), Hofhuis et al. (2008), Karlsson and Forsberg (2008), McKinley et al. (2002), Schou and Egerod (2008). Vulnerability and unpleasant experiences increased if the staff were not forthcoming. Wang et al. (2008) concluded that an intensive care unit should be a place where patients are treated as individuals, not just a place for survival. The patients in Samuelson’s (2011) study had both unpleasant and pleasant recollections of their stays in the intensive care unit, including care involving staff with unsatisfactory behaviour and attitudes. Lack of respect and attention and indifferent care were reported. The same study also described cases of exceptional behaviour and attitudes among staff, emphasising their sympathetic personality, attitude and conduct. Being awake during ventilator treatment involves being painfully aware that one is dependent on others, being voiceless and helpless. It is possible for patients to endure the situation if they have nurses who assist them, are attentive to their expressions, remain alert to their needs and do not leave them (Karlsson, 2012). The literature review shows that research focusing on the dignity of intensive care patients is scant. Although there are several studies where former intensive care patients tell about their experiences of being cared for in intensive care units, and where dignity experiences are mentioned in the results, few studies have been carried out where the main focus is on patients’ experiences of preserving their dignity. We identified a need for a study such as the present one to be carried out.
Aim The aim of the study was to acquire knowledge of what contributes to maintaining and promoting the dignity of intensive care patients. This gave rise to the following overarching research question: what are the experiences of former intensive care patients of having their dignity upheld during their stay in the intensive care unit?
Method The study takes a phenomenological approach (Giorgi, 1985). Phenomenology is concerned with understanding social phenomena from the person’s own perspective and descriptions of the world as it appears to them, from the
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
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Intensive care patients’ perceptions of how their dignity is maintained understanding that the real reality is what people perceive (Kvale and Brinkmann, 2009). The design is phenomenological and exploratory due to the lack of previous studies on the topic (Brink and Wood, 1998; Giorgi, 1985). Individual research interviews were conducted.
Setting and participants The study was carried out at an average-size intensive care unit in Norway accommodating eight patients. The unit treats an average of 550 patients a year. The inclusion criteria were that patients must be at least 18 years old, they must have stayed in the intensive care unit for at least five days over the past year, they must be competent to consent, proficient in Norwegian, oriented to time and place and willing to participate. The interviews were carried out on the same day as the former intensive care patients came for a follow-up consultation. Ten persons were asked, three did not wish to participate. The participants thus consisted of seven former intensive care patients, four men and three women. The number of days in the unit and on the mechanical ventilator varied. There was also great variation as to how much the participants remembered about their stay.
Data collection The interviews took place between 5 and 12 months after the patient had been discharged from the intensive care unit, and were conducted in the same room where the follow-up consultation had taken place. The interviews lasted between 20 and 60 minutes. A thematic conversation guide designed for the current study was used. Open questions were asked, with the possibility of follow-up questions to enable informants to recount their experiences as freely and openly as possible. The interviews focused on the following themes: experiences related to autonomy, integrity and communication, considerations of the phenomenon of dignity and also experiences related to dignity being inhibited or promoted. A tape-recorder was used during the interviews. The recordings of the interviews were later transcribed by the first author. The written text became the material for the subsequent text analysis.
Table 1
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Analysis The analysis of the transcribed interviews was conducted according to Giorgi’s phenomenological analysis strategy (1985). This analysis consists of four steps: developing a sense of the whole, identifying meaning units, abstracting the content of individual meaning units and finally synthesising the significance of the meaning units. In the first step of the analysis, the whole interview was read several times to give the researcher an overview of and familiarity with its content. In the next step the interview was re-read to identify meaning units from the perspective of caring science (Eriksson, 1996, 2006) and with a focus on the issue under study. The text was divided into smaller units and reduced somewhat. Changes in the text were detected, to form a basis for meaning units. The identification of meaning units was spontaneous, without much reflection on the meaning of each unit. In the third step the meaning units were transformed into a reduced text. The transformation was achieved by a process of reflection and use of the ‘‘free imaginative variation method’’ (Giorgi, 1985): ‘‘The intent of the method is to arrive at the general category by going through the concrete expressions and not by abstraction or formalization, which are selective according to the criteria accepted’’ (Giorgi, 1985, p. 17). In the fourth step, a specific description of the phenomenon was formulated, based on the transformed meaning units expressed by each informant. Essential topics were identified, to form the fundamental pattern of the essence of all the interviews. Further, a general description of the phenomenon was formulated based on the pattern and the synthesis of the statements of all the informants, which in turn formed superordinate themes and results (Table 1). The analysis required a constant to-ing and fro-ing in the material by the researcher. Views from all the informants described and substantiated the themes arrived at. According to Källerwald (2007) an open attitude to the phenomenon under study is central to phenomenological research. The greatest threat to the openness is pre-conception and a rash and unconsidered understanding by the researcher. During the analysis the researchers strove to be conscious of their pre-understanding and to bracket and bridle it, so that nuances, variation and new insight into the phenomenon of dignity could be foregrounded. The researchers discussed the themes until consensus was obtained.
From meaning unit to theme.
A. Meaning unit
B. Reduced text
C. Specific/general description
D. Theme
Not used to receiving care from others
The informant says that it was strange to be looked after by others. He felt it was strange at first to have his body washed by others, but thought this was how it must be, and accepted it
The informant thought it was strange to have his body washed by others. He had no possibility of doing it himself, so he had to accept the situation. He got used to it after a while, and said it was OK
Letting the carers take over
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Ethical considerations The study was approved by Regional Ethical Committee (REK), and permission to carry out the study was obtained from the head of research at the hospital in question. The former intensive care patients who participated in the study were informed in writing about the purpose of the study as well as potential advantages and drawbacks of participating. Anonymity and confidentiality were assured. Information was distributed with a consent form that had to be signed by each participant. The participants were told that they could withdraw from the study at any point.
Findings The essence includes five themes concerning dignity for the intensive care patient: (1) being heard and seen, (2) letting the carers take over, (3) frustration about inability to speak, (4) being respected, and (5) feeling violated.
Being heard and seen The participants felt that their wishes and needs were largely attended to. Requirements concerning care and personal hygiene were most often met. When nursing staff spent some time surveying the patients’ wishes and needs, patients had a good experience. They felt that their individual needs were taken care of and that their views on the care were heard. ‘‘It was good to be in intensive care. Whenever I had a question, I was heard immediately’’ (Participant 3). The participants recounted experiences in which the nurses understood their needs without them having to ask, and such experiences were positive. Examples were nurses washing the patients’ hair, giving extra care, or lotioning their hands and feet. Such things made the patients feel better, more well-tended and well taken care of. The participants also felt that the nurses were present and available all the time. ‘‘The nurses in the intensive care practically never left my bedside. I see them as angels’’ (P.1). The nurses had realised the challenges of seeing the intensive care patients as individual people. Several patients had felt unable to communicate, and since they could not speak, they thought it must be difficult for the nurses to understand who they were as persons. Despite this challenge, they felt that the nursing staff had seen them and became acquainted with them. ‘‘I was treated properly, of course, there was never a problem about that. In the intensive care unit I was seen as a person, but not in the general ward’’ (P.3). The participants had experiences in the intensive care unit that corresponded to their expectations, but also felt that some of the nurses had given more care and support than expected. Some informants referred to this as ‘‘a little extra’’, which increased the sense of receiving good and dignified care.
‘‘I reacted very positively when one of these nurses said that we’re going to wash your hair. . . She just saw and understood. . . I liked her very much after that. . . Maybe she had been in the same situation herself, I don’t know. Because that’s perhaps what makes you think about it, if you’ve been a patient . . . or next of kin. You know, you sense that they do a little extra for the patients’’ (P.4). Some factors of the situation led to wishes and needs not always being met. One of these was that the patients could not communicate verbally, which made it difficult to express their wishes and needs, such as wanting care. Another factor related to resources in the ward. Some of the informants sometimes wished to get out of the bed and into a chair, but could not always do this when they wanted because there were not enough nurses to help them move. Participants described negative experiences where they felt forced to participate in activities against their will. These were particularly activities related to exercise and mobilisation where patients were forced to exercise even if they felt too weak. However, they understood with hindsight that the exercising was for their own good, and that the nurses had put pressure on them to make them better. ‘‘You felt a bit patronised when they just took off the ventilator and put on the speaking valve. I felt like I’d been out running and was completely exhausted. You don’t want to start over again then. But you were forced to go on, and when you’d finished, you were even more exhausted, and fell asleep just like that’’ (P.3). Situations where the patients were not heard were described as bad and difficult. The bad experiences faded with hindsight and the realisation that the nurses’ intention was that the patients should recover. ‘‘I felt a little bit patronised sometimes, but I think that was for my own good’’ (P.6).
