Patients’ lived body experiences in the intensive care unit and beyond - a meta-ethnographic synthesis

ABSTRACT

Introduction

Physical therapists supporting patients in intensive care unit (ICU) rehabilitation can improve their clinical practice with insight in patients’ lived body experiences.

Objective

To gain insight in patients’ lived body experiences during ICU stay and in recovery from critical illness.

Methods

Through a comprehensive systematic literature search, 45 empirical phenomenological studies were identified. Patients’ lived body experiences were extracted from these studies and synthesized following the seven-phase interpretative approach as described by Noblit and Hare.

Results

Three lines of argument were illuminated: 1) “recovery from critical illness starts from a situation in which patients experience the lived body as unable;” 2) “patients experience progress in recovery from critical illness when the lived body is empowered;” and 3) “recovery from critical illness results in a lived body changed for life.” Eleven third-order constructs were formulated as different kinds of bodies: 1) “an intolerable body;” 2) “an alienated body;” 3) “a powerless body;” 4) “a dependent body;” 5) “a restricted body;” 6) “a muted body;” 7) “a touched body;” 8) “a transforming body;” 9) “a re-discovering body;” 10) “an unhomelike body;” and 11) “a remembering body.”

Conclusion

Patients’ lived body experiences during ICU stay and in recovery from critical illness have richly been described in phenomenological studies and were synthesized in this meta-ethnography.

KEYWORDS:

• Critical illness
• intensive care
• lived body
• systematic review
• qualitative research

Introduction

Critical illness is “a state of ill health with vital organ dysfunction, a high risk of imminent death if care is not provided and the potential for reversibility” (Kayambankadzanja et al., 2022). Critically ill patients are admitted to an intensive care unit (ICU) to enable intensive monitoring and treatment. During ICU stay, patients can face unreal experiences and dreams, proximity to death, transformation and perception of the body and time, and dependence and desire for contact with others (Cutler, Hayter, and Ryan, 2013). Moreover, ICU patients may have to endure physical discomfort including pain, sleeplessness, thirst, and breathing difficulties (Topçu, Ecevit Alpar, Gülseven, and Kebapçı, 2017).

Through improved medical technology, nowadays, over 90% of patients survive their ICU stay (www.stichting-nice.nl/datainbeeld/public). However, survival and discharge from the ICU do not mean that patients are fully recovered. An ICU admission can dramatically change a patient’s life (Tembo AC, 2017). Many ICU patients suffer from long-lasting impairments related to their critical illness and ICU treatment, collectively known as post-intensive care syndrome (PICS) (Needham et al., 2012). PICS concerns impairments in the physical, cognitive or mental domain (Geense et al., 2021). To prevent deconditioning during ICU stay, mobility interventions are started as soon as possible, referred to with the term early mobilization (Boelens, Melchers, van Zanten A, and van Zanten, 2022; Devlin et al., 2018). These mobility interventions are continued until hospital discharge. Post-discharge, patients are typically offered ICU rehabilitation, which includes rehabilitation interventions to increase and restore their functional capacities.

The literature on early mobilization and ICU rehabilitation is mainly focused on safety, feasibility, and effectiveness of interventions, emphasizing objective outcomes starting from a third-person perspective (Zhang et al., 2022). The first-person perspective, including what it means to patients to mobilize in these situations, is often overlooked. However, studying patients’ lived experiences can show how illness or impairment affect a person’s subjectivity, agency, and sense of self (Slatman, 2014). Moreover, it can provide patients with concepts and language with which they can articulate their illness experience (Carel and Kidd, 2014).

Both early mobilization and later rehabilitation interventions are typically provided by physical therapists (Lippi et al., 2022). Physical therapists work with the body, and primarily focus on physical symptoms and problems. Nevertheless, physical therapists are known to have negligible philosophical-theoretical underpinnings about the body (Nicholls and Gibson, 2010). Several critical thinkers suggested that the dominant biomedical view on the body in physical therapy should be complemented with renewed accounts of the body to fill gaps between theory and practice (Halák and Kříž, 2022; Nicholls and Gibson, 2010). Phenomenological studies can be used to explore patients’ lived body experiences (Sandström, 2007; Stott H et al. 2021). To date, only few studies have explicitly studied patients’ lived body experiences while being admitted to the ICU or in ICU recovery (Fredriksen, Talseth, and Svensson, 2008; Uotinen, 2011). However, knowing that a substantial amount of phenomenological studies are conducted among this patient group a thorough synthesis of the lived body experiences from these studies could fill this gap.

