International Journal of Nursing Studies

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1 International Journal of Nursing Studies 52 (2015) Contents lists available at ScienceDirect International Journal of Nursing Studies journal homepage: The patient experience of intensive care: A meta-synthesis of Nordic studies Ingrid Egerod a, *, Ingegerd Bergbom b, Berit Lindahl c,b, Maria Henricson d, Anetth Granberg-Axell e, Sissel Lisa Storli f a University of Copenhagen, Rigshospitalet, Trauma Center, Blegdamsvej 9, DK-2100 Copenhagen O, Denmark b Institute of Health and Caring Sciences, The Sahlgrenska Academy, University of Gothenburg, SE Gothenburg, Sweden c School of Health Sciences, Bora s University College, Sweden d School of Health Sciences, University of Jönköping, Sweden e Clinical Lecturer, Lasarettsvägen, entré 13, Halmstad, Sweden f Department of Health and Care Sciences, Faculty of Health Sciences, University of Tromsø The Artic University of Norway, 9037 Tromsø, Norway A R T I C L E I N F O Article history: Received 6 November 2014 Received in revised form 1 April 2015 Accepted 28 April 2015 Keywords: Hermeneutics Intensive care Liminality Meta-synthesis Nursing Patient experience A B S T R A C T Background: Sedation practices in the intensive care unit have evolved from deep sedation and paralysis toward lighter sedation and better pain management. The new paradigm of sedation has enabled early mobilization and optimized mechanical ventilator weaning. Intensive care units in the Nordic countries have been particularly close to goals of lighter or no sedation and a more humane approach to intensive care. Objectives: The aim of our study was to systematically review and reinterpret newer Nordic studies of the patient experience of intensive care to obtain a contemporary description of human suffering during life-threatening illness. Design: We conducted a meta-synthesis in which we collected, assessed, and analyzed published qualitative studies with the goal of synthesizing these findings into a new whole. Analysis was based on the scientific approach of Gadamerian hermeneutics. Settings: Nordic intensive care units. Participants: Patients in Nordic intensive care units. Methods: We performed a literature search of qualitative studies of the patient experience of intensive care based on Nordic publications in We searched the following databases: PubMed, CINAHL, Scopus, and PsycINFO. Each original paper was assessed by all authors using the Critical Appraisal Skills Program instrument for qualitative research. We included 22 studies, all of which provided direct patient quotes. Results: The overarching theme was identified as: The patient experience when existence itself is at stake. We constructed an organizing framework for analysis using the main perspectives represented in the included studies: body, mind, relationships, and ICUenvironment. Final analysis and interpretation resulted in the unfolding of four themes: existing in liminality, existing in unboundedness, existing in mystery, and existing on the threshold. Conclusions: Our main finding was that human suffering during intensive care is still evident although sedation is lighter and the environment is more humane. Our * Corresponding author. Tel.: ; fax: addresses: Ingrid.Egerod@regionh.dk (I. Egerod), Ingegerd.Bergbom@fhs.gu.se (I. Bergbom), Berit.Lindahl@hb.se (B. Lindahl), Maria.Henricson@hhj.hj.se (M. Henricson), Anetth.Granberg-Axell@regionhalland.se (A. Granberg-Axell), sissel.l.storli@uit.no (S.L. Storli) /ß 2015 Elsevier Ltd. All rights reserved.