Letting the carers take over The participants said they felt so ill and helpless that they were forced to leave all or most of their care to the nurses. Most of the informants said they were unused to receiving care from others. Their intimate space was violated, and they described this as unpleasant, embarrassing, horrible and humiliating. Some informants also felt sorry for the nurses who had to look after them. ‘‘It was really unpleasant to receive care at first. Anyone would react to that, because it’s not normal. But then you understand that it’s necessary, you can’t do it yourself. And then somebody else has got to do it. In the end you appreciate it a lot’’ (P.5). The participants said they had developed strategies for getting used to receiving care from others. Some stared at the ceiling and tried to think of something else, and some felt it was of great help if the nurses as well as the patients themselves could make use of humour about the caring situation. When the nurses gave care in a respectful manner, it was easier to receive it. Several participants thought it was important that the nurses approached them judiciously, not doing things without asking first. It was also important that
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Intensive care patients’ perceptions of how their dignity is maintained the nurses gave the care as a matter of course, not showing any signs of disgust, particularly when the patient needed intimate washing. The fact that nurses did not show any negative signals during caregiving, helped the participants perceive the situation as less stressful. ‘‘The nurses, quite incredible. Looking after you and caring for you and. . . When the digestion started working, it was just pouring out. And I thought that was terrible, because they had to get both me and the bed changed all the time. But they did not seem bothered at all. They just said, ‘‘Fantastic, that means that your bowels have started working’’ (P.1). Being protected was also vital for the patients to feel that care was less uncomfortable. Some participants said that they were always covered during the nursing care, and felt that their personal sphere was being respected. One participant, however, said he had felt like he was on show during the care-giving, and that this was humiliating because other people were entering his room where he lay, also under the care. Another participant described strong, negative experiences related to the medical rounds. He recollected that the doctors came into the shared room, over to his bed, removed the duvet, took a look at his sick, naked body and left. He felt objectified and humiliated, and thought these doctors had no idea about dignity. ‘‘The doctors do not think about the patients’ dignity. Because there I was, with no clothes or trousers and the doctors just came in and threw off the duvet to take a look. They did not think of pulling the curtain. I felt like dirt. It’s stuck in my mind. It was humiliating to lie there on show for anyone to see. There was a great difference between the doctors and the nurses, because the nurses pulled the curtains every time’’ (P.1).
Frustration about inability to speak
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‘‘What I thought was worst was that I couldn’t talk when I had that plug in my throat, when I hadn’t got the speaking valve yet. I thought that was horrible. For instance, my legs hurt a lot, and especially when they were going to turn me around, some of them were quite heavy-handed. And it was painful. So getting that message through was difficult, I thought’’ (P.4). Most of them had developed a technique for communicating, some using a letter board and others blinking or issuing simple sounds. This was time-consuming, and there was a great risk of miscommunication between patients and nurses. ‘‘When I got the speaking valve, I felt that I could talk properly and that I was myself again. I wanted to have the speaking valve practically all the time. Then I felt I got my way, or at least they understood what I was saying’’ (P.7). Getting their voice back gave them a feeling of being a more complete person, more free and autonomous.
Being respected For intensive care patients to be shown respect by the staff turned out to be an essential feature of the patients’ descriptions of dignity. Being respected as a patient had several facets. The importance of meeting the patient’s individual needs was emphasised, and it was essential that the nursing staff asked the patients and their families what were their individual wishes and needs. Spending time on this was perceived as very important. Addressing the intensive care patients with simple yes-no questions could make it easier for them to respond when they were connected to the ventilator. ‘‘What can promote dignity is that the staff think about your well-being all the time, and that they ask you about your needs at every turn. That you don’t lie there feeling like a pain’’ (P.1).
Not being able to communicate as usual was perceived as unpleasant and problematic. The participants expressed that it had been difficult to communicate when they had a tube in their mouth or had a tracheostomy and were connected to a ventilator. The staff had made an effort to understand what the patients were trying to express, but often the message that the patients were trying to communicate was not understood.
Nurses who were genuinely concerned with the patients and the treatment of them promoted dignity. The patients then felt valued and respected. Some participants were concerned that the patient should have a feeling of well-being, because the feeling of well-being was associated with dignified patient care. Another way of showing consideration for the patients and make them participate was to give information about what was going to happen in the next hour or day.
‘‘I was frustrated and annoyed because I couldn’t talk. I wished there was a machine that could read my mind’’ (P.5).
‘‘You feel more dignity if they give you information continuously, and maybe repeat it too. Because it’s important that you’re part of the team. That you’re not just an interesting case lying there’’ (P.4).
Inability to communicate their need for necessary care was perceived by the participants as one of the most frustrating issues. Several described feelings such as helplessness, but also anger and irritation. Several participants felt frustration at being unable to inform staff about their pain and how to deal with it. Their bodies often hurt, and turning in bed was therefore a problem. The patients could not tell the nurses where to touch or not to touch them to lessen their pain while turning them in bed.
Good dialogue between the staff and the patients was highlighted as part of dignified care. Some of the participants greatly appreciated the use of humour. This could make difficult situations easier to deal with and contribute to a confidence that the staff strove to improve the situation for the patient. The staff should also be supportive and encouraging for the intensive care patients, since the patients were in a very
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vulnerable situation, and could have low self-esteem in their current state. ‘‘It promotes dignity. . . to be praised for what little you can do. Even if it’s not much, it can help your confidence. Because my confidence wasn’t sky-high, to put it like that. . . I felt small and helpless, I really did’’ (P.5).
Feeling violated Patients could feel violated if they were not heard and seen by the nursing staff. The informants thought there was a great risk of this when they were unable to speak. ‘‘It’s easy to feel patronised when you can’t talk’’ (P.2). To have decisions taken for you was an experience that did not promote dignity. Patients felt violated if the staff patronised them with regard to their individual wishes and needs. This could contribute to the patient feeling that he was seen as an object rather than the person he was. Being exposed during care and examinations was objectifying and was perceived as an act of violation. ‘‘I remember that these open curtains felt humiliating. There was a man just across from me and he could see every day how I was exposed’’ (P.1). Condescending attitudes from the staff were also perceived as undignified treatment. This was connected to disempowerment. A lack of involvement from the staff was also mentioned as a factor demoting dignity. Participants said that being a helpless patient in intensive care was humiliating in itself. Being dependent, being nursed, fed and cared for by others was demeaning. ‘‘Experiences that demote dignity are that you are nursed, fed and given medication. It’s a clear sign that you can’t take care of yourself. It doesn’t boost confidence’’ (P.5). The feeling of not being self-sufficient, and being totally dependent on help was difficult and overwhelming. It felt demeaning, but they had no other choice than living with it. Informants said that it was difficult and frustrating to be weak and helpless and unable to help yourself when you were usually self-sufficient. This lowered self-esteem and the feeling of vulnerability was massive. In this connection one participant said: ‘‘I felt trapped in a sad way’’ (P.5).
