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Patient empowerment in intensive care—An interview study
Intensive and Critical Care Nursing (2006) 22, 370—377
ORIGINAL ARTICLE
Patient empowerment in intensive care—–An interview study Ingrid W˚ ahlin a,b,∗, Anna-Christina Ek b, Ewa Idvall b,c a
Department of Planning and Development, Administration Office, Kalmar Hospital, Sweden Department of Medicine and Care, Division of Nursing Science, Faculty of Health Sciences, Link¨ oping University, Sweden c Research Section, Kalmar County Council, Sweden b
Accepted 5 May 2006
KEYWORDS Critical care; Empowerment; Experiences
Summary Intensive care patients often experience a lack of control, as well as inner chaos. Experiences from intensive care can continue to affect patients for a long time. Empowerment is a positive and dynamic process that focuses on people’s strengths, rights and abilities. It takes on different expressions for different people in different environments and must be described by the people involved. The aim of this study was to describe patient empowerment in an intensive care situation. The study was based on open-ended interviews with 11 patients in two intensive care units. The interviews were analysed according to the empirical phenomenological psychological method. The results showed that patient empowerment in intensive care consists of strengthening and stimulating the patients’ own inherent joy of life and will to fight. A positive environment that encouraged feelings of value and motivation and in which the patient felt safe, received additional care and participated as he/she wished had a positive influence. © 2006 Elsevier Ltd. All rights reserved.
Introduction It is known that critically ill patients often experience a lack of control, as well as inner chaos (Cornock, 1998; Granberg et al., 1998). Several studies show that intensive care patients are very sensitive to the attitudes and behaviours of staff, who may either increase patients’ anxiety and ∗ Corresponding author at: Orkesterv¨ agen 12, 382 34 Nybro, Sweden. Tel.: +46 480 448851; fax: +46 480 448877. E-mail address: [email protected] (I. W˚ ahlin).
vulnerability or make them feel more safe and confident (Holland et al., 1997; Laitinen, 1996; Mc Kinley et al., 2002). Patients’ experiences of powerlessness, lack of knowledge/information, vulnerability, defencelessness, anxiety and distress (Hafsteind´ ottir, 1996; Mc Kinley et al., 2002; Russell, 1999) may contribute to developing acute confusion, often called intensive care confusion or delirium (Geary, 1994). This condition generates increased psychological suffering (Dyer, 1995), but can also affect the duration of hospitalisation as well as mortality (Geary, 1994). Experiences from
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Patient empowerment in intensive care intensive care may affect patients several months after leaving the hospital (Russell, 1999). Empowerment has recently been described in relation to self-care in chronic illness such as diabetes (Adolfsson et al., 2004; Fullnell et al., 2005) and cancer (Chang et al., 2004). There is no unambiguous way of describing empowerment, since expressions differ from person to person and within organisations (Wallerstein and Bernstein, 1988). In social theory, empowerment refers to social and political phenomena concerning unprivileged groups (e.g. ethnic groups, homosexuals, immigrants, women, and patients) and their ability to control their own lives (Ward and Mullender, 1991). Organisational and management theories focus on organisation structure, and power is associated with standing and ability to get things done. In this environment, empowerment is described as a process in which power is distributed within the organisational hierarchy from the top down, with increased production and effectiveness as a result (Kanter, 1979). In social psychological theory, empowerment is seen as a process of personal growth and development. Power is generated in relationships with other people through individuals’ behaviour and actions. The ability to acquire information is an important prerequisite of empowerment (Kuokkanen and Leino-Kilpi, 2000). Rappaport (1984) regards empowerment as easy to define in its absence: powerlessness, helplessness, alienation, loss of sense of control. It is more difficult to define positively because it takes different forms in different people and contexts, and thus must be described by the person involved. Empowerment is seen as a dynamic process in which power is shared, i.e. both yielded and received (Hegar and Hunzeker, 1988). Empowerment is a concept that is fundamentally positive, referring to solutions, rights and possibilities rather than to problems and requirements. An empowered person does not pretend to have more power but instead feels more powerful (Kieffer, 1984). Empowerment can be seen as both a process and a result (Gibson, 1991), and is independent of a specific time or place (Reynolds, 1971). In a general sense, empowerment is viewed as a process through which people, organisations, and communities gain mastery over their own lives (Rappaport, 1984). Empowerment focuses on people’s strengths, rights and abilities, as opposed to paternalism, which means that others take the liberty of decision (Gray, 1999). As described before, intensive care patients often experience feelings such as powerlessness, a lack of knowledge/information, vulnerability, anxiety and distress. For this reason it is important to acquire more knowledge
371 about the actions and attitudes that can strengthen their experience of empowerment. Hopefully, this can facilitate the patients’ wellbeing and recovery. A social psychological viewpoint (Kuokkanen and Leino-Kilpi, 2000) and a philosophically grounded idea of equality, that everyone is of equal value and should have the opportunity to decide on one’s own, and thus participate and exert influence (Renblad, 2003), is close to nursing, which is the perspective in this study. The aim of the study was to describe patient empowerment in an intensive care situation. The questions posed concerned the intensive care patients’ experiences of involvement and participation in decision-making as well as their experiences of increased strength and power.
Method When an exploration of meanings of social phenomena as experienced by individuals themselves is undertaken, qualitative research methods are appropriate (Malterud, 2001). These methods attempt to deal with the issue of human complexity by exploring it directly. The inherent human complexity is emphasized, the truth is seen as a composite of realities, and investigations place a heavy emphasis on understanding the human experience as it is lived (Polit and Hungler, 1999). A phenomenological approach was used in the study. Eleven individuals who had spent three or more days in an intensive care unit (ICU) participated in the study. The selection of subjects was performed in collaboration with intensive care nurses, working at general ICUs in two hospitals, which included one county hospital (small sized hospital) and one central county hospital (medium sized hospital) in southern Sweden. A purposeful sampling was used, seeking information from participants with different diagnoses, ages, days in ICU and gender, so that the range of experiences and breadth of the phenomenon could be understood (Coyne, 1997). Patients were excluded if they were younger than 18 years of age or did not speak Swedish. Selected patients received written and verbal information on the study and an application to participate. The interviews were conducted during 2004—2005 by the first author in a quiet room in the hospital, in the participant’s home or in another place according to the participant’s wish, between 4 and 30 days after the patient had left the ICU. The time lapse between discharge and interview depended on the participant’s condition, preferences and practical reasons.