2 I. Egerod et al. / International Journal of Nursing Studies 52 (2015) interpretation suggested that patients with life-threatening illness descend into a liminal state, where they face the choice of life or death. Caring nurses and family members play an important role in assisting the patient to transition back to life. ß 2015 Elsevier Ltd. All rights reserved. What is already known about the topic? The patient experience in intensive care is affected by life-threatening illness and invasive procedures. The context of intensive care is changing and sedation practices have evolved from deep to light, or no sedation. Nordic nursing programs are influenced by continental philosophies of caring that encourage a genuine understanding of each unique human being. What this paper adds Human suffering is still evident in contemporary studies of Nordic intensive care units Life-threatening illness and invasive procedures induce patients to drift between authentic and fictitious worlds. Patients descend into a liminal state facing the choice of life or death. Caring others play an important role in co-transcending with the patient back to life. 1. Introduction Over the years, qualitative studies have explored the patient experience of intensive care, sedation, and mechanical ventilation. In the new millennium, sedation practices in the intensive care unit (ICU) have evolved from deep sedation and paralysis toward lighter sedation and better pain management (Strøm and Toft, 2014). A new paradigm of sedation has been described, enabling early mobilization and optimizing mechanical ventilator weaning (Roberts et al., 2012). Nordic countries have been particularly close to goals of lighter or no sedation (Egerod et al., 2013; Strøm et al., 2010). In this paper senior researchers from the Nordic Association for Intensive Care Nursing Research, NOFI (Egerod, 2011) joined forces to present a meta-synthesis of studies published on the patient experience of intensive care based on Nordic studies published in Background Patients facing life-threatening illness in the ICU require life-sustaining interventions and technological support for survival, entailing continuous monitoring, dynamic interventions, and health promoting activities. While mechanical ventilation, sedation, and pain management are fundamental to the care of the critically ill patient (Egerod, 2009; Samuelson et al., 2006), a growing body of research is aimed at understanding the patient experience and improving the quality of care in the ICU (Rose et al., 2014). Two meta-syntheses of international nursing literature investigated the patient experience of intensive care (Cutler et al., 2013; Tsay et al., 2013). A variety of themes were identified, including communication, coping, dependence, disconnection, dreams, family support, fear, impaired embodiment, loss of control, proximity to death, technology, temporality, transformations of perception, trust, and unreal experiences. The patient experience of critical illness has been studied in the Northern countries since the late 1980s. In Sweden Bergbom-Engberg and Haljamae (1989) investigated patient awareness of ventilator treatment, and in Norway Gjengedal (1994) explored patient experiences and identified feelings of loneliness, fear of death, anxiety, and apprehension toward technology. These early studies were conducted during a time of deep sedation and immobilization. The context of intensive care has since evolved toward a paradigm of lighter sedation, better pain management, early mobilization, and increased family collaboration (Devabhakthuni et al., 2012; Egerod, 2009; Roberts et al., 2012). A recent survey suggested that ICUs in Nordic countries had better staffing, more inter-professional collaboration, less use of physical restraints, and provided lighter sedation than ICUs in non-nordic European countries (Egerod et al., 2013). This was supported by a Danish study that demonstrated the feasibility of a protocol of no sedation in ICU (Strøm et al., 2010). These studies have shown a humane approach in intensive care, which has also been evident in Nordic nursing programs. Influential nursing scholars such as Finish Katie Eriksson and Norwegian Kari Martinsen, have developed philosophies of caring that have inspired Nordic academia and clinical practice (Alligood, 2014). These philosophies stress the importance of genuine understanding of each unique human being. Martinsen has been particularly inspired by the works of the Danish phenomenological philosopher K.E. Løgstrup ( ), whose thinking has been described as an avenue to understanding the creation of cognition (Løgstrup, 1995, 1997). It is argued by nursing scholars, that sense-based impressions as described by Løgstrup provide a spontaneous, intuitive flash of insight, and