Inspiring examples showed that meta-ethnographies provide a suitable approach to synthesize patients’ lived body experiences, bearing valuable implications to improve healthcare (Bootsma et al., 2020; Øien and Dragesund, 2022). Therefore, the objective of this meta-ethnography is to gain insight in patients’ lived body experiences during ICU stay and in recovery from critical illness.

Theoretical perspective – the phenomenology of embodiment

Phenomenology is a philosophy and research tradition studying human experiences. It was first developed by Edmund Husserl (1858–1938), who advocated studying the things as they appear, not as they are in itself, but how they are perceived and what they mean to people (Zahavi, 2018). This requires leaving the natural attitude, to bracket off fixed beliefs, and to set aside theoretical assumptions about truth and world. The current study uses the perspective from the phenomenology of embodiment as developed by Merleau-Ponty (1908–1961) (Merleau-Ponty, 2013).

Merleau-Ponty (2013) takes embodiment as a fundamental starting point for human experience, because in action and perception the body forms our primary relation to the world. He argued that the body is, therefore, not to be classified as a thing among the things, but a thing that we are ourselves. In other words, we are a body subject (Halák and Kříž, 2022). The notion of intentionality, a key concept in phenomenology, means that a subject’s experience is always directed or oriented toward something (Gallagher, 2012). Merleau-Ponty (2013) described that the body itself shows intentionality, a directedness toward things in the world, which is first, and foremost, a practical and motor intentionality (Weiss et al., 2019). This is in strong contrast with an “intentionality of representation,” which in a mechanistic, psychophysical, approach envisions realization of movement (Halák and Kříž, 2022). According to Merleau-Ponty (2013) the world appears to us because we perceptually orientate ourselves in the world, not because we think (Slatman, 2014). Consciousness and thinking are not separated from the body, they are intertwined, and are in the world (Doyon and Wehrle, 2020). Therefore, motor intentionality does not correspond to the act of “I think,” but to processual awareness of what “I can” practically do within a situation (Halák and Kříž, 2022; Slatman, 2014).

Methods

We followed Noblit and Hare (1988) interpretative and iterative approach for conducting a meta-ethnography. This approach, and the eMERGe reporting guideline (France et al., 2019), provide seven phases: 1) formulating the research question; 2) identifying and selecting studies; 3) repeated reading of selected studies; 4) determining how studies are related through coding and comparing conceptual content; 5) translating the studies into one another; 6) synthesizing the translations; and 7) expressing the synthesis. The author group consisted of a multidisciplinary team, including three physical therapists (RvO, PvW, and NK), a physical therapist/sociologist (GvO), an ICU nurse (MvB), and an ethicist (AO). This review protocol was registered in Prospero (CRD42020184593).

Search strategy

After defining the aim of this study (phase 1), we set up a strategy to find relevant studies (phase 2). In collaboration with a librarian (OC), the first author (RvO conducted a comprehensive systematic literature search (Appendix 1). The following databases were searched from inception until November 2021: MEDLINE, EMBASE, CINAHL, PsychINFO, Web of Science, and Google Scholar.

Process of reviewing and selecting potential primary studies

Inclusion criteria were: 1) adult patient experiences during ICU stay or in recovery from critical illness; 2) bodily or embodied experiences; and 3) study used phenomenological methodology. Reasons for exclusion were: 1) palliative care; 2) reported in language other than English or Dutch; 3) full text was not available; 4) ineligible study design (e.g. meta-study and test of model); or 5) ineligible article type (e.g. abstract congress, thesis, and commentary). After the removal of duplicates, all titles and abstracts (N = 11,721) were reviewed against the predetermined eligibility criteria independently by two reviewers (RvO and GvO), and categorized as “possibly relevant” or “clearly not relevant.” The “possibly relevant” abstracts were included in the full-text eligibility assessment. Then the full-texts (N = 361) were compared against the eligibility criteria by two reviewers independently (RvO and GvO). Disagreements were resolved in a consensus meeting between both reviewers (RvO and GvO). As displayed in the flow diagram of the study selection process (Figure 1), this resulted in a total of 45 primary studies included in this meta-ethnography.