Discussion Being heard and seen by the nursing staff as patients in intensive care provided good experiences of wellbeing for the participants. If nurses responded when patients expressed a need and acted on it patients felt well taken care of. This is a finding of other studies too (Almerud et al., 2007; Karlsson, 2012). Almerud et al. (2007) described intensive care patients feeling like objects and invisible as human beings and Karlsson (2012) described how ventilator patients who were awake struggled to be independent and authoritative, and who thought it positive if they had a sense of community with the nurses. This gave a sense of security,
and the patient felt like an important person with an identity. Being heard and seen are associated with confirmation and invitation. Being seen as a patient confirms the patient’s value as a human being (Nåden and Eriksson, 2004). When patients are invited into a community they feel welcome into the relation. In this study, some nurses were described as doing a little extra. By this, the informants meant that these nurses were genuinely interested in their patients and they were involved in the treatment of them. Doing the little extra for patients entails a power to embrace the patients’ dignity because they feel that they are given compassionate care and feel valued (Arman and Rehnsfeldt, 2007). The ability to see a suffering person who needs to be met with warmth and compassion and thereby helping relieve the suffering contributes to maintaining the patients’ relative and absolute dignity (Edlund, 2002; Edlund et al., 2013). The experience of letting the carers take over was overwhelming to several informants. At the same time they accepted the situation and expressed a willingness to receive help. Such experiences are also described in other studies. The sense of being dependent on others was described as stressful, burdensome and existential (Fredriksen and Ringsberg, 2006; Gjengedal, 1994; Hofhuis et al., 2008; Holland et al., 1997; Karlsson, 2012; Karlsson and Forsberg, 2008; McKinley et al., 2002; Samuelson, 2011; Wang et al., 2008). For an intensive care patient who is dependent on others the feeling of dependence and helplessness will be influenced by the patient-nurse relation. From different perspectives the significance of this relation is highlighted by for example Fredriksen and Ringsberg (2006), Hofhuis et al. (2008), Holland et al. (1997), Stein-Parbury and McKinley (2000). The relation requires consideration and moral awareness on the part of the nurse. Receiving care from others was an unpleasant experience for all the participants. They considered it humiliating to lose their personal sphere. Russell (1999) reports similar findings. The loss of privacy was described as a disturbing experience. Lawler (1996) maintains that it is fundamental to help patients overcome their embarrassment about bodily care during illness when the situation demands it. A lack of acknowledgement that the patient may feel ill at ease can reduce the patient to an object. Being undressed and having their bodies exposed was an experience that was described as humiliating in the present study. According to Edlund et al.’s (2013) model of dignity, the informants’ relative dignity was torn down when the patients were being exposed. Attempts were made to restore their dignity when the nurses became aware of the situation and tried to prevent the exposure of the patient’s body. Intensive care patients feeling uncovered and exposed were also described in an observational study by Turnock and Kelleher (2001), who found that the private parts of intensive care patients were exposed in over 40% of the cases. Being unable to speak created unpleasant and taxing experiences, which has also been found in other studies (Gjengedal, 1994; Karlsson, 2012; Rotondi et al., 2002; Schou and Egerod, 2008; Stein-Parbury and McKinley, 2000) where former intensive care patients describe this as
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Intensive care patients’ perceptions of how their dignity is maintained stressful, inhibiting, painful and difficult. Inability to communicate their needs could cause negative situations for the participants, such as staying unattended to. Inadequate communication could lead to care-related suffering because of insufficient care, which is a violation of a person’s relative dignity, the inner as well as the external dimension (Edlund, 2002; Edlund et al., 2013; Eriksson, 2006). When patients are unable to speak normally, it is essential for nurses to make an effort to understand the patients and spend time finding alternative forms of communication. Previous studies show that successful communication between the intensive care patient and the nurse is vital to good patient treatment in intensive care (Karlsson, 2012; Russell, 1999; Schou and Egerod, 2008). When patients in the present study regained their voice, they felt more whole as persons, and they could take part in decision-making regarding their treatment and care. This was also found by Karlsson (2012). Being respected was the essence of dignity for the participants. Nelson et al. (2010) found that high-quality care in a palliative intensive care unit consisted, among other things, of consideration for the patient’s dignity. This included an aspect of respect and personal care, according to patients as well as their families. Nåden and Sæteren (2006) hold that confirmation is an essential part of nursing care, and that it facilitates personal growth and participation for the patients, thus contributing to the maintenance of their dignity. Providing sufficient information was another element in showing respect for the patient. This gave the patient the possibility of taking part in his treatment. The value of giving patients information has been described in earlier studies (Holland et al., 1997; Hupcey, 2000; McKinley et al., 2002; Wang et al., 2008). A good dialogue and good relations promoted dignity in the intensive care patient. Support and encouragement were perceived as good for confidence, as is also emphasised by Schou and Egerod (2008). A lack of stimuli and expectations maintain the patients’ sense of worthlessness (Karlsson and Forsberg, 2008). Seeing the patient, encouraging and supporting him can contribute to enhancing the patient’s self-worth. It was important for the participants that nurses had appropriate moral/ethical attitudes and were conscious of them. They claimed that nurses must look upon patients as complete individuals and not just as a diagnosis. An awareness of one’s moral integrity as a nurse must be central in patient treatment in intensive care. Abilities such as awareness, consciousness, personal responsibility, involvement, brotherhood and active defence of dignity are necessary requirements for nurses to counteract the risk of dehumanisation and demeaning care in an intensive care unit, according to Söderberg et al. (1997). Examples of demeaning actions that did not promote dignity were not being seen and heard, having one’s decision taken for one, and being patronised. Being treated like an object and not as a real person was also a demeaning experience. Previous research describe similar perceptions (Almerud et al., 2007; Karlsson and Forsberg, 2008; McKinley et al., 2002; Russell, 1999; Wang et al., 2008). A patient who is not confirmed and who is being patronised is exposed to care-related suffering, which violates the patient’s relative dignity. Nurses who either see or
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inadvertently participate in care and treatment, in which the patient is violated, also violate their own dignity (Eriksson, 2006; Nåden and Eriksson, 2004). Nurses can feel that their own values are being violated, and that the responsibility for the patient is diminished. A state of helplessness is described by the participants as a demeaning experience in itself. It created a sense of vulnerability, low self-esteem and of being trapped. Similar findings have been reported in studies by Hupcey (2000), Rotondi et al. (2002), Schou and Egerod (2008) and Wang et al. (2008). Independence and the ability to manage on one’s own can be important to dignity. When people fall ill, their bodies break down and they have to accept help, they may be left with a sense of degrading and shame, and an image of themselves as less valuable than before. The relative dignity is perceived as being violated. To reinstate a dignity that has been violated, one must accept the offer of help. One must be reconciled with a new situation and allow oneself to be dependent on others. A new form of dignity must be allowed to develop (Edlund, 2002; Edlund et al., 2013). Nurses surrounding the patient must facilitate this through respectful and accommodating care. To our knowledge, no previous studies have probed into former intensive care patients’ experiences regarding the maintenance of their dignity during their stay in an intensive care unit. The findings regarding factors promoting and demoting dignity, as well as what is the essence of dignified treatment in an intensive care unit, are considered new, and not accounted for by previous research.
Limitations of the study The participants are a relatively small group representing differences in gender and age, diagnosis and medical treatment, number of days on the ventilator, and different lengths of stay. What they have in common is that they have been ventilator patients in a high-tech intensive care unit. The different life experiences of the group may have influenced the findings, while also providing breadth to the material. The participants varied as to how much they remembered from their stay, but most remembered large parts of it. Their descriptions of their stay is thus from the times they can recollect. The medical state of the patient may also have influenced their input. The fact that the interviews were conducted some time after their discharge from intensive care may also have influenced the views they presented. To some extent their recollections may have changed character during this period. Experiences may have been reinforced, but also faded. There is also a risk that the researcher’s preunderstanding can affect the results (Källerwald, 2007). In this study the researchers made an effort to be aware of and bracket the pre-understanding, so that nuances, variation and new knowledge about the phenomenon dignity could emerge. Member checking was not performed formally after the data had been fully analysed, which might be viewed as a limitation. Member checking was, however, carried out during the interviews through deliberate probing to ensure that interviewer had understood the participants’ meanings (Polit and Beck, 2008).
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Conclusion The findings of this study show that experiences of being heard and seen and having one’s wishes and needs attended to were important elements in dignified treatment. That the nursing was personal and individual reinforced the patients’ sense of having his dignity preserved. Some nurses do the little extra, which meant that nurses were involved and genuinely concerned with patients beyond their expectations. This enhanced the patients’ sense of dignity. Being ill and helpless and receiving care from others was unpleasant and demeaning experiences. They threatened dignity, but the situation was acceptable and bearable if the relation between the patient and the nurse was marked by respect and openness. The inability to speak when connected to a mechanical ventilator was perceived by patients as difficult, and could cause degrading situations. The patients perceived it as a relief when they could speak again. Being respected was the essence of having one’s dignity maintained and promoted. An element of this was to be seen as a person, not as a case. The sense of violation was the essence of actions that demoted dignity. This included experiences of being treated like an object, and being patronised with regard to wishes and needs. Helplessness was perceived as degrading in itself.
Acknowledgements The authors are grateful to the former intensive care patients who participated in the study and shared their recollections and experiences from the intensive care unit. We are also grateful to Hilde Hasselgård, Dr. Art, University of Oslo, for her expert help in translation. Funding: The authors have no sources of funding to declare. Conflict of interests: The authors have no conflict of interest to declare.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at http://dx.doi.org/10.1016/ j.iccn.2015.03.003.