that this insight facilitates the understanding of patient experiences (Norlyk et al., 2011). A tradition of caring is also expressed in the Nordic welfare systems and feminine societal values (Hofstede, 2001; Hofstede et al., 2010). In these welfare systems the public sector provides comprehensive tax-paid healthcare, education and social security to all members of society. In the present study we wished to explore the patient experience of intensive care within the paradigm of lighter sedation. More knowledge is needed to ensure that nursing practice is in alignment with the evolving therapies in intensive care. Our research question was whether the patient experience of ICU has changed in recent years. The aim of this meta-synthesis was to systematically review and

3 1356 I. Egerod et al. / International Journal of Nursing Studies 52 (2015) reinterpret newer Nordic studies of the patient experience of intensive care to obtain a contemporary description of human suffering during life-threatening illness. 2. Method We conducted a meta-synthesis in which we collected, assessed, and analyzed published qualitative studies with the goal of synthesizing these findings into a new whole. A meta-synthesis is described as a method that offers more than a summary of the findings; it provides new interpretations leading to new insights (Sandelowski and Barroso, 2003) Data generation The study was based on a systematic literature search using the following databases: PubMed, CINAHL, Scopus, and PsycINFO. Inclusion criteria were peer-reviewed publications using qualitative methodology in English, Danish, Swedish or Norwegian in Hand searches were made, but gray literature, reviews and editorials were excluded. Mixed-methods were included if the qualitative section was possible to identify. Studies were included if they described the adult (18 years or older) patient experience of intensive care in one of the Nordic countries and included some direct quotes from the patients. We realize that the quotes were selected by the authors of the individual studies, and that the authenticity of the quotes might have suffered during the process of translation to English from the Nordic languages. Nonetheless, we wished to hear the voices of the patients in the texts. We have not made alterations to the quotes provided. The initial search yielded 46 articles published between 2000 and After critical reflection we excluded 17 studies on the basis of title and abstract. The remaining 29 studies were assessed by all authors using the Critical Appraisal Skills Program (CASP) instrument for qualitative research. Another seven studies were excluded as they did not respond to our aim. Twenty-two articles remained for further analysis. Another five articles were excluded because the voice of the patient was absent. This left us with 17 studies for our synthesis. Five articles, published during the period , which fulfilled the inclusion criteria and CASP were added. Thus 22 articles were included in the synthesis. We organized the texts in a matrix to provide an overview and assist analysis (Table 1) Methodological framework Various approaches to meta-synthesis have been developed (Sandelowski and Barroso, 2007; Thorne et al., 2004; Thorne, 2009). Our study was inspired by Sandelowski and Barroso (2007), who describe a method for re-interpretation and synthesis of previously published research findings. A qualitative meta-synthesis is an interpretive integration of qualitative findings that are themselves interpretive synthesis of data (Sandelowski and Barroso, 2007, p. 18), implying a penetrating interpretative act of reading into and between the lines, and over-reading. We chose a hermeneutic approach (Zimmer, 2006), in which we engaged in a process of dialoguing with texts drawing on Gadamer s concepts of prejudice (pre-understanding), the hermeneutic circle, and the fusion of horizons (Gadamer, 1995). Within the Gadamerian approach our pre-understandings were essential for the movement between parts and the whole; between text and new understanding Data analysis According to Koskinen and Lindström (2013) realization of hermeneutic reading of classic texts can be operationalized in four steps. First reading: seeing the texts in their particularity and otherness; second reading: extracting larger textual units that arouse wonder; third reading: lingering reading and reflection, uncovering patterns of meaning units; and fourth reading: interpretation and new understanding. Our sources were not classic texts with lasting value, but empirical texts presenting the collective views of healthcare researchers and their informants. Nonetheless, reading was still an act of discovery, where openness and sensitivity allowed the text to touch us and arouse wonder. We had a willingness