Figure 1. Flow diagram of study selection process.

Quality appraisal

To gain insight into the methodological quality, we assessed all studies included using the Critical Appraisal Skills Programme (CASP) qualitative studies checklist (www.casp-uk.net). Included studies were independently assessed by two reviewers (RvO and NK). Disagreements were resolved in a consensus meeting between both reviewers. Outcomes are provided in Appendix 2.

Data analysis and synthesis

After selection of the studies, study characteristics were extracted by the first author (RvO) which are displayed in Table 1. Both analyzing authors (RvO and GvO) carefully read and re-read the studies included to gain familiarity with the data (phase 3). In order to determine how the studies were related, two reviewing authors (RvO and GvO) independently selected text sections (phase 4) according to methods as described in the worked example of Britten et al. (2002). First-order constructs, involving patient quotes, were coded in the results sections. Second-order constructs, involving authors’ interpretations (i.e. themes and concepts) about patients’ experiences, were coded in the results, discussion and conclusion sections. Subsequently, both reviewing authors (RvO and GvO) independently looked for patterns and structures in the data, looking through their coded first-and second order constructs selecting keywords, concepts and metaphors. In a consensus meeting, both reviewers’ lists were combined. The outcomes of this translation are provided in Appendix 3. The translation led to a general idea of themes, which were then presented in a two-hour group meeting. During the group discussion (RvO, AO, GvO, MvB, PvW and NK) we found that these themes seemed associated with specific phases in recovery: crisis, normalization, and post-discharge (Egerod and Christensen, 2009; Jensen et al., 2017). With the outcomes of this group meeting, we progressed with the next phase: translating findings from different studies into one another with the goal to create unique meaningful third-order constructs (phase 5). In this phase, all first and second-order constructs were now ordered in the preliminary third-order constructs, by going through all studies once more. This resulted in a matrix, with on the vertical axis the studies included and on the horizontal axis the third-order constructs, or body themes. This created a workable document to compare the patients’ experiences in the different studies. Through filling in the matrix, all first and second-order constructs were once more analyzed concerning differences (i.e. refutational translations) and overlap (i.e. reciprocal translations). In order to preserve context and meaning of the relationships between concepts, within and across studies analytic memos were written throughout the translation process. The matrix is available to readers upon reasonable request. With the matrix, the authors were able to start writing theme descriptions in the results section. Four of the authors (RvO, AO, GvO and NK) were intensively involved in the writing process. Throughout this writing process, the wording and order of the third-order constructs evolved. Through discussion among all authors, potential alternative interpretations were explored. After a first draft of the results section of this manuscript, a second consensus meeting was performed with all authors. In this meeting, we evaluated the third-order constructs and discussed possibilities for lines of arguments, as an overarching explanation of patients’ lived body experiences during ICU stay and during recovery from critical illness (phase 6) (Bootsma et al., 2020). Conceptual ideas were discussed in the group, trying to avoid bias by consciously reflecting on our individual positions and perspectives.

Table 1. Study characteristics.