References Almerud S, Alapack RJ, Fridlund B, Ekebergh M. Of vigilance and invisibility-being a patient in technologically intense environments. Nurs Crit Care 2007;12(3):151—8. Arman M, Rehnsfeldt A. The little extra that alleviates suffering. Nurs Ethics 2007;14(3):372—86. Brink PJ, Wood MJ. Advanced design in nursing research. 2nd ed. Thousand Oaks: SAGE Publications Inc.; 1998. Calne S. Dehumanisation in intensive care. Nurs Times 1994;90(17):31—3. Edlund M. Människans värdighet: ett grundbegrepp inom vårdvetenskapen (Human dignity - a basic caring science concept) [Ph.D. thesis]. Åbo: Åbo Akademis Forlag-Åbo Akademi University Press; 2002. Edlund M, Lindwall L, von Post I, Lindström UÅ. Concept determination of human dignity. Nurs Ethics 2013;20(8):851—60.
Eriksson K. Om människans värdighet. In: Bjerkreim T, Mathisen J, Nord R, editors. Visjon, viten og virke [Vision, know-how and profession]. Oslo: Universitetsforlaget; 1996. p. 79—86. Eriksson K. The suffering human being. Chicago: Nordic Studies Press; 2006. Fredriksen ST, Ringsberg KC. Living the situation stress-experiences among intensive care patients. Intensive Crit Care Nurs 2006;23:124—31. Giorgi A. Phenomenology and psychological research. Pennsylvania: Duquesne University Press; 1985. Gjengedal E. [Dissertation] Understanding a world of critical illness. A phenomenological study of the experiences of respirator patients and their caregivers [Dissertation]. University of Bergen; 1994. Hofhuis JGM, Spronk PE, van Stel HF, Schrijvers AJP, Rommes JH, Bakker J. Experiences and critically ill patients in the ICU. Intensive Crit Care Nurs 2008;24:300—13. Holland C, Cason CL, Prater LR. Patients’ recollections of critical care. Dimens Crit Care Nurs 1997;16(3):132—41. Hupcey JE. Feeling safe: the psychosocial needs of ICU patients. J Nurs Scholarsh 2000;32(4):361—7. Karlsson V. [Ph.D. thesis] Att vårdas vaken på respirator — patienters och närståendes upplevelser från en intensivvårdavdelning [Being conscious during mechanical ventilator treatment — patients’ and relatives’ experiences in intensive care units] [Ph.D. thesis]. Gothenburg University; 2012. 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. Kvale S, Brinkmann S. Det kvalitative forskningsintervju [The qualitative research interview]. 2nd ed. Oslo: Gyldendal Norsk Forlag AS; 2009. Källerwald S. I skuggan av en hotad existens-om den onödiga striden mellan biologi och existens i vården av patienter med malignt lymfom [On the unnecessary battle between biology and existence in the care og malignant lymhoma patients] [Ph.D. thesis]. Växjö University; 2007. Lawler J. [Smith A-M, Trans] Bak skjermbrettene. Sykepleie, somologi og kroppspleie [Behind the screens. Nursing, somology and the problem of the body] [Smith A-M, Trans]. Oslo: Ad Notam Gyldendal AS; 1996 [original work published 1991]. McKinley S, Nagy S, Stein-Parbury J, Bramwell M, Hudson J. Vulnerability and security in seriously ill patients in intensive care. Intensive Crit Care Nurs 2002;18:27—36. Nelson JE, Puntillo KA, Pronovost PJ, Walker AS, McAdam JL, Ilaoa D, Penrod J. In their own words: patients’ and families define high-quality palliative care in the intensive care unit. Crit Care Med 2010;38(3):808—18. Nåden D, Eriksson K. Understanding the importance of values and moral attitudes in nursing care in preserving human dignity. Nurs Sci Q 2004;17(1):86—91. Nåden D, Sæteren B. Cancer patients’ perception of being or not being confirmed. Nurs Ethics 2006;13(3):222—35. Polit DF, Beck CH. Nursing research: generating and assessing evidence for nursing practice. 8th ed. Philadelphia: Wolters Kluwer/Lippincott Williams & Wilkins; 2008. Rotondi AJ, Chelluri L, Sirio C, Mendelsohn A, Schulz R, Belle S, Im K, Donahoe M, Pinsky MR. Patients’ recollection of stressful experiences while receiving prolonged mechanical ventilation in an intensive care unit. Crit Care Med 2002;30(4): 746—52. Russell S. An exploratory study of patients’ perceptions, memories and experiences of an intensive care unit. J Adv Nurs 1999;29(4):783—91. Samuelson KAM. Unpleasant and pleasant memories of intensive care in adult mechanically ventilated patients — findings from 250 interviews. Intensive Crit Care Nurs 2011;27: 76—84.
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
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Intensive care patients’ perceptions of how their dignity is maintained Schou L, Egerod I. A qualitative study into the lived experience of post-CABG during mechanical ventilator weaning. Intensive Crit Care Nurs 2008;24:171—9. Stein-Parbury J, McKinley S. Patients’ experiences of being in an intensive care unit: a select literature review. Am J Crit Care 2000;9(1):20—7. Stubberud DG. Pasientens psykososiale behov. In: Gulbrandsen T, Stubberud DG, editors. Intensivsykepleie [Intensive nursing care]. 2nd ed. Oslo: Akribe AS; 2010. p. 55—76. Stubberud DG. Psykososiale konsekvenser av å være akutt og kritisk syk. In: Stubberud DG, editor. Psykososiale behov ved akutt og
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kritisk sykdom [Psychoscial needs in acute and critical illness]. Oslo: Gyldendal Norsk Forlag AS; 2013. p. 13—41. Söderberg A, Gilje F, Norberg A. Dignity in situations of ethical difficulty in intensive care. Intensive Crit Care Nurs 1997;13: 135—44. Turnock C, Kelleher M. Maintaining patient dignity in intensive care settings. Intensive Crit Care Nurs 2001;17:144—54. Wang K, Zhang B, Li C, Wang C. Qualitative analysis of patients’ intensive care experience during mechanical ventilation. J Clin Nurs 2008;18:183—90.
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Intensive and Critical Care Nursing (2015) xxx, xxx—xxx
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/iccn
ORIGINAL ARTICLE
Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study Ellen Klavestad Moen a,∗, Dagfinn Nåden b a
Østfold Hospital Trust, Research and Innovation, Box 16, N-1603 Fredrikstad, Norway Department of Nursing, Faculty of Health, Oslo and Akershus University College of Applied Sciences, Box 4, St. Olavs Plass, 0130 Oslo, Norway
b
Accepted 13 March 2015
KEYWORDS Dignity; Critical care nursing; Intensive care patient; Patient experiences
∗
Summary Aim: The aim of the study was to acquire knowledge of what contributes to maintaining and promoting the dignity of intensive care patients. Method: The study takes a phenomenological approach, and the method of data collection is qualitative research interviews. The participants consist of seven former intensive care patients. The analysis was carried out by means of Giorgi’s phenomenological analysis strategy. Findings: Being seen and heard and having one’s wishes and needs attended to are parts of dignified care. Personal and individual nursing was essential, as well as the extra involvement beyond what was expected. Being helpless and having to be cared for was unpleasant and degrading. The experience of being unable to speak could cause demeaning situations. Being met with respect was the essence of having one’s dignity maintained and promoted. The sense of being treated as an object was the essence of experiences that inhibited dignity. Conclusion: The findings indicate that the intensive care patients’ experience of having their dignity maintained in an intensive care unit is good, despite a high-tech, busy environment. There is also potential for improvement in several areas. Awareness, moral integrity and demeanour are central to dignified patient care from the perspective of intensive care patients. © 2015 Elsevier Ltd. All rights reserved.
Corresponding author. Tel.: +47 90794145. E-mail addresses: [email protected] (E.K. Moen), dagfi[email protected] (D. Nåden).
http://dx.doi.org/10.1016/j.iccn.2015.03.003 0964-3397/© 2015 Elsevier Ltd. All rights reserved.
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
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Implications for clinical practice • Encountering the intensive care patients with respect is essential to preserve the intensive care patients’ dignity. • Awareness, moral integrity and demeanour by the intensive care nurse are central to dignified intensive patient care. • In a high technology environment it is crucial to be aware of the balance between care and technological operational tasks.