to see the otherness of the text and to let it communicate its message. In accordance with our hermeneutical approach, we asked questions and dialogued with the text during analysis and interpretation. The main questions are presented in our findings. During the first reading we got an impression of the different voices in dialog; those of the patients, the authors, and even ourselves, as we discussed the text. In the second reading, we extracted textual units of particular interest; the papers in our study were viewed as a whole as they each provided a different perspective of the patient experience in ICU (Table 2). The perspectives represented four domains: (1) body, (2) mind, (3) relationships and (4) ICU-environment. In the third reading we exposed patterns of meaning units related to the dominating issue as we listened closely to the voices of the patients, and during the fourth reading we constructed a synthesis of interpretation and new understanding Ethical considerations When using CASP one criterion is to assess each study s ethical considerations. All articles included in the metasynthesis have described and referred to approval by Ethical committees or principles. In our study our ambition has been to be fair to the text and the quotes that have been presented in the primary articles. All authors have participated in the discussion, interpretation and reading of all articles. 3. Findings Our findings are based on 22 papers from the Nordic countries, 13 from Sweden, 5 from Norway, 3 from Denmark and 1 from Finland (Table 1). The studies included 188 patients; 97 males and 91 females. We

4 I. Egerod et al. / International Journal of Nursing Studies 52 (2015) Table 1 Chronological overview of the 22 included papers. Included papers Source of data (n = 188) Focus and *Analytical approach 2000 Bergbom and Askwall (Sweden) Interviews (n = 5) 3 male, 2 female Focus: Family presence in ICU *Hermeneutics (Gadamer) 2005 Johansson and Fjellman- Wiklund (Sweden) Thematic in-depth interviews (n = 7) 4 male, 3 female; 10 days-6 years post ICU Focus: Body awareness in ICU *Grounded Theory (Glaser and Strauss) 2006 Löf et al. (Sweden) Conversational interviews (n = 9) 4 male, 5 female; months post ICU Focus: Factual and unreal experience in ICU *Inductive, descriptive thematic content analysis 2006 Wåhlin et al. (Sweden) Interviews (n = 11) 4 30 days post ICU Focus: Empowerment in ICU *Phenomenology (Husserl; Karlsson) 2007 Storli et al. (Norway) Conversational interviews (n = 3) 2 male, 1 female; months post ICU Focus: Unreal experiences *Hermeneutic phenomenology (van Manen) 2008 Fredriksen et al. (Norway) Unstructured in-depth interviews (n = 7) 2 male, 5 female Focus: Body, strength and movement 2008 Karlsson and Forsberg (Sweden) Unstructured in-depth interviews (n = 8) 4 male, 4 female; 1 week post ICU 2008 Löf et al. (Sweden) Interviews (n = 9) months post ICU 2008 Ringdal et al. (Sweden) In-depth interviews (n = 18) 9 male, 9 female; 2 3 years post injury 2008 Schou and Egerod (Denmark) Semi-structured in-depth interviews (n = 10) 8 male, 2 female; 2 5 m post ICU 2008 Storli et al. (Norway) In-depth interviews (n = 10) 4 male, 6 female; 10 years post ICU 2009 Henricson et al. (Sweden) Reflexive interviews (n = 6) 3 4 months post ICU 2010 Fredriksen and Svensson (Norway) Unstructured in-depth interviews (n = 6) 1 male, 5 female; 6 m post hosp. discharge 2011 Egerod et al. (Denmark) In-depth semi-structured interviews (n = 19) 10 male, 9 female; 6 12 m post ICU 2011 Eriksson et al. (Sweden) Open-ended interviews (n = 7) 6 male, 1 female; 2 8 weeks post ICU 2011 Forsberg et al. (Sweden) Semi-structured interviews (n = 10) 4 male, 6 female; after discharge 2011 Uotinen (Finland) Auto-ethnography (one participant) 1 female; after discharge 2012 Alpers et al. (Norway) Life world interviews (n = 6) 3 male, 3 female; 3 6 months post ICU 2012 Johansson et al. (Sweden) Interviews (n = 13) 7 male, 6 female; 2 35 days post ICU 2012 Karlson et al. (Sweden) Open-ended interviews (n = 12) 9 male, 3 female; 2 11 days post ICU 2013 Engstrom et al. (Sweden) Interviews (n = 8) 4 male, 4 female; 6 months post mechanical ventilation 2013 Lykkegaard and Delmar In-depth interviews (n = 3) 1male, 2 (Denmark) females; 3 12 months post ICU Focus: Consciousness during mechanical ventilation *Interpretive analysis (Benner) Focus: Recall of emotional reactions *Qualitative content analysis (Downe-Wamboldt, Graneheim and Lundman) Focus: Memories of injury and ICU Focus: Experience of mechanical ventilator weaning *Hermeneutic phenomenology (Crist and Tanner) Focus: Meaning of memories *Hermeneutic phenomenology (van Manen) Focus: Meaning of tactile touch Focus: Body in relationship to family Focus: Meaning of diaries for patient and family *Grounded theory (Strauss and Corbin) Focus: Meaning of family visits *Hermeneutics and narratives (Gadamer) Focus: Experience of ICU and transfer *Thematic content analysis (Downe-Wamboldt) Focus: Bodily knowledge *Testimony, emancipatory discourse and destabilized narrative Focus: Experiences of inner strength *Hermeneutics (Gadamer) Focus: Noise in ICU *Quantitative and qualitative content analysis Focus: Meaning of being conscious during mechanical ventilation *Phenomenological hermeneutics (Ricoeur; Focus: Experience of mechanical ventilation in ICU *Qualitative content analysis (Downe-Wamboldt) Focus: Dependency in ICU identified the overarching theme as: The patient experience when existence itself is at stake. This was the theme we returned to during each reading; the patients experienced existential anxiety at a profound level during critical illness. We constructed an organizing framework for analysis using the main perspectives represented in the included studies: body, mind, relationships, and ICUenvironment (Table 2). We used this framework to pose questions in relation to the main theme as described in the following. A few original quotes are provided for illustration and documentation What happens to the body when existence is at stake? The body becomes unbounded and uncontrollable; voluntary movement is lost and the contours of the body disappear (Engström et al., 2013). The body is invaded by equipment and loses its armor; body fluids escape uncontrollably. The vulnerability of the patient increases as the boundaries dissolve (Fredriksen et al., 2008; Henricson et al., 2009; Johansson and Fjellman-Wiklund, 2005). Patients experience ambivalence; disconnected from the physical body, but connected to the temporality of the

5 1358 I. Egerod et al. / International Journal of Nursing Studies 52 (2015) Table 2 Perspectives of patient experience in ICU. Body Mind Bodily knowledge Unreal experiences Body awareness Factual and unreal experience Body in relationship Meaning of memories to family Body, strength and Memories of injury and movement intensive care Meaning of tactile touch Recall of emotional reactions Relationships ICU environment Dependency Consciousness during mechanical ventilation Empowerment Experience of mechanical ventilation in ICU Family presence Experience of mechanical ventilator weaning Meaning of family visits Experience of ICU care and transfer Meaning of diaries for Experience of noise in ICU patient and family lived body. In disconnectedness the senses shift; hearing fades while smell, taste and touch are amplified. As the boundaries of the body dissolve, a new boundary may be created by human touch or the frame of the bed. Human experience moves between connectedness and disconnectedness (Henricson et al., 2009; Uotinen, 2011). Senses are distorted and reactions are sluggish; the body regresses and meaning is given at a pre-reflective level to what is sensed (Egerod et al., 2011; Storli et al., 2007; Uotinen, 2011). In a strange way I feel disconnected. I lie on my back; my head is higher than my feet, but I hardly know the exact position of my hands and feet. I feel around with my strange, numb hand until I find what I am seeking: the metallic rim of the bed. The metal feels cold and hard on my fingers...the metal feels familiar and safe, and I just want to touch it. (Uotinen, 2011) The only part of the body I could move was my head and then they put a bell close to my head so I could call the staff. So I had to limit the only movement I could make...all I could do was lie still despite being able to move my head. (Karlsson and Forsberg, 2008) 3.2. What happens to the mind when existence is at stake? The mind becomes unbounded and uncontrollable; safety is replaced by vulnerability and existential threat (Bergbom and Askwall, 2000): You lose your feeling of being a person. This is experienced as life-threatening (Karlsson and Forsberg, 2008). Being critically ill in ICU means loss of control, increased dependence, and inability to communicate and convey thoughts and feelings (Karlsson et al., 2012; Lykkegaard and Delmar, 2013). Loss of independence and inability to communicate are experienced as loneliness and a longing for togetherness, resulting in dyssynchrony with real-time and spatial disorientation. Unfamiliar bodily experiences interfere with meaning constructed in the mind (Storli et al., 2008; Uotinen, 2011). Patients shift between enduring vs. fighting for life, inclusion vs. exclusion, and belonging vs. estrangement (Lykkegaard and Delmar, 2013). Patients need acknowledgment and connectedness to sustain dignity, strength, and will to live (Bergbom and Askwall, 2000; Fredriksen et al., 2008; Henricson et al., 2009; Schou and Egerod, 2008). A sense of togetherness promotes a will to fight for a future (Alpers et al., 2012; Wåhlin et al., 2006)....I could not remove myself from a very uncomfortable situation. I could just keep lying there...i put up with everything because I felt it was the only choice I had. (Lykkegaard and Delmar, 2013)...