Authors, year, country, sample size	Setting	Study aim	Age (years)	Critical illness	Theoretical approach	Timing of data collection
Albanesi et al. (2022), Italy, n = 11	The Cardiac ICU of a cardiology research hospital	To describe Cardiac Surgery patients’ lived experiences.	Range: 42–75	Eight patients presented with a valve pathology; two of them had a vascular pathology. One patient was suffering from both diseases, and one was hospitalized as an emergency	A qualitative study, adopting an interpretative phenomenological analysis approach	At least 2 weeks after ICU discharge
Vester, Holm, and Dreyer (2021), Denmark, n = 12	Two multidisciplinary ICUs in a university hospital	To explore patients’ and relatives’ experiences of everyday life after critical illness.	18+	Not reported	A phenomenological-hermeneutic approach	After discharge from the hospital or rehabilitation ward.
Lee, Park, and Palese (2021), South Korea, n = 15	Two university hospitals	To derive an in-depth understanding of the transfer experience of ICU patients in South Korea through a phenomenological analysis.	Range: 29–64	Various	A phenomenological approach according to Colaizzi	3 to 5 days after ICU discharge
Ellingsen et al. (2021), Norway, n = 9	Two hospitals and one patient organization	To provide a deeper understanding of how former critically ill patients narrate their own experiences of the illness trajectory from the acute stage throughout rehabilitation and long term follow up.	Mean: 60	Various severe circulatory, respiratory or neurological diseases	A study grounded in phenomenological philosophy	All patients had been admitted to an intensive care unit over the last 5 years
Alexandersen et al. (2021), Norway, n = 17	A major hospital	To provide insights into what promotes and challenges inner strength and willpower in formerly critically ill patients back home after a long- term ICU stay.	Median: 55 Range: 27–76	Diagnoses included serious disease, severe trauma and complication	A qualitative hermeneutic- phenomenological approach according to Dahlberg	6 to 20 months after hospital discharge
Umberger and Thomas (2019), USA, n = 8	A medical ICU	To explore the experiences of sepsis survivors after 1 year of their index ICU stay.	Range: 37–74	Sepsis	A phenomenological study, guided by Merleau-Ponty’s philosophy	At least 1 year after ICU discharge
Alexandersen et al. (2019), Norway, n = 17	A university hospital	To explore aspects that promote and challenge long‐term ICU patients’ inner strength and willpower.	Mean: 55.2 Range: 27–76	Various	A qualitative, hermeneutic‐phenomenological approach	6 to 18 months after ICU discharge
Tingsvik, Hammarskjold, Martensson, and Henricson (2018), Sweden, n = 12	Three different hospitals	To explore the meaning of being a patient on mechanical ventilation during the weaning process in the ICU.	Mean: 66 Range: 43–82	All patients had previously been hospitalized for a variety of medical and surgical diagnoses	A hermeneutic- phenomenological approach according to Van Manen	2 to 4 months after ICU discharge
Felten-Barentsz et al. (2018) Netherlands, n = 12	A university hospital	To explore patient perspective regarding the impact of hydrotherapy on critically ill ventilated patients.	Range: 33–80	Cardiac surgery (n = 3); pulmonary disease (n = 3); high energetic trauma (n = 2); gastro-intestinal surgery (n = 2); out of hospital cardiac arrest (n = 1); complicated stem cell transplant (n = 1)	A phenomenological approach	6 to 12 weeks after hospital discharge
Holm and Dreyer (2017), Denmark, n = 4	Two multidisciplinary ICUs	To explore adult ICU patients’ experience of being conscious during endotracheal intubation and mechanical ventilation.	Range: 61–86	Pleural effusion, Multi-trauma, Pneumonia, Pleural effusion	A phenomenological-hermeneutic approach	1 to 2 days after extubation
Da Cruz de Castro and Rebelo Botelho (2017), Portugal, n = 12	A hospital	To assess the experience of persons with critical condition during hospitalization in an ICU.	Range: 27–77	Not reported	A phenomenological descriptive design	Not reported