Introduction Intensive care patients are in a context where they may be comatose and on mechanical ventilation. They receive medical treatment and care in an advanced, technological and busy environment. With such complex treatment there is a risk that the medical treatment and technological equipment take too much of the nurses’ attention, at the expense of the patients’ psychosocial needs. Attention to the dignity of patients may be under pressure, which may give them a feeling of dehumanisation (Calne, 1994). Intensive care patients may lose control over their situation because of the injury, illness and treatment, be prone to reduced autonomy and integrity and be excluded from communication (Stubberud, 2010, 2013). Intensive care patients now tend to be kept awake during mechanical ventilator treatment (Karlsson, 2012), which may increase their possibility of subsequent recollection of the intensive care treatment. Patients’ experiences of dignified care must therefore be considered vital in research and development of knowledge about nursing in an intensive care unit.
Background Dignity is a fundamental value in nursing; maintenance of patients’ dignity is an ethical responsibility for caregivers. The concept has many dimensions and encompasses behaviour, manner and even status. The word dignity is derived from the latin dignitas, meaning worthy. Dignity and worthiness are thus related, but not identical concepts (Edlund et al., 2013; Eriksson, 1996, 2006). Man’s dignity is both absolute and relative. Absolute dignity is given to man from creation and is infinite and impossible to renounce. Absolute dignity is reflected as traces in the relative dignity in an inner ethical and an external aesthetic dignity. The inner dimension consists of internalised ethical attitudes giving each person an awareness of dignity in oneself and others. The external aesthetic dignity reflects dignity in action and is created in relations with others. This relative dignity can be broken down and erased, but it can also be reinstated and recreated (Edlund, 2002; Edlund et al., 2013; Eriksson, 1996, 2006). The following literature review shows that research focusing on the dignity of intensive care patients is sparse. However, several studies discuss the experience of former intensive care patients, where the issue of dignity is touched on and feelings of dehumanisation are uncovered. Essential elements of former intensive care patients’ experience, according to Gjengedal (1994) were a loss of voice, the importance of personal relations, anxiety and insecurity, disorientation to time and a changed sense of their body. According to Russell (1999) the most important
change was the close monitoring by means of medical technical equipment while nursing staff gave patients a sense of safety. Good communication between patients and nurses was perceived as therapeutic and reassuring, while a lack of communication was a burden. From different perspectives similar findings have been reported by Almerud et al. (2007), Fredriksen and Ringsberg (2006), Hofhuis et al. (2008), Karlsson and Forsberg (2008), McKinley et al. (2002), Schou and Egerod (2008). Vulnerability and unpleasant experiences increased if the staff were not forthcoming. Wang et al. (2008) concluded that an intensive care unit should be a place where patients are treated as individuals, not just a place for survival. The patients in Samuelson’s (2011) study had both unpleasant and pleasant recollections of their stays in the intensive care unit, including care involving staff with unsatisfactory behaviour and attitudes. Lack of respect and attention and indifferent care were reported. The same study also described cases of exceptional behaviour and attitudes among staff, emphasising their sympathetic personality, attitude and conduct. Being awake during ventilator treatment involves being painfully aware that one is dependent on others, being voiceless and helpless. It is possible for patients to endure the situation if they have nurses who assist them, are attentive to their expressions, remain alert to their needs and do not leave them (Karlsson, 2012). The literature review shows that research focusing on the dignity of intensive care patients is scant. Although there are several studies where former intensive care patients tell about their experiences of being cared for in intensive care units, and where dignity experiences are mentioned in the results, few studies have been carried out where the main focus is on patients’ experiences of preserving their dignity. We identified a need for a study such as the present one to be carried out.
Aim The aim of the study was to acquire knowledge of what contributes to maintaining and promoting the dignity of intensive care patients. This gave rise to the following overarching research question: what are the experiences of former intensive care patients of having their dignity upheld during their stay in the intensive care unit?
Method The study takes a phenomenological approach (Giorgi, 1985). Phenomenology is concerned with understanding social phenomena from the person’s own perspective and descriptions of the world as it appears to them, from the
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Intensive care patients’ perceptions of how their dignity is maintained understanding that the real reality is what people perceive (Kvale and Brinkmann, 2009). The design is phenomenological and exploratory due to the lack of previous studies on the topic (Brink and Wood, 1998; Giorgi, 1985). Individual research interviews were conducted.
Setting and participants The study was carried out at an average-size intensive care unit in Norway accommodating eight patients. The unit treats an average of 550 patients a year. The inclusion criteria were that patients must be at least 18 years old, they must have stayed in the intensive care unit for at least five days over the past year, they must be competent to consent, proficient in Norwegian, oriented to time and place and willing to participate. The interviews were carried out on the same day as the former intensive care patients came for a follow-up consultation. Ten persons were asked, three did not wish to participate. The participants thus consisted of seven former intensive care patients, four men and three women. The number of days in the unit and on the mechanical ventilator varied. There was also great variation as to how much the participants remembered about their stay.
Data collection The interviews took place between 5 and 12 months after the patient had been discharged from the intensive care unit, and were conducted in the same room where the follow-up consultation had taken place. The interviews lasted between 20 and 60 minutes. A thematic conversation guide designed for the current study was used. Open questions were asked, with the possibility of follow-up questions to enable informants to recount their experiences as freely and openly as possible. The interviews focused on the following themes: experiences related to autonomy, integrity and communication, considerations of the phenomenon of dignity and also experiences related to dignity being inhibited or promoted. A tape-recorder was used during the interviews. The recordings of the interviews were later transcribed by the first author. The written text became the material for the subsequent text analysis.
Table 1
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Analysis The analysis of the transcribed interviews was conducted according to Giorgi’s phenomenological analysis strategy (1985). This analysis consists of four steps: developing a sense of the whole, identifying meaning units, abstracting the content of individual meaning units and finally synthesising the significance of the meaning units. In the first step of the analysis, the whole interview was read several times to give the researcher an overview of and familiarity with its content. In the next step the interview was re-read to identify meaning units from the perspective of caring science (Eriksson, 1996, 2006) and with a focus on the issue under study. The text was divided into smaller units and reduced somewhat. Changes in the text were detected, to form a basis for meaning units. The identification of meaning units was spontaneous, without much reflection on the meaning of each unit. In the third step the meaning units were transformed into a reduced text. The transformation was achieved by a process of reflection and use of the ‘‘free imaginative variation method’’ (Giorgi, 1985): ‘‘The intent of the method is to arrive at the general category by going through the concrete expressions and not by abstraction or formalization, which are selective according to the criteria accepted’’ (Giorgi, 1985, p. 17). In the fourth step, a specific description of the phenomenon was formulated, based on the transformed meaning units expressed by each informant. Essential topics were identified, to form the fundamental pattern of the essence of all the interviews. Further, a general description of the phenomenon was formulated based on the pattern and the synthesis of the statements of all the informants, which in turn formed superordinate themes and results (Table 1). The analysis required a constant to-ing and fro-ing in the material by the researcher. Views from all the informants described and substantiated the themes arrived at. According to Källerwald (2007) an open attitude to the phenomenon under study is central to phenomenological research. The greatest threat to the openness is pre-conception and a rash and unconsidered understanding by the researcher. During the analysis the researchers strove to be conscious of their pre-understanding and to bracket and bridle it, so that nuances, variation and new insight into the phenomenon of dignity could be foregrounded. The researchers discussed the themes until consensus was obtained.
From meaning unit to theme.
A. Meaning unit
B. Reduced text
C. Specific/general description
D. Theme
Not used to receiving care from others
The informant says that it was strange to be looked after by others. He felt it was strange at first to have his body washed by others, but thought this was how it must be, and accepted it
The informant thought it was strange to have his body washed by others. He had no possibility of doing it himself, so he had to accept the situation. He got used to it after a while, and said it was OK
Letting the carers take over
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Ethical considerations The study was approved by Regional Ethical Committee (REK), and permission to carry out the study was obtained from the head of research at the hospital in question. The former intensive care patients who participated in the study were informed in writing about the purpose of the study as well as potential advantages and drawbacks of participating. Anonymity and confidentiality were assured. Information was distributed with a consent form that had to be signed by each participant. The participants were told that they could withdraw from the study at any point.
Findings The essence includes five themes concerning dignity for the intensive care patient: (1) being heard and seen, (2) letting the carers take over, (3) frustration about inability to speak, (4) being respected, and (5) feeling violated.