372 Table 1
I. W˚ ahlin et al. Step three illustrated (assumed name)
Meaning unit
Transformed unit
1. R: Yes, I do think that I felt more comfortable with some than with others. It . . . but it may have something to do with personal chemistry. You have more confidence and feel more for one than another, but it is, as I said, I think most of them were very good 2. I: Those you felt extra good with, what do you think they do or have? R: Yes, you felt that they cared perhaps a little bit more, they were more like you were not just a patient, but something more. A bit closer or what I should say, not only yes, yes, but of course we will help you and, yes it is difficult to explain, but I experience them as more good, like it was no problem for them, I guess
1. Irene felt more confidence with some of the staff than with others. She thought that this may have something to do with personal chemistry
3. There were some who you felt that you more or less troubled, just because you were in pain, and perhaps wanted an injection. And that . . . but it was only a few. No names. But most of them were quick to say of course we will help you, and you felt that they cared, I guess 4. I: How did they show that they cared? R: Well, it is only something you feel, really, it is just their way of being. Perhaps only that they gave you a pat, or touched your hair or, yes showed some tenderness I guess, or something like we’ll take care of that, and like that. You feel that you mean something, something more I guess. You noticed that they were just as nice to others too, and that it was their manner to be that way, and that, that felt comfortable. It felt a bit more like of course we will do that
3. Irene felt that she bothered a few of the staff when she asked for analgesic
5. Yes, as I say, everyone is so busy and has so much to do, but to give someone a small pat does not take that much time but means so much. For the person who is lying there, it means very much to feel that someone sympathizes with you. And then wants to help you. Yes like that
5. Irene thinks that giving someone a small pat does not take much time, but it means a great deal to feel that someone cares and wants to help
2. Irene felt that some of the staff cared more and came closer, and she never felt that she was bothering them
4. Some of the staff showed that they really cared about her by, e.g., showing tenderness. This made Irene feel that she was more than just a patient
I: interviewer, R: respondent, figures express different meaning units.
The interviews were initiated by an open question, by which the patients were asked to tell about their experiences from the ICU regarding events, thoughts and feelings. Areas covered were experiences of involvement and participation in decision-making, as well as experiences of increased strength and power. Follow-up questions like ‘‘what did you feel’’, ‘‘what did you think’’ and ‘‘can you tell me more about. . .’’ were used. The interviews, which lasted between 30 and 80 min, were audio taped and transcribed verbatim. Since the aim of the study was to describe empowerment as it was lived and experienced by the ICU patients, a phenomenological approach according to the empirical phenomenological psychological (EPP) method was chosen. The method is grounded in Husserl’s phenomenological philosophy and was developed by Karlsson (1995).
In accordance with Karlsson (1995), the analysis of the transcribed interviews was conducted in five steps. First, the transcripts were read until ‘‘a good grasp’’ of the whole was obtained. The text was then discriminated into smaller units, called meaning units (MUs). The MU did not follow linguistic grammatical rules, but instead divided the text where the researcher discerned a shift in meaning. Each MU was transformed into the researcher’s language (nursing), i.e. the spoken, everyday language of the respondent was translated into the written language of the researcher and was transformed into a new text that better summed up the meaning of that particular MU. A piece of text divided into MUs and transformed units are shown in Table 1. The transformed MUs were synthesised into ‘‘situated structure’’, one for each interview. The situated structure represented a noetic (subjective) descrip-
Patient empowerment in intensive care Table 2
373
Informants’ characteristics
Respondent
Days in ICU
Age
Days with respirator
Perceived diseases
1 2 3 4 5 6 7 8 9 10 11
6 5 41 3 5 10 9 8 4 4 35
59 74 75 28 68 74 61 83 51 48 60
— — 30 1/2 — 3 — — — 2 days with track 21
Lung cancer Intestinal bleeding Respiratory disease Multiple trauma Respiratory disease Neuromuscular disorder Aorta perforation Sepsis Appendicitis with perforation Respiratory obstruction Pneumonia
tion of how patient empowerment in an intensive care situation was lived. All 11 situated structures were then synthesised into a general meaning structure, demonstrating the noematic (objective) side of the phenomenon. Though a condensation to only one structure was found to be too abstract, different types of meaning structures reflecting individual variation (typological structure or themes) were also analysed (Karlsson, 1995).
Ethical considerations All patients received verbal and written information on the study, and gave their informed consent to participate. They were able to choose the time and place of interview and hade also the opportunity to stop the interview if they became exhausted or distressed. The interviewer was not involved in the care of the patients, but was an experienced ICU nurse. The participants were informed that all information were handled confidentially and that no specific individual would be recognizable in the final result.
Results The respondents represented a heterogeneous group and consisted of six men and five women. Their ages ranged from 28 to 83 years and their ICU length of stay was between 4 and 35 days. Five of the 11 participants had been treated with a respirator. Information about the participants is shown in Table 2. In the results, one of the 11 situated structures — i.e. one description of the noetic, more subjective, side — is shown, followed by the synthesised meaning of all 11 situated structures together, i.e. the noematic side. The analysis of patient empowerment in an intensive care situation is then described in five typological structures or themes.