Mylén, Nilsson, and Berterö (2016), Sweden, n = 11	A neurosurgical ICU	To explore the lived experiences of conscious patients in neurosurgical intensive care	Range: 37-81	Not reported	An interpretive phenomenological approach	2 to 14 months after discharge
Whitehorne, Gaudine, Meadus, and Solberg (2015), Canada, n = 10	Two acute care hospitals	To understand the lived experience of intensive care for critically ill patients who experienced delirium.	Range: 46–70	Critically ill patients who experienced delirium	Heideggerian hermeneutic phenomenology according to van Manen	After transfer from the ICU to a medical or surgical unit
Tembo, Higgins, and Parker (2015), Australia, n = 12	A 16 bed ICU in a large regional referral hospital	To describe the lived experience of people who experienced critical illness in ICU using a hermeneutic phenomenological approach in the DSI context.	Range: 20–76	Diverse	A hermeneutic- phenomenological approach	2 weeks after ICU discharge and 6 to 11 months later
Stayt, Seers, and Tutton (2015), UK, n = 19	A university teaching hospital	To explore patients’ experiences of technology in an adult ICU.	Range: 32–86	Elective post-operative admission, sepsis, pneumonia and trauma	Heideggerian phenomenology	12 weeks after discharge
Palesjö, Nordgren, and Asp (2015), Sweden, n = 7	An ICU with six beds	To describe and interpret the essential meaning of the lived experiences of being in a critical illness-recovery process after a life-threatening condition.	Range: 24–61	ARDS, cardiomyopathy, multi-trauma, cardiac arrest, septic shock, aspiration pneumonia after surgery to remove a malignant brain tumor, septic shock	A phenomenological hermeneutic approach	2 to 4 years after ICU discharge
Lykkegaard and Delmar (2015), Denmark, n = 3	An ICU at a larger university hospital	To explore the perceived meaning of being dependent on care as experienced by intensive care patients.	Range: 27–78	Surgical complication, medical problem	A phenomenological hermeneutic approach	6 to 12 months after ICU discharge
Moen and Nåden (2015), Norway, n = 7	An average-size ICU accommodating eight patients	What are the experiences of former intensive care patients of having their dignity upheld during their stay in the ICU?	Notreported	Not reported	A phenomenological approach according to Giorgi	5 to 12 months after ICU discharge
Torheim and Kvangarsnes (2014), Norway, n = 10	Two ICUs	To describe experiences of care of patients with advanced COPD when suffering acute exacerbation in ICUs.	Range 45–85	Patients diagnosed with COPD	A phenomenological descriptive design	After ICU discharge or within 2 weeks after hospital discharge
Alguindy, Mohamed, and Gado (2014), Egypt, n = 14	The ICU of cardiothoracic surgeries at a University Hospital	What are the personal lived experiences of patients connected to mechanical ventilator during recovery period after open-heart surgery at Al Maniel University Hospital?	Range: 21–53	Patients who underwent cardiothoracic surgery	A qualitative phenomenological design	Not reported
Olausson, Lindahl, and Ekebergh (2013), Sweden, n = 9	Three general ICUs, two in university hospitals and one in a regional hospital	To reveal the meanings of the ICU settings as a place of care.	Range: 38–80	Septic shock, Guillain-Barré syndrome, respiratory failure, pancreatitis, trauma, ruptured aorta aneurism, respiratory failure, trauma, endocarditis	A phenomenological approach	Not reported
Lykkegaard and Delmar (2013), Denmark, n = 3	An ICU of a larger university hospital.	To explore the perceived meaning of being dependent on care for intensive care patients.	Range: 22–76	Surgical complications, complicated postoperative course, medical problem	A phenomenological hermeneutic according to Ricoeur	3 to 12 months after discharge
Locsin and Kongsuwan (2013), Thailand, n = 10	Not reported	To describe the meaning of the experiences of patients who were dependent on technologies while being cared for in ICUs.	Mean: 44Range: 22–76	Various	A hermeneutic phenomenology design according to Van Manen	2 months to 5 years after hospital discharge
Tembo, Parker, and Higgins (2012), Sweden, n = 12	A tertiary referral hospital ICU	To enhance understanding experiences based on the descriptions of the participants	Not reported	Not reported	A hermeneutic phenomenological approach according to van Manen	2 weeks after ICU discharge and at 6 to 11 months later