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. (Wåhlin et al., 2006) 3.3. What happens to relationships when existence is at stake? The experience of abandonment leads to existential loneliness (Egerod et al., 2011; Löf et al., 2008; Storli et al., 2007). The patient searches for meaning in their suffering, not knowing if anyone will come to their rescue (Ringdal et al., 2008; Storli et al., 2008). Being alone in lifethreatening circumstances and losing control is reflected in sensations and dreamlike experiences (Engström et al., 2013; Löf et al., 2006). The patient exists in a terrifying world of hallucinations and nightmares (Löf et al., 2008), where familiar faces or voices of family members become a lifeline to reality and to the future (Alpers et al., 2012; Bergbom and Askwall, 2000; Eriksson et al., 2011; Forsberg et al., 2011; Fredriksen and Svensson, 2010; Löf et al., 2006; Ringdal et al., 2008; Storli et al., 2008). A conflict between dependency and empowerment emerges (Lykkegaard and Delmar, 2013; Wåhlin et al., 2006), opening an existential hiatus between life vs. death, meaning vs. meaninglessness, and safety vs. abandonment. Patients are in an ambiguous state where feelings shift between security vs. insecurity, trust vs. fear, good vs. evil, meaning vs. chaos, and strength vs. helplessness (Alpers et al., 2012; Karlsson and Forsberg, 2008; Löf et al., 2008; Storli et al., 2007). The fight for survival presents itself as vivid experiences somewhere outside of ICU (Eriksson et al., 2011; Löf et al., 2008; Storli et al., 2007), requiring the kind of strength found in caring relationships. Close human relationships are protective, providing security, inner strength, and a connection to the real world. Someone talking kindly to you all the time, even though you re not really awake because of drugs or anesthetics. Saying nice things. You really can hear them, you don t understand what they say, but you get this impression. Listening to someone talking to you it s like a lifeline to hold on to so you don t just give up and die. (Bergbom and Askwall, 2000) 3.4. What happens to the perception of the ICU environment when existence is at stake? The ICU is fraught with disturbing noises and unpleasant procedures preventing rest and sleep. Patients find them-

6 I. Egerod et al. / International Journal of Nursing Studies 52 (2015) selves within a cacophony of sounds and an uncontrollable barrage of sensations (Johansson et al., 2012). Unable to recognize their surroundings the patients wonder: What do I hear? and What do I smell? Meaning appears to be rooted in previous experiences that might lead to sensations of being somewhere else (Storli et al., 2007). The ICU environment and nursing care are incorporated in the lived body with moods and emotions leading to strange experiences (Engström et al., 2013; Löf et al., 2006). Competent and compassionate nurses provide security and instill strength (Alpers et al., 2012; Forsberg et al., 2011; Schou and Egerod, 2008). Time and space are distorted; the patient needs a sense of coherence to bridge events of past, present and future, to provide a new selfunderstanding. The present may pose an existential threat, but also a potential for inner strength and will to live (Alpers et al., 2012; Bergbom and Askwall, 2000; Johansson and Fjellman-Wiklund, 2005; Löf et al., 2006; Storli et al., 2007, 2008). The way I see it, it was like a long trip I was on a trip lasting more than 40 years but completed in only a couple of weeks. In those weeks I went through my entire lifetime, with events from childhood and adulthood knitted into one another in a new kind of time...it has given me the opportunity to sort of understand my life and myself in a new way! (Storli et al., 2007) 3.5. Final analysis and interpretation Our final analysis unfolded four themes, offering new interpretations of the sample as a whole (Sandelowski and Barroso, 2007, p. 151): existing in liminality, existing in unboundedness, existing in mystery, and existing on the threshold. We draw on van Gennep s concept of liminality to interpret these themes: Consequently, I propose to call the rites of separation from a previous world, preliminal rites, those executed during the transitional stage liminal (or threshold) rites, and the ceremonies of incorporation into the new world postliminal rites (van Gennep, 1960, p. 21). We regard the transitional stage as the stage where reality melts into imagination; being neither here nor there. This stage has also been described as the existential hiatus between