One situated structure Irene (assumed name) only has diffuse memories from her first days in the ICU. She was more or less absent. Days and nights flowed into each other. She had many dreams and strange experiences during these first days. She felt, e.g., that her body was divided into pieces that were checked while she stood alongside. She also experienced a young girl sitting beside her bed as a guard. She felt that this girl watched her so that she would not give up. This made her feel safe and calm. Irene found it very trying to be so seriously ill and to receive treatment in the ICU. When she was not able to do anything for herself and had to constantly ask for help she felt helpless, depressed and exposed. The staff seldom spontaneously noticed her needs, but when she asked for help she immediately received what she wanted. She felt more confidence in some of the staff than in others, and it was valuable for her to receive tenderness and to feel that she was significant. Some staff acted however in a rejective manner. They made her feel that she was bothering them when she asked for help or showed that they did not appreciate visitors. Once, when a nurse told her that some tests were irregular, Irene felt depressed and felt close to giving up. She would have appreciated a better explanation of what kind of test it was and what the answer meant. She would surely have gotten this answer if she had asked for it, but she did not have the energy to ask. Now and then Irene was asked how she wanted her pillows, or if she wished to be given some water. On other occasions she could not make any choices herself because she did not have the energy to bother and, therefore, seldom asked for help if she did not absolutely have to. Irene only noticed what the staff was doing, but did not wonder much about why they were behaving as they were.
374 She appreciated it when the atmosphere within the caregiving team was positive and when people showed humour. At these times, she and her husband felt that they also were part of the team and not only patient and next of kin. Irene feels that family members are important for recovery. They gave her the will to fight to return to ordinary life. When she was close to giving up, her husband supported her and said that it was a temporary deterioration and that she would become healthy again. If she had not received this support, she believes that she would have easily descended into depression. She felt much safer when someone from her family was with her and held her hand, someone close who cared about her. Even if the staff cared, it was not the same; it was more part of their job. Irene thinks that it is thanks to maintaining her strength and inner joy of life that she got through the ICU period as well as she did.
Synthesised meaning—–typological structures Patient empowerment was reflected in the typological structures of strengthening and stimulating the patients own inherent joy of life and will to fight, creating a safe environment, encouraging feelings of value and motivation, providing additional care and encouraging patient participation. According to the patient’s condition, different themes of empowerment were salient. In general terms, the ICU stay could be divided into two periods. The first period in ICU was often characterized by a drowsylike condition during which days and nights flowed together. Ability to communicate was strongly limited, and the patient felt defenceless and dependent on the staff. The patient registered some information but did not ask, and seldom doubted, anything. Creating a safe environment, generated by closeness, good care and information, was found to be most important during this period. When the patient’s condition improved slightly, he/she often became sensitive to staff moods. Sometimes an all-encompassing fight took place within the patient between giving up and dying or struggling to return to life. Strengthening and stimulation of the patient’s own inherent joy of life and motivation were said to be of crucial importance for continued recovery. Someone (next of kin or someone on the staff) who made the patient feel that he/she was valuable, additional care and encouraging patient participation in accordance with the patient’s wishes, were also found to be important during this period. The following presentation of identified themes are based upon all interviews together and the number after patient quotes only
I. W˚ ahlin et al. shows which interview the actual quote was taken from.
Creating a safe environment Having a human being, i.e. next of kin or staff, close by made the patient feel safe, someone who could feel what the patient needed just at that moment, be it a hand to hold, someone to talk with or any other kind of help. It was often easier for next of kin, or professionals who the patient had met with several times, to interpret signals than for someone new and unknown. Belief in a supreme being or an experience of supervision from the spirit world could also infuse safety. ‘‘At the same time it feels safe when you’re lying there, to have someone from the family with you. As I said before, I didn’t have the energy to talk, but he understood that. He just sat down and held my hand.’’ (Respondent nr 9) When members of the staff were stressed or unsure, the patient also became stressed and unsure, while calm and safe staff infused security. For a patient with a chronic disease, meeting with his/her ordinary doctor could constitute safety. Information contributed to safety if it provided answers to questions or wonderings, facilitated comprehension of symptoms, treatment or coherence, or prepared for coming changes. ‘‘. . .yes, it is the personal contact. It is important. You get good information, what’s going on and what you should account for, how long you are going to stay, who makes the decisions and so on. And what they are going to do tomorrow and that we are taking you to x-ray and things like that, and that’s always good . . . to get information . . . as I see it, but that forms a part of professional staff.’’ (Respondent nr 7) If information was incomplete, unintelligible or lacked positive elements, it could cause anxiety and despair. As the ICU patient very often could not, or did not have the energy to, ask questions, it was important that the information was well balanced and followed up and, if necessary, completed or clarified.
Encouraging feelings of value and motivation For the ICU patient it was important to receive confirmation that he/she was important as a person, had value and was not just a patient. This was how the patient felt when being acknowledged and
Patient empowerment in intensive care
375
when staff demonstrated appreciation of conversation or happiness over progress.
like changing position and such things. It’s a lot of things like that. . .’’ (Respondent nr 6)
‘‘. . . they were more like you weren’t only a patient but . . . you felt that you were something more. Something closer or what I should say.’’ (Respondent nr 9)
However, the patient could not influence the room furnishings or decide whether they should be in a single room or together with other patients. This could be experienced as distressing, i.e. too lonesome, noisy or inhospitable.