Karlsson, Bergbom, and Forsberg (2012), Sweden, n = 12	An eight-bed ICU in a county hospital	To illuminate the lived experience of patients who were conscious during mechanical ventilation in an ICU.	Mean: 58 Range: 23–88	Epiglottitis throat abscess, stroke, myelitis, laryngeal cancer, multi-trauma, carotid surgery, airway obstruction, sepsis, pneumonia, pneumothorax	A phenomenological-hermeneutic approach according to Ricoeur	4 to 11 days after ICU discharge
Johansson, Bergbom, and Lindahl (2012), Sweden, n = 13	A general ICU with eight beds at a county/regional hospital	To illuminate the meanings of being critically ill in a sound-intense ICU patient room, as disclosed through patients’ narratives.	Range: 51–86	Pancreatitis, whipple-surgery, aortic aneurysm, guillain-barre´, pulmonary embolism, rectal cancer surgery, pain treatment, pneumonia, thrombosis, sepsis	A phenomenological hermeneutic approach	2 to 35 days after ICU discharge
Cypress (2011), USA, n = 5	An adult ICU in an urban, nonprofit, nonsectarian community hospital.	To describe and understand the lived ICU experience of nurses, patients and family members during critical illness.	Range: 23–70	Haemorrhagic stroke, diabetic ketoacidosis, asthma, emphysema, respiratory failure, multiple gunshot wounds, exacerbation of congestive heart failure	A phenomenological approach according to Merleau-Ponty	The first interview was conducted after ICU discharge. The second interview was conducted 4 days after the first interview
Fredriksen and Svensson (2010), Norway, n = 6	Not reported	To inquire and understand the patients’ experience of the body in relation to their significant others during critical illness.	Range: 20–75	Acute infection (n = 1); pulmonary disease (n = 2); infectious disease (n = 1); surgery for cancer (n = 1); intoxication due to substance abuse (n = 1)	A phenomenological hermeneutic approach according to Kvale	Within 6 months after hospital discharge
Foster (2010), UK, n = 3	An acute NHS Trust	Describing the experience of tracheostomy tube as lived by a group of people who had this tube inserted as a part of their critical illness or as a procedure related to an acute event	Not reported	Tracheostomy	Scientific phenomenology	Not reported
Wang, Zhang, Li, and Wang (2009), China, n = 11	A six-bed ICU of a university teaching hospital	To understand patients’ intensive care experience while receiving mechanical ventilation in ICUs.	Mean: 60 Range: 33–78	The mean score of acute physiology and chronic health evaluation (APACHE) was 21.4 (range: 14–30)	An ontological phenomenological approach according to Heidegger	3 to 14 days after the transfer from the ICU
Storli and Lind (2009), Norway, n = 10	A nine-bed general ICU in a university hospital,	To explore the meaning of patients’ lived experience of being followed-up in a program consisting of patient diaries, post-ICU conversations and visits back to the ICU.	Mean: 52 Range: 24–82	Admission diagnoses ranged from multi-trauma and extensive surgery to life-threatening infections	A phenomenological approach according to Kari Martinsen	about 6 months and again about 18 months after hospital discharge
Henricson, Segesten, Berglund, and Määttä (2009), Sweden, n = 6	Two general ICUs	To illuminate the meaning of receiving tactile touch when being cared for in an ICU.	Range: 54–78	The patients suffered from heart disease, heart surgery or intestinal surgery	A phenomenological – hermeneutic according to Ricoeur	3 to 4 months after hospital discharge
Storli, Lindseth, and Asplund (2008), Norway, n = 10	An ICU at a university hospital	To explore the meaning of living with memories from intensive care.	Range: 18–65	Admission diagnoses ranged from multi-trauma and extensive surgery to life-threatening infections	A phenomenological approach according to van Manen, Dahlberg and Merleau-Ponty	10 years after hospital discharge
Karlsson and Forsberg (2008), Sweden, n = 8	A rural hospital.	To investigate experiences of being conscious during ventilator treatment in the ICU from a patient perspective.	Mean: 46 Range: 21–81	Epiglottitis (n = 3); sepsis due to various causes (n = 3); Guillain-Barré syndrome and post-surgical complications involving perforation of the pericardium	Hermeneutic phenomenology	Not reported