not-living and death (Hammer, 2002) Existing in liminality Human beings live in relationships and need acknowledgment to sustain their identity. During critical illness life is disrupted and the fundamental conditions for relational existence are changed. Suddenly patients are faced with solitude and uncertainty, perhaps drawn into an existential hiatus. Inability to act and think normally provokes existential anxiety that may later be recounted as nightmares or hallucinations. Patients escape to an inner world, avoiding reality and fighting for survival. Lapsing into a liminal state, the body is cared for in real-time, and the mind continues at different temporal pace; past, present, and future are interwoven. During emergence, patients might wonder: Where am I?, Am I in danger?, Will I survive? or Will anyone help me? Existing in unboundedness In ICU the body is confined and at the mercy of strangers. The distinction between the subjective and objective body dissolves into a sensation of unboundedness. The physical body is externally passive while there is inner turmoil. Unboundedness may be described as unreal experiences, vivid dreams, and incoherent memories Existing in mystery The solitary patient is internally bound by the limits of his or her imagination and previous experience. Bodily knowledge is a mystery of untold versions of the person s biography. Bodily narratives are unknown to the conscious mind, and consequently cannot be interrupted or altered. This might later be expressed as fragmented memories and inability to separate reality and imagination Existing at the threshold The existential hiatus starts the movement toward ambiguity, sustained by unboundedness and mystery. A liminal space is opened, characterized by dichotomies of connectedness vs. disconnectedness, loneliness vs. togetherness, security vs. insecurity, and weakness vs. strength and will to live. The liminal space describes a threshold that must be overstepped to transition toward life or death. In intensive care, the transition to life is assisted by caring others; herein is the ethical demand of caring and the possibility of life-sustaining care. 4. Discussion The aim of this meta-synthesis was to systematically review and reinterpret newer Nordic studies of the patient experience of intensive care to obtain a contemporary description of human suffering during life-threatening illness. Our main finding was that although treatment modalities have become less invasive, sedation is lighter, and pain management more consistent, the patients still suffer unboundedness of body and mind. The findings in Nordic publications are similar to international findings (Cutler et al., 2013). Our study, however, has provided a deeper description and interpretation of the patient experience during critical illness. The goal of synthesizing qualitative studies is to provide a stronger statement than a single study can offer. We hope to have added insight and inspiration into the collective body of knowledge within this area of research. In our interpretation, loss of control during critical illness might drive patients to escape into an inner world. On immersion into to this world they descend into a liminal space of ambiguity offering opportunities for change and transition. The concept of liminality helped us to explore the patient experience of overstepping a threshold (limen). Malpas (2008) described an essential liminality to the body containing movement; crossing or moving away, moving into or out of. Liminality has been used as a framework for understanding the lived experience of life-threatening illness (Blows et al., 2012; Bruce et al., 2014; Kelly, 2008; Thompson, 2007), and it has been suggested that liminal experiences carry a potential for personal growth during recovery (Johnston, 2011). Metaphorically the patient

7 1360 I. Egerod et al. / International Journal of Nursing Studies 52 (2015) travels to a crossroads offering the choice of life vs. death. The path is unfamiliar, but finding meaning along the way instills strength and provides new life-understanding. A sense of liminality, being neither here nor there, was evident in many of the patient experiences in our sample. Life disruption created an existential hiatus of being in-between states. We found that transition back to life was aided by caring others that acknowledged the patient as a person. The synthesis of studies opened a window through which we could view how nursing care held the potential to assist the patient toward connectedness, security, and strength. Care has been viewed by Martinsen (2012) as an ethical practice, requiring the nurse to attune herself to the patient. Inspired by the works of Løgstrup (1984), Martinsen described a fictitious space, wherein the nurse and patient meet in