The patient also felt valuable when being reminded of how much he/she meant to those at home - their family, grandchildren and friends. Being reminded about things that were important in ordinary life strengthened the patient’s motivation to fight. This could be thinking about their home, friends, family, workmates or someone else or something that would be waiting when they recovered. ‘‘And then, yes all the letters from all the good friends, and postcards, and encouragements to get better, we have so many things to do together and so on. That has an influence.’’ (Respondent nr 3)
Providing additional care It was very important for the patient to feel that someone cared for him/her. The patient appreciated when he/she received additional care, i.e. lubrication of dry skin, help with washing their hair when it was dirty, or help with cutting their nails when they were too long. A hug or a pat on the cheek was experienced as human warmth and consideration. ‘‘Just that, you know, that you felt that your hair itched and you lay there and then it was so pleasant when she washed my hair. And another you know, she gave my hands some lubrication because she thought they were chapped and like that, and then, yes another cut my nails, and somewhat personal like that and a bit more engaged about how I felt and how I . . . and I experienced this very positively, I really did.’’ (Respondent nr 11)
Encouraging patient participation It was important to be taken seriously and be listened to, even if the patient wished and found it natural to leave medical decisions and treatment principals to the professionals. The patients did not like to feel responsible for control over medications or care instructions. Everyday things, such as position in bed and personal hygiene, were on the other hand valuable issues for the patient to have some influence over. ‘‘. . .you know when you are that sick, doctors have to make the decisions, but it is more things like . . .
Strengthening and stimulating the patients own inherent joy of life and will to fight All respondents related their experiences of strength and power in intensive care situations to their ability to maintain their own inherent joy of life and will to fight. This was said to be of essential importance for their recovery. Even if joy of life and will to fight was something inherent in their personality, it could be strengthened or decreased. A positive environment was found to be very valuable. The patient was influenced by the atmosphere and the cooperation within the care giving team and an atmosphere with space for humour strengthened the relation between patient, next of kin and staff. Making a joke and talking about everyday things and not only about disease and treatment brightened up the patient’s thoughts. ‘‘. . .it is inherent in oneself, to go on, and . . . but if you get some help on your way it’s easier of course, it’s easier to get your will to live and joy of life back again. If the environment is positive and so on, it is easier too . . . to take an active interest in that way. And I think it was like that there.’’ (Respondent nr 11) Conversely, if the patient felt depressed, that impact negatively on their will to fight.
Discussion The aim of this study was to describe patient empowerment in an intensive care situation. All participating patients regarded their own inherent joy of life and will to fight as their greatest strength. This was maintained and the patients were empowered through a positive environment in which they received good care and felt safe. Professional information and cooperation to some degree, in accordance with a patient’s wishes, as well as someone (next of kin or someone of the staff) who made the patient feel valuable and motivated him/her to fight also strengthened the patient. Patient empowerment is usually discussed from the point of view of participation in healthcare
376 decisions. This study, however, emanated from a broader perspective, from which even experiences of increased strength and power were reflected. This is in line with empowerment sometimes being referred to as enhancing power or total energy (Kuokkanen and Leino-Kilpi, 2000; Rodwell, 1996), and power possibly being seen as authority, capacity or energy (Thomas and Welthouse, 2003). Even if context and perspective differ, the present results share several similarities with others. For instance, Bulsara (2004) identified coping strategies used by cancer patients and found three main ways in which empowerment occurred: Firstly, the need to have power within oneself in terms of fighting spirit; secondly, a reliance on significant others either within and/or outside the medical profession, and; thirdly, acceptance of the illness. In the study by Bulsara (2004), significant others provided mostly emotional support while the role of healthcare providers was to give positive reinforcement and information, ensuring that the patient and family had a full understanding. In the present study, the staff mainly empowered the patient through good physical care, a positive environment, information and participation, while the next of kin had the greatest importance in empowering the patient through making him/her feel safe, valuable and motivated to fight. For the patients who did not receive support from relatives, the staff became more important. The connection between feelings of value, motivation and empowerment harmonize with Rodwell’s (1996) analysis of the concept of empowerment. She found that empowerment resulted in positive self-esteem, ability to set and reach goals, a sense of control over life and change processes, and a sense of hope for the future. Fleury (1991) additionally identified motivational action as important in the empowering process of cardiovascular patients. Regarding decision-making and sense of control, intensive care patients are inevitably in need of professionals with knowledge of how to treat their diseases. To empower the patient, however, it is important that staff allow patients to participate to the degree patients desire. As Kieffer (1984) stated, it is feeling and subjective experience that are important for empowerment, not the objective fact. A limitation of this study was that only patients who survived and were able to take part in an interview after their ICU period could participate, and that patients from only two hospitals were included. A phenomenological approach was regarded as the most appropriate strategy to gain knowledge about the patients lived experiences of the phenomenon. In accordance with this method,
I. W˚ ahlin et al. efforts were made to remain as open and without prior assumption as possible through the whole research process. To strengthen trustworthiness, checks were continuously performed, so that the meaning expressed would not be changed during the process of analysis and that the interpretation would fit well with the meaning discovered in the rest of the protocols (cf. Karlsson, 1995).
Conclusion and implications The results showed that patient empowerment in intensive care consists of strengthening and stimulating the patients’ own inherent joy of life and will to fight. A positive environment that encouraged feelings of value and motivation and in which the patient felt safe, received additional care and participation as he/she wished, had a positive influence. An awareness about how essential it is to maintain inherent joy of life and will to fight, emphasizes the need for personal care based on close communication with the patient and his/her next of kin. Time has to be invested in communicating with the patient and family in order to find out what is important for this patient in their daily life. What positive thing could he/she look forward to when coming home? It also underlines the importance of a positive environment where next of kin are seen as an invaluable resource. Through understanding the situation—–what has happened, what is planned and what is expected to happen, the ICU patient was able to experience some form of control over their own life, assuming they felt certain that the professionals did all they could to help. This underlines the need of continuous, well-balanced, professional information. The study showed that ICU patients were empowered when they were confirmed as valuable. In this matter, next of kin were found to play an important role. Being close to a seriously ill patient is, however, very distressing and more knowledge is needed regarding how next of kin in intensive care can be empowered. The results, conducted using a phenomenological approach in a small group, are not necessarily transferable to other groups. They can be used for reflection to enlarge our awareness about what intensive care patients may experience.
Acknowledgements We wish to thank the Health Research Council in the Southeast of Sweden and the County Council in
Patient empowerment in intensive care Kalmar for valuable financial support for this study, and the ICU nurses for helping us to contact the informants.