Being heard and seen The participants felt that their wishes and needs were largely attended to. Requirements concerning care and personal hygiene were most often met. When nursing staff spent some time surveying the patients’ wishes and needs, patients had a good experience. They felt that their individual needs were taken care of and that their views on the care were heard. ‘‘It was good to be in intensive care. Whenever I had a question, I was heard immediately’’ (Participant 3). The participants recounted experiences in which the nurses understood their needs without them having to ask, and such experiences were positive. Examples were nurses washing the patients’ hair, giving extra care, or lotioning their hands and feet. Such things made the patients feel better, more well-tended and well taken care of. The participants also felt that the nurses were present and available all the time. ‘‘The nurses in the intensive care practically never left my bedside. I see them as angels’’ (P.1). The nurses had realised the challenges of seeing the intensive care patients as individual people. Several patients had felt unable to communicate, and since they could not speak, they thought it must be difficult for the nurses to understand who they were as persons. Despite this challenge, they felt that the nursing staff had seen them and became acquainted with them. ‘‘I was treated properly, of course, there was never a problem about that. In the intensive care unit I was seen as a person, but not in the general ward’’ (P.3). The participants had experiences in the intensive care unit that corresponded to their expectations, but also felt that some of the nurses had given more care and support than expected. Some informants referred to this as ‘‘a little extra’’, which increased the sense of receiving good and dignified care.
‘‘I reacted very positively when one of these nurses said that we’re going to wash your hair. . . She just saw and understood. . . I liked her very much after that. . . Maybe she had been in the same situation herself, I don’t know. Because that’s perhaps what makes you think about it, if you’ve been a patient . . . or next of kin. You know, you sense that they do a little extra for the patients’’ (P.4). Some factors of the situation led to wishes and needs not always being met. One of these was that the patients could not communicate verbally, which made it difficult to express their wishes and needs, such as wanting care. Another factor related to resources in the ward. Some of the informants sometimes wished to get out of the bed and into a chair, but could not always do this when they wanted because there were not enough nurses to help them move. Participants described negative experiences where they felt forced to participate in activities against their will. These were particularly activities related to exercise and mobilisation where patients were forced to exercise even if they felt too weak. However, they understood with hindsight that the exercising was for their own good, and that the nurses had put pressure on them to make them better. ‘‘You felt a bit patronised when they just took off the ventilator and put on the speaking valve. I felt like I’d been out running and was completely exhausted. You don’t want to start over again then. But you were forced to go on, and when you’d finished, you were even more exhausted, and fell asleep just like that’’ (P.3). Situations where the patients were not heard were described as bad and difficult. The bad experiences faded with hindsight and the realisation that the nurses’ intention was that the patients should recover. ‘‘I felt a little bit patronised sometimes, but I think that was for my own good’’ (P.6).
Letting the carers take over The participants said they felt so ill and helpless that they were forced to leave all or most of their care to the nurses. Most of the informants said they were unused to receiving care from others. Their intimate space was violated, and they described this as unpleasant, embarrassing, horrible and humiliating. Some informants also felt sorry for the nurses who had to look after them. ‘‘It was really unpleasant to receive care at first. Anyone would react to that, because it’s not normal. But then you understand that it’s necessary, you can’t do it yourself. And then somebody else has got to do it. In the end you appreciate it a lot’’ (P.5). The participants said they had developed strategies for getting used to receiving care from others. Some stared at the ceiling and tried to think of something else, and some felt it was of great help if the nurses as well as the patients themselves could make use of humour about the caring situation. When the nurses gave care in a respectful manner, it was easier to receive it. Several participants thought it was important that the nurses approached them judiciously, not doing things without asking first. It was also important that
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Intensive care patients’ perceptions of how their dignity is maintained the nurses gave the care as a matter of course, not showing any signs of disgust, particularly when the patient needed intimate washing. The fact that nurses did not show any negative signals during caregiving, helped the participants perceive the situation as less stressful. ‘‘The nurses, quite incredible. Looking after you and caring for you and. . . When the digestion started working, it was just pouring out. And I thought that was terrible, because they had to get both me and the bed changed all the time. But they did not seem bothered at all. They just said, ‘‘Fantastic, that means that your bowels have started working’’ (P.1). Being protected was also vital for the patients to feel that care was less uncomfortable. Some participants said that they were always covered during the nursing care, and felt that their personal sphere was being respected. One participant, however, said he had felt like he was on show during the care-giving, and that this was humiliating because other people were entering his room where he lay, also under the care. Another participant described strong, negative experiences related to the medical rounds. He recollected that the doctors came into the shared room, over to his bed, removed the duvet, took a look at his sick, naked body and left. He felt objectified and humiliated, and thought these doctors had no idea about dignity. ‘‘The doctors do not think about the patients’ dignity. Because there I was, with no clothes or trousers and the doctors just came in and threw off the duvet to take a look. They did not think of pulling the curtain. I felt like dirt. It’s stuck in my mind. It was humiliating to lie there on show for anyone to see. There was a great difference between the doctors and the nurses, because the nurses pulled the curtains every time’’ (P.1).
Frustration about inability to speak
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‘‘What I thought was worst was that I couldn’t talk when I had that plug in my throat, when I hadn’t got the speaking valve yet. I thought that was horrible. For instance, my legs hurt a lot, and especially when they were going to turn me around, some of them were quite heavy-handed. And it was painful. So getting that message through was difficult, I thought’’ (P.4). Most of them had developed a technique for communicating, some using a letter board and others blinking or issuing simple sounds. This was time-consuming, and there was a great risk of miscommunication between patients and nurses. ‘‘When I got the speaking valve, I felt that I could talk properly and that I was myself again. I wanted to have the speaking valve practically all the time. Then I felt I got my way, or at least they understood what I was saying’’ (P.7). Getting their voice back gave them a feeling of being a more complete person, more free and autonomous.
Being respected For intensive care patients to be shown respect by the staff turned out to be an essential feature of the patients’ descriptions of dignity. Being respected as a patient had several facets. The importance of meeting the patient’s individual needs was emphasised, and it was essential that the nursing staff asked the patients and their families what were their individual wishes and needs. Spending time on this was perceived as very important. Addressing the intensive care patients with simple yes-no questions could make it easier for them to respond when they were connected to the ventilator. ‘‘What can promote dignity is that the staff think about your well-being all the time, and that they ask you about your needs at every turn. That you don’t lie there feeling like a pain’’ (P.1).
Not being able to communicate as usual was perceived as unpleasant and problematic. The participants expressed that it had been difficult to communicate when they had a tube in their mouth or had a tracheostomy and were connected to a ventilator. The staff had made an effort to understand what the patients were trying to express, but often the message that the patients were trying to communicate was not understood.
Nurses who were genuinely concerned with the patients and the treatment of them promoted dignity. The patients then felt valued and respected. Some participants were concerned that the patient should have a feeling of well-being, because the feeling of well-being was associated with dignified patient care. Another way of showing consideration for the patients and make them participate was to give information about what was going to happen in the next hour or day.
‘‘I was frustrated and annoyed because I couldn’t talk. I wished there was a machine that could read my mind’’ (P.5).
‘‘You feel more dignity if they give you information continuously, and maybe repeat it too. Because it’s important that you’re part of the team. That you’re not just an interesting case lying there’’ (P.4).
Inability to communicate their need for necessary care was perceived by the participants as one of the most frustrating issues. Several described feelings such as helplessness, but also anger and irritation. Several participants felt frustration at being unable to inform staff about their pain and how to deal with it. Their bodies often hurt, and turning in bed was therefore a problem. The patients could not tell the nurses where to touch or not to touch them to lessen their pain while turning them in bed.
Good dialogue between the staff and the patients was highlighted as part of dignified care. Some of the participants greatly appreciated the use of humour. This could make difficult situations easier to deal with and contribute to a confidence that the staff strove to improve the situation for the patient. The staff should also be supportive and encouraging for the intensive care patients, since the patients were in a very
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vulnerable situation, and could have low self-esteem in their current state. ‘‘It promotes dignity. . . to be praised for what little you can do. Even if it’s not much, it can help your confidence. Because my confidence wasn’t sky-high, to put it like that. . . I felt small and helpless, I really did’’ (P.5).