attunement. This is, perhaps, the liminal space providing possibilities of transition. We believe that the essence of our findings is a deeper understanding of human suffering during critical illness. Our study offers an interpretation of the patient experience that suggests how nurses can help to frame the unbounded body and mind. When existence is at stake, nursing interventions can touch the core of the patient. We assume the Nordic perspective supported these insights because the nursing values espouse this particular kind of thinking. In our interpretive act, we unfolded the themes of existence in liminality, unboundedness, mystery, and at the threshold of possibilities. In this, we offer new insights for intensive care nurses who wish to care for patients on the patient s own terms. Viewing nursing care as an ethical practice is, however, not unique to the Nordic context. Internationally nursing scholars have offered a variety of interpretations of caring. Morse et al. (1991) identified five conceptualizations of caring: caring as a human trait, a moral imperative, an affect, an interpersonal interaction, and an intervention. As a moral imperative, caring was emphasized as mutual, reciprocal and interactive; directed toward the preservation of humanity, with the goal of enhancing human dignity. According to Parse s (1998) school of thought, the human being chooses to move beyond the actual, contextual situation, with possibilities: becoming is the continuously changing intersubjective process of transcending with possibilities. A person does not transcend alone, but with the nurse or significant other. This is in accordance with our findings. The inner turmoil of an ICU patient has been described in a first-person account by Misak (2005), who narrates the physical agony of pain and discomfort related to mechanical ventilation, and the terrible experience of overstepping the fuzzy line that separates sanity from madness. Misak describes her condition as ICU psychosis, which we assume is the same as delirium. Delirium is difficult to detect in deeply sedated patients, but in recent years, lighter sedation has revealed signs of delirium, hallucinations, and unreal experiences, even in patients experiencing hypoactive delirium (Egerod et al., 2011), which might be interpreted as an expression of the liminal state and inner turmoil in ICU patients. Although the presence of close relatives is usually expected to have a soothing effect on the patient, some of the texts in our study provided examples of patients that were exhausted by the presence of relatives (Bergbom and Askwall, 2000). It is important to include negative examples to increase the trustworthiness of the study. Each quote from the primary informants should be read and understood in context to ensure the best interpretation of the text. The dependability of our study was increased by using consistent methodology throughout the study: transparent strategies of selecting and appraising the literature, and analyzing the texts. Credibility was enhanced by investigator triangulation, where all authors read and discussed all texts. Sandelowski and Barroso (2007, p. 230) conceptualize this as negotiated consensual validity. We were aware that analysis was affected by the voices of patients, authors of the studies, and ourselves. Transferability was discussed by comparing our findings to external literature. We believe that although many patient experiences have been consistent, the world of intensive care is evolving toward more mobile and awake patients, which will probably impact future studies. 5. Conclusions The main finding in our study is that human suffering during intensive care is still evident although sedation is lighter and the environment is more humane. The patient experience is still affected by life-threatening illness and invasive procedures inducing the patient to drift between authentic and fictitious worlds. The inner life of the patient is wrought with uncertainty requiring sustained vigilance on the part of professionals and family. Nordic nursing studies have a particular focus on the existential concerns of ICU patients. Our meta-synthesis suggests that patients descend into a liminal state, where they face the choice of life or death. Caring values in nursing, attuned caring, and close relatives, play an important role in helping the patient to transition back to life. Acknowledgement We would like to thank Letterstedska Foundation for financial support, which made our research-meetings possible. Conflict of interest: None declare. Funding: None. Ethical approval: This was a meta-synthesis using previously published ethically approved material. Additional ethical approval was not required for this study. 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