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ORIGINAL ARTICLE
Patient empowerment in intensive care—–An interview study Ingrid W˚ ahlin a,b,∗, Anna-Christina Ek b, Ewa Idvall b,c a
Department of Planning and Development, Administration Office, Kalmar Hospital, Sweden Department of Medicine and Care, Division of Nursing Science, Faculty of Health Sciences, Link¨ oping University, Sweden c Research Section, Kalmar County Council, Sweden b
Accepted 5 May 2006
KEYWORDS Critical care; Empowerment; Experiences
Summary Intensive care patients often experience a lack of control, as well as inner chaos. Experiences from intensive care can continue to affect patients for a long time. Empowerment is a positive and dynamic process that focuses on people’s strengths, rights and abilities. It takes on different expressions for different people in different environments and must be described by the people involved. The aim of this study was to describe patient empowerment in an intensive care situation. The study was based on open-ended interviews with 11 patients in two intensive care units. The interviews were analysed according to the empirical phenomenological psychological method. The results showed that patient empowerment in intensive care consists of strengthening and stimulating the patients’ own inherent joy of life and will to fight. A positive environment that encouraged feelings of value and motivation and in which the patient felt safe, received additional care and participated as he/she wished had a positive influence. © 2006 Elsevier Ltd. All rights reserved.
Introduction It is known that critically ill patients often experience a lack of control, as well as inner chaos (Cornock, 1998; Granberg et al., 1998). Several studies show that intensive care patients are very sensitive to the attitudes and behaviours of staff, who may either increase patients’ anxiety and ∗ Corresponding author at: Orkesterv¨ agen 12, 382 34 Nybro, Sweden. Tel.: +46 480 448851; fax: +46 480 448877. E-mail address: [email protected] (I. W˚ ahlin).
vulnerability or make them feel more safe and confident (Holland et al., 1997; Laitinen, 1996; Mc Kinley et al., 2002). Patients’ experiences of powerlessness, lack of knowledge/information, vulnerability, defencelessness, anxiety and distress (Hafsteind´ ottir, 1996; Mc Kinley et al., 2002; Russell, 1999) may contribute to developing acute confusion, often called intensive care confusion or delirium (Geary, 1994). This condition generates increased psychological suffering (Dyer, 1995), but can also affect the duration of hospitalisation as well as mortality (Geary, 1994). Experiences from
0964-3397/$ — see front matter © 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.iccn.2006.05.003
Patient empowerment in intensive care intensive care may affect patients several months after leaving the hospital (Russell, 1999). Empowerment has recently been described in relation to self-care in chronic illness such as diabetes (Adolfsson et al., 2004; Fullnell et al., 2005) and cancer (Chang et al., 2004). There is no unambiguous way of describing empowerment, since expressions differ from person to person and within organisations (Wallerstein and Bernstein, 1988). In social theory, empowerment refers to social and political phenomena concerning unprivileged groups (e.g. ethnic groups, homosexuals, immigrants, women, and patients) and their ability to control their own lives (Ward and Mullender, 1991). Organisational and management theories focus on organisation structure, and power is associated with standing and ability to get things done. In this environment, empowerment is described as a process in which power is distributed within the organisational hierarchy from the top down, with increased production and effectiveness as a result (Kanter, 1979). In social psychological theory, empowerment is seen as a process of personal growth and development. Power is generated in relationships with other people through individuals’ behaviour and actions. The ability to acquire information is an important prerequisite of empowerment (Kuokkanen and Leino-Kilpi, 2000). Rappaport (1984) regards empowerment as easy to define in its absence: powerlessness, helplessness, alienation, loss of sense of control. It is more difficult to define positively because it takes different forms in different people and contexts, and thus must be described by the person involved. Empowerment is seen as a dynamic process in which power is shared, i.e. both yielded and received (Hegar and Hunzeker, 1988). Empowerment is a concept that is fundamentally positive, referring to solutions, rights and possibilities rather than to problems and requirements. An empowered person does not pretend to have more power but instead feels more powerful (Kieffer, 1984). Empowerment can be seen as both a process and a result (Gibson, 1991), and is independent of a specific time or place (Reynolds, 1971). In a general sense, empowerment is viewed as a process through which people, organisations, and communities gain mastery over their own lives (Rappaport, 1984). Empowerment focuses on people’s strengths, rights and abilities, as opposed to paternalism, which means that others take the liberty of decision (Gray, 1999). As described before, intensive care patients often experience feelings such as powerlessness, a lack of knowledge/information, vulnerability, anxiety and distress. For this reason it is important to acquire more knowledge
371 about the actions and attitudes that can strengthen their experience of empowerment. Hopefully, this can facilitate the patients’ wellbeing and recovery. A social psychological viewpoint (Kuokkanen and Leino-Kilpi, 2000) and a philosophically grounded idea of equality, that everyone is of equal value and should have the opportunity to decide on one’s own, and thus participate and exert influence (Renblad, 2003), is close to nursing, which is the perspective in this study. The aim of the study was to describe patient empowerment in an intensive care situation. The questions posed concerned the intensive care patients’ experiences of involvement and participation in decision-making as well as their experiences of increased strength and power.
Method When an exploration of meanings of social phenomena as experienced by individuals themselves is undertaken, qualitative research methods are appropriate (Malterud, 2001). These methods attempt to deal with the issue of human complexity by exploring it directly. The inherent human complexity is emphasized, the truth is seen as a composite of realities, and investigations place a heavy emphasis on understanding the human experience as it is lived (Polit and Hungler, 1999). A phenomenological approach was used in the study. Eleven individuals who had spent three or more days in an intensive care unit (ICU) participated in the study. The selection of subjects was performed in collaboration with intensive care nurses, working at general ICUs in two hospitals, which included one county hospital (small sized hospital) and one central county hospital (medium sized hospital) in southern Sweden. A purposeful sampling was used, seeking information from participants with different diagnoses, ages, days in ICU and gender, so that the range of experiences and breadth of the phenomenon could be understood (Coyne, 1997). Patients were excluded if they were younger than 18 years of age or did not speak Swedish. Selected patients received written and verbal information on the study and an application to participate. The interviews were conducted during 2004—2005 by the first author in a quiet room in the hospital, in the participant’s home or in another place according to the participant’s wish, between 4 and 30 days after the patient had left the ICU. The time lapse between discharge and interview depended on the participant’s condition, preferences and practical reasons.