Feeling violated Patients could feel violated if they were not heard and seen by the nursing staff. The informants thought there was a great risk of this when they were unable to speak. ‘‘It’s easy to feel patronised when you can’t talk’’ (P.2). To have decisions taken for you was an experience that did not promote dignity. Patients felt violated if the staff patronised them with regard to their individual wishes and needs. This could contribute to the patient feeling that he was seen as an object rather than the person he was. Being exposed during care and examinations was objectifying and was perceived as an act of violation. ‘‘I remember that these open curtains felt humiliating. There was a man just across from me and he could see every day how I was exposed’’ (P.1). Condescending attitudes from the staff were also perceived as undignified treatment. This was connected to disempowerment. A lack of involvement from the staff was also mentioned as a factor demoting dignity. Participants said that being a helpless patient in intensive care was humiliating in itself. Being dependent, being nursed, fed and cared for by others was demeaning. ‘‘Experiences that demote dignity are that you are nursed, fed and given medication. It’s a clear sign that you can’t take care of yourself. It doesn’t boost confidence’’ (P.5). The feeling of not being self-sufficient, and being totally dependent on help was difficult and overwhelming. It felt demeaning, but they had no other choice than living with it. Informants said that it was difficult and frustrating to be weak and helpless and unable to help yourself when you were usually self-sufficient. This lowered self-esteem and the feeling of vulnerability was massive. In this connection one participant said: ‘‘I felt trapped in a sad way’’ (P.5).
Discussion Being heard and seen by the nursing staff as patients in intensive care provided good experiences of wellbeing for the participants. If nurses responded when patients expressed a need and acted on it patients felt well taken care of. This is a finding of other studies too (Almerud et al., 2007; Karlsson, 2012). Almerud et al. (2007) described intensive care patients feeling like objects and invisible as human beings and Karlsson (2012) described how ventilator patients who were awake struggled to be independent and authoritative, and who thought it positive if they had a sense of community with the nurses. This gave a sense of security,
and the patient felt like an important person with an identity. Being heard and seen are associated with confirmation and invitation. Being seen as a patient confirms the patient’s value as a human being (Nåden and Eriksson, 2004). When patients are invited into a community they feel welcome into the relation. In this study, some nurses were described as doing a little extra. By this, the informants meant that these nurses were genuinely interested in their patients and they were involved in the treatment of them. Doing the little extra for patients entails a power to embrace the patients’ dignity because they feel that they are given compassionate care and feel valued (Arman and Rehnsfeldt, 2007). The ability to see a suffering person who needs to be met with warmth and compassion and thereby helping relieve the suffering contributes to maintaining the patients’ relative and absolute dignity (Edlund, 2002; Edlund et al., 2013). The experience of letting the carers take over was overwhelming to several informants. At the same time they accepted the situation and expressed a willingness to receive help. Such experiences are also described in other studies. The sense of being dependent on others was described as stressful, burdensome and existential (Fredriksen and Ringsberg, 2006; Gjengedal, 1994; Hofhuis et al., 2008; Holland et al., 1997; Karlsson, 2012; Karlsson and Forsberg, 2008; McKinley et al., 2002; Samuelson, 2011; Wang et al., 2008). For an intensive care patient who is dependent on others the feeling of dependence and helplessness will be influenced by the patient-nurse relation. From different perspectives the significance of this relation is highlighted by for example Fredriksen and Ringsberg (2006), Hofhuis et al. (2008), Holland et al. (1997), Stein-Parbury and McKinley (2000). The relation requires consideration and moral awareness on the part of the nurse. Receiving care from others was an unpleasant experience for all the participants. They considered it humiliating to lose their personal sphere. Russell (1999) reports similar findings. The loss of privacy was described as a disturbing experience. Lawler (1996) maintains that it is fundamental to help patients overcome their embarrassment about bodily care during illness when the situation demands it. A lack of acknowledgement that the patient may feel ill at ease can reduce the patient to an object. Being undressed and having their bodies exposed was an experience that was described as humiliating in the present study. According to Edlund et al.’s (2013) model of dignity, the informants’ relative dignity was torn down when the patients were being exposed. Attempts were made to restore their dignity when the nurses became aware of the situation and tried to prevent the exposure of the patient’s body. Intensive care patients feeling uncovered and exposed were also described in an observational study by Turnock and Kelleher (2001), who found that the private parts of intensive care patients were exposed in over 40% of the cases. Being unable to speak created unpleasant and taxing experiences, which has also been found in other studies (Gjengedal, 1994; Karlsson, 2012; Rotondi et al., 2002; Schou and Egerod, 2008; Stein-Parbury and McKinley, 2000) where former intensive care patients describe this as
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
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Intensive care patients’ perceptions of how their dignity is maintained stressful, inhibiting, painful and difficult. Inability to communicate their needs could cause negative situations for the participants, such as staying unattended to. Inadequate communication could lead to care-related suffering because of insufficient care, which is a violation of a person’s relative dignity, the inner as well as the external dimension (Edlund, 2002; Edlund et al., 2013; Eriksson, 2006). When patients are unable to speak normally, it is essential for nurses to make an effort to understand the patients and spend time finding alternative forms of communication. Previous studies show that successful communication between the intensive care patient and the nurse is vital to good patient treatment in intensive care (Karlsson, 2012; Russell, 1999; Schou and Egerod, 2008). When patients in the present study regained their voice, they felt more whole as persons, and they could take part in decision-making regarding their treatment and care. This was also found by Karlsson (2012). Being respected was the essence of dignity for the participants. Nelson et al. (2010) found that high-quality care in a palliative intensive care unit consisted, among other things, of consideration for the patient’s dignity. This included an aspect of respect and personal care, according to patients as well as their families. Nåden and Sæteren (2006) hold that confirmation is an essential part of nursing care, and that it facilitates personal growth and participation for the patients, thus contributing to the maintenance of their dignity. Providing sufficient information was another element in showing respect for the patient. This gave the patient the possibility of taking part in his treatment. The value of giving patients information has been described in earlier studies (Holland et al., 1997; Hupcey, 2000; McKinley et al., 2002; Wang et al., 2008). A good dialogue and good relations promoted dignity in the intensive care patient. Support and encouragement were perceived as good for confidence, as is also emphasised by Schou and Egerod (2008). A lack of stimuli and expectations maintain the patients’ sense of worthlessness (Karlsson and Forsberg, 2008). Seeing the patient, encouraging and supporting him can contribute to enhancing the patient’s self-worth. It was important for the participants that nurses had appropriate moral/ethical attitudes and were conscious of them. They claimed that nurses must look upon patients as complete individuals and not just as a diagnosis. An awareness of one’s moral integrity as a nurse must be central in patient treatment in intensive care. Abilities such as awareness, consciousness, personal responsibility, involvement, brotherhood and active defence of dignity are necessary requirements for nurses to counteract the risk of dehumanisation and demeaning care in an intensive care unit, according to Söderberg et al. (1997). Examples of demeaning actions that did not promote dignity were not being seen and heard, having one’s decision taken for one, and being patronised. Being treated like an object and not as a real person was also a demeaning experience. Previous research describe similar perceptions (Almerud et al., 2007; Karlsson and Forsberg, 2008; McKinley et al., 2002; Russell, 1999; Wang et al., 2008). A patient who is not confirmed and who is being patronised is exposed to care-related suffering, which violates the patient’s relative dignity. Nurses who either see or
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inadvertently participate in care and treatment, in which the patient is violated, also violate their own dignity (Eriksson, 2006; Nåden and Eriksson, 2004). Nurses can feel that their own values are being violated, and that the responsibility for the patient is diminished. A state of helplessness is described by the participants as a demeaning experience in itself. It created a sense of vulnerability, low self-esteem and of being trapped. Similar findings have been reported in studies by Hupcey (2000), Rotondi et al. (2002), Schou and Egerod (2008) and Wang et al. (2008). Independence and the ability to manage on one’s own can be important to dignity. When people fall ill, their bodies break down and they have to accept help, they may be left with a sense of degrading and shame, and an image of themselves as less valuable than before. The relative dignity is perceived as being violated. To reinstate a dignity that has been violated, one must accept the offer of help. One must be reconciled with a new situation and allow oneself to be dependent on others. A new form of dignity must be allowed to develop (Edlund, 2002; Edlund et al., 2013). Nurses surrounding the patient must facilitate this through respectful and accommodating care. To our knowledge, no previous studies have probed into former intensive care patients’ experiences regarding the maintenance of their dignity during their stay in an intensive care unit. The findings regarding factors promoting and demoting dignity, as well as what is the essence of dignified treatment in an intensive care unit, are considered new, and not accounted for by previous research.