Fredriksen, Talseth, and Svensson (2008), Norway, n = 7	Three hospitals	To inquire and understand the ways the body and its experience appear when the phenomena of strength and movement are altered.	Range: 34–82	Chronic lung disease with complication (n = 2)s; heart surgery with complications (n = 1); infectious disease with complications (n = 2); orthopedic surgery with postoperative complications (n = 1)	A phenomenological-hermeneutic approach according to Ricoeur	Within 6 months after hospital discharge
Storli, Lindseth, and Asplund (2007), Norway, n = 3	A nine-bed ICU in a university hospital.	To look more closely into this type of experience by turning to its meaning as reflected on by patients themselves.	Range: 30–60	Sepsis, multi-trauma, post-operative complications	A phenomenological approach	About 6 months after hospital discharge
Almerud, Alapack, Fridlund, and Ekebergh (2007), Sweden, n = 9	A moderately large hospital	To develop a knowledge base of what it means to be critically ill or injured and cared for in technologically intense environments.	Mean: 59 Range: 45–74	Not reported	A phenomenological approach according to Giorgi and Dahlberg	After ICU discharge or a few days after hospital discharge
Johnson, St John, and Moyle (2006), Australia, n = 9	CCUs	To describe and interpret the meaning for patients of being on long-term mechanical ventilation in a CCU.	Range: 21–69	Not reported	An ontological – phenomenological approach according to Heidegger	2 weeks to 2 months after hospital discharge
Ballard et al. (2006), USA, n = 11	Seven critical care areas within three suburban hospitals	To determine and describe the remembered experiences of critical care patients who were given neuromuscular blocking agents and sedatives and/or analgesics to facilitate mechanical ventilation, improve hemodynamic stability, and improve oxygenation.	Range: 19–69	Respiratory failure, shock, overdose, COPD, nausea and vomiting, dizziness and weakness, hyperosmolar state	A phenomenological approach	During admission to the critical care unit or another unit within the hospital
Strahan and Brown (2005), UK, n = 10	Not reported	To explore and describe the lived experiences of patients following transfer from the ICU.	Range: 18–77	Trauma (n = 4); vascular (n = 2); neurology (n = 2); thoracic (n = 1) and orthopedic (n = 1)	A Husserlian phenomenological approach	3 to 5 days after ICU discharge
Sheen and Oates (2005),Australia, n = 5	Not reported	It is easy for health professionals to assume that unresponsive patients are not feeling anything under their sedation. The aim of this research was to explore this phenomenon.	Not reported	Not reported	Phenomenology	6 to 12 months after hospital discharge
Del Barrio et al. (2004),Spain,n = 10	Not reported	To describe the liver transplant patient’s experience in the ICU.	Mean: 55	Liver transplant	A phenomenological descriptive study	1 to 12 months after transplant
Papathanassoglou and Patiraki (2003), Greece, n = 8	Not reported	To explore the lived experience of individuals with a past hospitalization in an ICU, with focus on their dreams.	Not reported	Not reported	An Interpretive hermeneutic phenomenological design	Four participants had been discharged between 12 and 24 months ago, and four between 4 and 6 years ago
Jordan, van Rooyen, and Strümpher (2002), South Africa, n = 5	Not reported	To identify, explore and describe the experiences of patients who were connected to a mechanical ventilator.	Range: 22–54	Not reported	A phenomenological approach	12 to 48 hours after discharge from the ICU
Granberg, Engberg, and Lundberg (1998), Sweden, n = 19	A general ICU	To describe and give a deeper insight into patients’ experiences and memory recall, both during and after their stay in the ICU.	Range: 25–82	Not reported	A qualitative hermeneutic approach according to Dahlberg and Gadamer	The first interview usually took place in the ward, between 6 and 10 days after ICU discharge. The second interview took place 4 to 8 weeks after the first interview