372 Table 1
I. W˚ ahlin et al. Step three illustrated (assumed name)
Meaning unit
Transformed unit
1. R: Yes, I do think that I felt more comfortable with some than with others. It . . . but it may have something to do with personal chemistry. You have more confidence and feel more for one than another, but it is, as I said, I think most of them were very good 2. I: Those you felt extra good with, what do you think they do or have? R: Yes, you felt that they cared perhaps a little bit more, they were more like you were not just a patient, but something more. A bit closer or what I should say, not only yes, yes, but of course we will help you and, yes it is difficult to explain, but I experience them as more good, like it was no problem for them, I guess
1. Irene felt more confidence with some of the staff than with others. She thought that this may have something to do with personal chemistry
3. There were some who you felt that you more or less troubled, just because you were in pain, and perhaps wanted an injection. And that . . . but it was only a few. No names. But most of them were quick to say of course we will help you, and you felt that they cared, I guess 4. I: How did they show that they cared? R: Well, it is only something you feel, really, it is just their way of being. Perhaps only that they gave you a pat, or touched your hair or, yes showed some tenderness I guess, or something like we’ll take care of that, and like that. You feel that you mean something, something more I guess. You noticed that they were just as nice to others too, and that it was their manner to be that way, and that, that felt comfortable. It felt a bit more like of course we will do that
3. Irene felt that she bothered a few of the staff when she asked for analgesic
5. Yes, as I say, everyone is so busy and has so much to do, but to give someone a small pat does not take that much time but means so much. For the person who is lying there, it means very much to feel that someone sympathizes with you. And then wants to help you. Yes like that
5. Irene thinks that giving someone a small pat does not take much time, but it means a great deal to feel that someone cares and wants to help
2. Irene felt that some of the staff cared more and came closer, and she never felt that she was bothering them
4. Some of the staff showed that they really cared about her by, e.g., showing tenderness. This made Irene feel that she was more than just a patient
I: interviewer, R: respondent, figures express different meaning units.
The interviews were initiated by an open question, by which the patients were asked to tell about their experiences from the ICU regarding events, thoughts and feelings. Areas covered were experiences of involvement and participation in decision-making, as well as experiences of increased strength and power. Follow-up questions like ‘‘what did you feel’’, ‘‘what did you think’’ and ‘‘can you tell me more about. . .’’ were used. The interviews, which lasted between 30 and 80 min, were audio taped and transcribed verbatim. Since the aim of the study was to describe empowerment as it was lived and experienced by the ICU patients, a phenomenological approach according to the empirical phenomenological psychological (EPP) method was chosen. The method is grounded in Husserl’s phenomenological philosophy and was developed by Karlsson (1995).
In accordance with Karlsson (1995), the analysis of the transcribed interviews was conducted in five steps. First, the transcripts were read until ‘‘a good grasp’’ of the whole was obtained. The text was then discriminated into smaller units, called meaning units (MUs). The MU did not follow linguistic grammatical rules, but instead divided the text where the researcher discerned a shift in meaning. Each MU was transformed into the researcher’s language (nursing), i.e. the spoken, everyday language of the respondent was translated into the written language of the researcher and was transformed into a new text that better summed up the meaning of that particular MU. A piece of text divided into MUs and transformed units are shown in Table 1. The transformed MUs were synthesised into ‘‘situated structure’’, one for each interview. The situated structure represented a noetic (subjective) descrip-
Patient empowerment in intensive care Table 2
373
Informants’ characteristics
Respondent
Days in ICU
Age
Days with respirator
Perceived diseases
1 2 3 4 5 6 7 8 9 10 11
6 5 41 3 5 10 9 8 4 4 35
59 74 75 28 68 74 61 83 51 48 60
— — 30 1/2 — 3 — — — 2 days with track 21
Lung cancer Intestinal bleeding Respiratory disease Multiple trauma Respiratory disease Neuromuscular disorder Aorta perforation Sepsis Appendicitis with perforation Respiratory obstruction Pneumonia
tion of how patient empowerment in an intensive care situation was lived. All 11 situated structures were then synthesised into a general meaning structure, demonstrating the noematic (objective) side of the phenomenon. Though a condensation to only one structure was found to be too abstract, different types of meaning structures reflecting individual variation (typological structure or themes) were also analysed (Karlsson, 1995).
Ethical considerations All patients received verbal and written information on the study, and gave their informed consent to participate. They were able to choose the time and place of interview and hade also the opportunity to stop the interview if they became exhausted or distressed. The interviewer was not involved in the care of the patients, but was an experienced ICU nurse. The participants were informed that all information were handled confidentially and that no specific individual would be recognizable in the final result.
Results The respondents represented a heterogeneous group and consisted of six men and five women. Their ages ranged from 28 to 83 years and their ICU length of stay was between 4 and 35 days. Five of the 11 participants had been treated with a respirator. Information about the participants is shown in Table 2. In the results, one of the 11 situated structures — i.e. one description of the noetic, more subjective, side — is shown, followed by the synthesised meaning of all 11 situated structures together, i.e. the noematic side. The analysis of patient empowerment in an intensive care situation is then described in five typological structures or themes.