Limitations of the study The participants are a relatively small group representing differences in gender and age, diagnosis and medical treatment, number of days on the ventilator, and different lengths of stay. What they have in common is that they have been ventilator patients in a high-tech intensive care unit. The different life experiences of the group may have influenced the findings, while also providing breadth to the material. The participants varied as to how much they remembered from their stay, but most remembered large parts of it. Their descriptions of their stay is thus from the times they can recollect. The medical state of the patient may also have influenced their input. The fact that the interviews were conducted some time after their discharge from intensive care may also have influenced the views they presented. To some extent their recollections may have changed character during this period. Experiences may have been reinforced, but also faded. There is also a risk that the researcher’s preunderstanding can affect the results (Källerwald, 2007). In this study the researchers made an effort to be aware of and bracket the pre-understanding, so that nuances, variation and new knowledge about the phenomenon dignity could emerge. Member checking was not performed formally after the data had been fully analysed, which might be viewed as a limitation. Member checking was, however, carried out during the interviews through deliberate probing to ensure that interviewer had understood the participants’ meanings (Polit and Beck, 2008).
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
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Conclusion The findings of this study show that experiences of being heard and seen and having one’s wishes and needs attended to were important elements in dignified treatment. That the nursing was personal and individual reinforced the patients’ sense of having his dignity preserved. Some nurses do the little extra, which meant that nurses were involved and genuinely concerned with patients beyond their expectations. This enhanced the patients’ sense of dignity. Being ill and helpless and receiving care from others was unpleasant and demeaning experiences. They threatened dignity, but the situation was acceptable and bearable if the relation between the patient and the nurse was marked by respect and openness. The inability to speak when connected to a mechanical ventilator was perceived by patients as difficult, and could cause degrading situations. The patients perceived it as a relief when they could speak again. Being respected was the essence of having one’s dignity maintained and promoted. An element of this was to be seen as a person, not as a case. The sense of violation was the essence of actions that demoted dignity. This included experiences of being treated like an object, and being patronised with regard to wishes and needs. Helplessness was perceived as degrading in itself.
Acknowledgements The authors are grateful to the former intensive care patients who participated in the study and shared their recollections and experiences from the intensive care unit. We are also grateful to Hilde Hasselgård, Dr. Art, University of Oslo, for her expert help in translation. Funding: The authors have no sources of funding to declare. Conflict of interests: The authors have no conflict of interest to declare.
Appendix A. Supplementary data Supplementary data associated with this article can be found, in the online version, at http://dx.doi.org/10.1016/ j.iccn.2015.03.003.
References Almerud S, Alapack RJ, Fridlund B, Ekebergh M. Of vigilance and invisibility-being a patient in technologically intense environments. Nurs Crit Care 2007;12(3):151—8. Arman M, Rehnsfeldt A. The little extra that alleviates suffering. Nurs Ethics 2007;14(3):372—86. Brink PJ, Wood MJ. Advanced design in nursing research. 2nd ed. Thousand Oaks: SAGE Publications Inc.; 1998. Calne S. Dehumanisation in intensive care. Nurs Times 1994;90(17):31—3. Edlund M. Människans värdighet: ett grundbegrepp inom vårdvetenskapen (Human dignity - a basic caring science concept) [Ph.D. thesis]. Åbo: Åbo Akademis Forlag-Åbo Akademi University Press; 2002. Edlund M, Lindwall L, von Post I, Lindström UÅ. Concept determination of human dignity. Nurs Ethics 2013;20(8):851—60.
Eriksson K. Om människans värdighet. In: Bjerkreim T, Mathisen J, Nord R, editors. Visjon, viten og virke [Vision, know-how and profession]. Oslo: Universitetsforlaget; 1996. p. 79—86. Eriksson K. The suffering human being. Chicago: Nordic Studies Press; 2006. Fredriksen ST, Ringsberg KC. Living the situation stress-experiences among intensive care patients. Intensive Crit Care Nurs 2006;23:124—31. Giorgi A. Phenomenology and psychological research. Pennsylvania: Duquesne University Press; 1985. Gjengedal E. [Dissertation] Understanding a world of critical illness. A phenomenological study of the experiences of respirator patients and their caregivers [Dissertation]. University of Bergen; 1994. Hofhuis JGM, Spronk PE, van Stel HF, Schrijvers AJP, Rommes JH, Bakker J. Experiences and critically ill patients in the ICU. Intensive Crit Care Nurs 2008;24:300—13. Holland C, Cason CL, Prater LR. Patients’ recollections of critical care. Dimens Crit Care Nurs 1997;16(3):132—41. Hupcey JE. Feeling safe: the psychosocial needs of ICU patients. J Nurs Scholarsh 2000;32(4):361—7. Karlsson V. [Ph.D. thesis] Att vårdas vaken på respirator — patienters och närståendes upplevelser från en intensivvårdavdelning [Being conscious during mechanical ventilator treatment — patients’ and relatives’ experiences in intensive care units] [Ph.D. thesis]. Gothenburg University; 2012. 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. Kvale S, Brinkmann S. Det kvalitative forskningsintervju [The qualitative research interview]. 2nd ed. Oslo: Gyldendal Norsk Forlag AS; 2009. Källerwald S. I skuggan av en hotad existens-om den onödiga striden mellan biologi och existens i vården av patienter med malignt lymfom [On the unnecessary battle between biology and existence in the care og malignant lymhoma patients] [Ph.D. thesis]. Växjö University; 2007. Lawler J. [Smith A-M, Trans] Bak skjermbrettene. Sykepleie, somologi og kroppspleie [Behind the screens. Nursing, somology and the problem of the body] [Smith A-M, Trans]. Oslo: Ad Notam Gyldendal AS; 1996 [original work published 1991]. McKinley S, Nagy S, Stein-Parbury J, Bramwell M, Hudson J. Vulnerability and security in seriously ill patients in intensive care. Intensive Crit Care Nurs 2002;18:27—36. Nelson JE, Puntillo KA, Pronovost PJ, Walker AS, McAdam JL, Ilaoa D, Penrod J. In their own words: patients’ and families define high-quality palliative care in the intensive care unit. Crit Care Med 2010;38(3):808—18. Nåden D, Eriksson K. Understanding the importance of values and moral attitudes in nursing care in preserving human dignity. Nurs Sci Q 2004;17(1):86—91. Nåden D, Sæteren B. Cancer patients’ perception of being or not being confirmed. Nurs Ethics 2006;13(3):222—35. Polit DF, Beck CH. Nursing research: generating and assessing evidence for nursing practice. 8th ed. Philadelphia: Wolters Kluwer/Lippincott Williams & Wilkins; 2008. Rotondi AJ, Chelluri L, Sirio C, Mendelsohn A, Schulz R, Belle S, Im K, Donahoe M, Pinsky MR. Patients’ recollection of stressful experiences while receiving prolonged mechanical ventilation in an intensive care unit. Crit Care Med 2002;30(4): 746—52. Russell S. An exploratory study of patients’ perceptions, memories and experiences of an intensive care unit. J Adv Nurs 1999;29(4):783—91. Samuelson KAM. Unpleasant and pleasant memories of intensive care in adult mechanically ventilated patients — findings from 250 interviews. Intensive Crit Care Nurs 2011;27: 76—84.
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
+Model YICCN-2381; No. of Pages 9
ARTICLE IN PRESS
Intensive care patients’ perceptions of how their dignity is maintained Schou L, Egerod I. A qualitative study into the lived experience of post-CABG during mechanical ventilator weaning. Intensive Crit Care Nurs 2008;24:171—9. Stein-Parbury J, McKinley S. Patients’ experiences of being in an intensive care unit: a select literature review. Am J Crit Care 2000;9(1):20—7. Stubberud DG. Pasientens psykososiale behov. In: Gulbrandsen T, Stubberud DG, editors. Intensivsykepleie [Intensive nursing care]. 2nd ed. Oslo: Akribe AS; 2010. p. 55—76. Stubberud DG. Psykososiale konsekvenser av å være akutt og kritisk syk. In: Stubberud DG, editor. Psykososiale behov ved akutt og
9
kritisk sykdom [Psychoscial needs in acute and critical illness]. Oslo: Gyldendal Norsk Forlag AS; 2013. p. 13—41. Söderberg A, Gilje F, Norberg A. Dignity in situations of ethical difficulty in intensive care. Intensive Crit Care Nurs 1997;13: 135—44. Turnock C, Kelleher M. Maintaining patient dignity in intensive care settings. Intensive Crit Care Nurs 2001;17:144—54. Wang K, Zhang B, Li C, Wang C. Qualitative analysis of patients’ intensive care experience during mechanical ventilation. J Clin Nurs 2008;18:183—90.
Please cite this article in press as: Moen EK, Nåden D. Intensive care patients’ perceptions of how their dignity is maintained: A phenomenological study. Intensive Crit Care Nurs (2015), http://dx.doi.org/10.1016/j.iccn.2015.03.003