One situated structure Irene (assumed name) only has diffuse memories from her first days in the ICU. She was more or less absent. Days and nights flowed into each other. She had many dreams and strange experiences during these first days. She felt, e.g., that her body was divided into pieces that were checked while she stood alongside. She also experienced a young girl sitting beside her bed as a guard. She felt that this girl watched her so that she would not give up. This made her feel safe and calm. Irene found it very trying to be so seriously ill and to receive treatment in the ICU. When she was not able to do anything for herself and had to constantly ask for help she felt helpless, depressed and exposed. The staff seldom spontaneously noticed her needs, but when she asked for help she immediately received what she wanted. She felt more confidence in some of the staff than in others, and it was valuable for her to receive tenderness and to feel that she was significant. Some staff acted however in a rejective manner. They made her feel that she was bothering them when she asked for help or showed that they did not appreciate visitors. Once, when a nurse told her that some tests were irregular, Irene felt depressed and felt close to giving up. She would have appreciated a better explanation of what kind of test it was and what the answer meant. She would surely have gotten this answer if she had asked for it, but she did not have the energy to ask. Now and then Irene was asked how she wanted her pillows, or if she wished to be given some water. On other occasions she could not make any choices herself because she did not have the energy to bother and, therefore, seldom asked for help if she did not absolutely have to. Irene only noticed what the staff was doing, but did not wonder much about why they were behaving as they were.
374 She appreciated it when the atmosphere within the caregiving team was positive and when people showed humour. At these times, she and her husband felt that they also were part of the team and not only patient and next of kin. Irene feels that family members are important for recovery. They gave her the will to fight to return to ordinary life. When she was close to giving up, her husband supported her and said that it was a temporary deterioration and that she would become healthy again. If she had not received this support, she believes that she would have easily descended into depression. She felt much safer when someone from her family was with her and held her hand, someone close who cared about her. Even if the staff cared, it was not the same; it was more part of their job. Irene thinks that it is thanks to maintaining her strength and inner joy of life that she got through the ICU period as well as she did.
Synthesised meaning—–typological structures Patient empowerment was reflected in the typological structures of strengthening and stimulating the patients own inherent joy of life and will to fight, creating a safe environment, encouraging feelings of value and motivation, providing additional care and encouraging patient participation. According to the patient’s condition, different themes of empowerment were salient. In general terms, the ICU stay could be divided into two periods. The first period in ICU was often characterized by a drowsylike condition during which days and nights flowed together. Ability to communicate was strongly limited, and the patient felt defenceless and dependent on the staff. The patient registered some information but did not ask, and seldom doubted, anything. Creating a safe environment, generated by closeness, good care and information, was found to be most important during this period. When the patient’s condition improved slightly, he/she often became sensitive to staff moods. Sometimes an all-encompassing fight took place within the patient between giving up and dying or struggling to return to life. Strengthening and stimulation of the patient’s own inherent joy of life and motivation were said to be of crucial importance for continued recovery. Someone (next of kin or someone on the staff) who made the patient feel that he/she was valuable, additional care and encouraging patient participation in accordance with the patient’s wishes, were also found to be important during this period. The following presentation of identified themes are based upon all interviews together and the number after patient quotes only
I. W˚ ahlin et al. shows which interview the actual quote was taken from.
Creating a safe environment Having a human being, i.e. next of kin or staff, close by made the patient feel safe, someone who could feel what the patient needed just at that moment, be it a hand to hold, someone to talk with or any other kind of help. It was often easier for next of kin, or professionals who the patient had met with several times, to interpret signals than for someone new and unknown. Belief in a supreme being or an experience of supervision from the spirit world could also infuse safety. ‘‘At the same time it feels safe when you’re lying there, to have someone from the family with you. As I said before, I didn’t have the energy to talk, but he understood that. He just sat down and held my hand.’’ (Respondent nr 9) When members of the staff were stressed or unsure, the patient also became stressed and unsure, while calm and safe staff infused security. For a patient with a chronic disease, meeting with his/her ordinary doctor could constitute safety. Information contributed to safety if it provided answers to questions or wonderings, facilitated comprehension of symptoms, treatment or coherence, or prepared for coming changes. ‘‘. . .yes, it is the personal contact. It is important. You get good information, what’s going on and what you should account for, how long you are going to stay, who makes the decisions and so on. And what they are going to do tomorrow and that we are taking you to x-ray and things like that, and that’s always good . . . to get information . . . as I see it, but that forms a part of professional staff.’’ (Respondent nr 7) If information was incomplete, unintelligible or lacked positive elements, it could cause anxiety and despair. As the ICU patient very often could not, or did not have the energy to, ask questions, it was important that the information was well balanced and followed up and, if necessary, completed or clarified.
Encouraging feelings of value and motivation For the ICU patient it was important to receive confirmation that he/she was important as a person, had value and was not just a patient. This was how the patient felt when being acknowledged and
Patient empowerment in intensive care
375
when staff demonstrated appreciation of conversation or happiness over progress.
like changing position and such things. It’s a lot of things like that. . .’’ (Respondent nr 6)
‘‘. . . they were more like you weren’t only a patient but . . . you felt that you were something more. Something closer or what I should say.’’ (Respondent nr 9)
However, the patient could not influence the room furnishings or decide whether they should be in a single room or together with other patients. This could be experienced as distressing, i.e. too lonesome, noisy or inhospitable.
The patient also felt valuable when being reminded of how much he/she meant to those at home - their family, grandchildren and friends. Being reminded about things that were important in ordinary life strengthened the patient’s motivation to fight. This could be thinking about their home, friends, family, workmates or someone else or something that would be waiting when they recovered. ‘‘And then, yes all the letters from all the good friends, and postcards, and encouragements to get better, we have so many things to do together and so on. That has an influence.’’ (Respondent nr 3)
Providing additional care It was very important for the patient to feel that someone cared for him/her. The patient appreciated when he/she received additional care, i.e. lubrication of dry skin, help with washing their hair when it was dirty, or help with cutting their nails when they were too long. A hug or a pat on the cheek was experienced as human warmth and consideration. ‘‘Just that, you know, that you felt that your hair itched and you lay there and then it was so pleasant when she washed my hair. And another you know, she gave my hands some lubrication because she thought they were chapped and like that, and then, yes another cut my nails, and somewhat personal like that and a bit more engaged about how I felt and how I . . . and I experienced this very positively, I really did.’’ (Respondent nr 11)
Encouraging patient participation It was important to be taken seriously and be listened to, even if the patient wished and found it natural to leave medical decisions and treatment principals to the professionals. The patients did not like to feel responsible for control over medications or care instructions. Everyday things, such as position in bed and personal hygiene, were on the other hand valuable issues for the patient to have some influence over. ‘‘. . .you know when you are that sick, doctors have to make the decisions, but it is more things like . . .
Strengthening and stimulating the patients own inherent joy of life and will to fight All respondents related their experiences of strength and power in intensive care situations to their ability to maintain their own inherent joy of life and will to fight. This was said to be of essential importance for their recovery. Even if joy of life and will to fight was something inherent in their personality, it could be strengthened or decreased. A positive environment was found to be very valuable. The patient was influenced by the atmosphere and the cooperation within the care giving team and an atmosphere with space for humour strengthened the relation between patient, next of kin and staff. Making a joke and talking about everyday things and not only about disease and treatment brightened up the patient’s thoughts. ‘‘. . .it is inherent in oneself, to go on, and . . . but if you get some help on your way it’s easier of course, it’s easier to get your will to live and joy of life back again. If the environment is positive and so on, it is easier too . . . to take an active interest in that way. And I think it was like that there.’’ (Respondent nr 11) Conversely, if the patient felt depressed, that impact negatively on their will to fight.
Discussion The aim of this study was to describe patient empowerment in an intensive care situation. All participating patients regarded their own inherent joy of life and will to fight as their greatest strength. This was maintained and the patients were empowered through a positive environment in which they received good care and felt safe. Professional information and cooperation to some degree, in accordance with a patient’s wishes, as well as someone (next of kin or someone of the staff) who made the patient feel valuable and motivated him/her to fight also strengthened the patient. Patient empowerment is usually discussed from the point of view of participation in healthcare
376 decisions. This study, however, emanated from a broader perspective, from which even experiences of increased strength and power were reflected. This is in line with empowerment sometimes being referred to as enhancing power or total energy (Kuokkanen and Leino-Kilpi, 2000; Rodwell, 1996), and power possibly being seen as authority, capacity or energy (Thomas and Welthouse, 2003). Even if context and perspective differ, the present results share several similarities with others. For instance, Bulsara (2004) identified coping strategies used by cancer patients and found three main ways in which empowerment occurred: Firstly, the need to have power within oneself in terms of fighting spirit; secondly, a reliance on significant others either within and/or outside the medical profession, and; thirdly, acceptance of the illness. In the study by Bulsara (2004), significant others provided mostly emotional support while the role of healthcare providers was to give positive reinforcement and information, ensuring that the patient and family had a full understanding. In the present study, the staff mainly empowered the patient through good physical care, a positive environment, information and participation, while the next of kin had the greatest importance in empowering the patient through making him/her feel safe, valuable and motivated to fight. For the patients who did not receive support from relatives, the staff became more important. The connection between feelings of value, motivation and empowerment harmonize with Rodwell’s (1996) analysis of the concept of empowerment. She found that empowerment resulted in positive self-esteem, ability to set and reach goals, a sense of control over life and change processes, and a sense of hope for the future. Fleury (1991) additionally identified motivational action as important in the empowering process of cardiovascular patients. Regarding decision-making and sense of control, intensive care patients are inevitably in need of professionals with knowledge of how to treat their diseases. To empower the patient, however, it is important that staff allow patients to participate to the degree patients desire. As Kieffer (1984) stated, it is feeling and subjective experience that are important for empowerment, not the objective fact. A limitation of this study was that only patients who survived and were able to take part in an interview after their ICU period could participate, and that patients from only two hospitals were included. A phenomenological approach was regarded as the most appropriate strategy to gain knowledge about the patients lived experiences of the phenomenon. In accordance with this method,
I. W˚ ahlin et al. efforts were made to remain as open and without prior assumption as possible through the whole research process. To strengthen trustworthiness, checks were continuously performed, so that the meaning expressed would not be changed during the process of analysis and that the interpretation would fit well with the meaning discovered in the rest of the protocols (cf. Karlsson, 1995).
Conclusion and implications The results showed that patient empowerment in intensive care consists of strengthening and stimulating the patients’ own inherent joy of life and will to fight. A positive environment that encouraged feelings of value and motivation and in which the patient felt safe, received additional care and participation as he/she wished, had a positive influence. An awareness about how essential it is to maintain inherent joy of life and will to fight, emphasizes the need for personal care based on close communication with the patient and his/her next of kin. Time has to be invested in communicating with the patient and family in order to find out what is important for this patient in their daily life. What positive thing could he/she look forward to when coming home? It also underlines the importance of a positive environment where next of kin are seen as an invaluable resource. Through understanding the situation—–what has happened, what is planned and what is expected to happen, the ICU patient was able to experience some form of control over their own life, assuming they felt certain that the professionals did all they could to help. This underlines the need of continuous, well-balanced, professional information. The study showed that ICU patients were empowered when they were confirmed as valuable. In this matter, next of kin were found to play an important role. Being close to a seriously ill patient is, however, very distressing and more knowledge is needed regarding how next of kin in intensive care can be empowered. The results, conducted using a phenomenological approach in a small group, are not necessarily transferable to other groups. They can be used for reflection to enlarge our awareness about what intensive care patients may experience.
Acknowledgements We wish to thank the Health Research Council in the Southeast of Sweden and the County Council in
Patient empowerment in intensive care Kalmar for valuable financial support for this study, and the ICU nurses for helping us to contact the informants.
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