ICU= Intensive Care Unit; N = number; ARDS = Acute respiratory distress syndrome; COPD = chronic obstructive pulmonary disease.

In order to express the synthesis (phase 7), the authors summarized their findings, considered strengths and limitations, and reflected on how they, as reviewers, influenced the interpretative process and synthesis findings. All considerations are presented in the discussion section.

Trustworthiness

To enhance trustworthiness, we rigorously followed Noblit and Hare (1988) method. We ensured transparency concerning the outcomes of all steps (Appendices 2 and 3). Moreover, to promote thoroughness of the data analysis, all analyzing steps were performed at least by two researchers independently, and the final synthesis was performed in panel sessions with an interdisciplinary research group.

Results

Our meta-synthesis resulted in three lines of argument: 1) “recovery from critical illness starts from a situation in which patients experience the lived body as unable;” 2) “patients experience progress in recovery from critical illness when the lived body is empowered;” and 3) “recovery from critical illness results in a lived body changed for life.” These lines of arguments form the overarching concept based on 11 third-order constructs, which we formulated as different kinds of bodies: 1) an intolerable body; 2) an alienated body; 3) a powerless body; 4) a dependent body; 5) a restricted body; 6) a muted body; 7) a touched body; 8) a transforming body; 9) a rediscovering body; 10) an unhomelike body; and 11) a remembering body. The kinds of bodies, and lines of arguments, are related to stages in recovery (i.e. crisis, normalization, and post-discharge) as displayed in Table 2. However, one must not interpret this grouping as static stages, following a linear or sequential order. Recovery comes with moments of success and failure, with breakthrough moments and setbacks, with hope and despair. To clarify the variability, fluidity, and ambiguity of the different kinds of bodies, we will now describe them in detail.

Table 2. Results of line of argument synthesis with accompanying kinds of bodies.

Stages in recovery	Crisis	Normalization	Post-discharge
Kinds of bodies (Third-order constructs)	An intolerable body	A touched body	An unhomelike body
	An alienated body	A transforming body	A remembering body
	A powerless body	A rediscovering body
	A dependent body
	A restricted body
	A muted body
Lines of argument	Recovery from critical illness starts from a situation in which patients experience the lived body as unable	Patients experience progress in recovery from critical illness when the lived body is empowered	Recovery from critical illness results in a lived body changed for life

An intolerable body

During ICU stay, patients suffered from pain, difficulty sleeping, breathlessness and inability to move. Moreover, patients described a typical nausea that came with loss of appetite, which brought a desire to be left alone and not disturbed (Mylén, Nilsson, and Berterö, 2016). When the suffering was not alleviated, this made patients take on “a waiting position,” in which they had to tolerate and endure the situation (Holm and Dreyer, 2017).

Many distressing experiences were caused by technological applications. Patients were sometimes “totally unaware” (Johnson, St John, and Moyle, 2006) of the technology, and other times irritated, or annoyed, by its presence. Its presence in itself was a sign of sickness and vulnerability “am I that ill?” (Granberg, Engberg, and Lundberg, 1998). Mechanical ventilation was experienced as especially discomforting. It gave a continuous strain on the body. The tube was perceived as “a devil in the throat” (Alexandersen et al., 2019), which came with a sense of “oppression in the neck” (Albanesi et al., 2022). The mechanical ventilation came with feelings of breathlessness, or difficulty getting enough air. Having a tube was also associated with an overwhelming feeling of thirst, or a dry mouth. Moreover, airway suctioning to get rid of excretions and mucus brought on “a sense of suffocation” (Tembo, Parker, and Higgins, 2012). Venous lines and needles were considered “fishing-hooks” (Granberg, Engberg, and Lundberg, 1998), which were painful, and resulted in numb hands.

I can’t bear the thought of having a sore mouth again … I get frightened that it will because that’s the worst thing, not being able to breathe and not being able to swallow … (Foster, 2010)

ICU treatment could be so intrusive, or painful, that being in the body was experienced as too difficult, and patients dissociated from their bodies. Descriptions typically included a separation of the psyche, or the self, and the physical body, accompanied with an experience of “being somewhere else” (Papathanassoglou and Patiraki, 2003). Patients managed to dissociate from the body by shifting the focus from their body to somewhere outside, or to another dimension. They could also experience “observing the body from a distance” (Fredriksen, Talseth, and Svensson, 2008).

I had to create a zone or a space when they came to do this … I searched for a spot on the wall or a thought I could hold on to … and then they did what they had to do and finished with it. (Fredriksen, Talseth, and Svensson, 2008)

In this suffering, patients experienced that “their body had failed them” (Felten-Barentsz et al., 2018) and without seeing a future, their “hope for recovery was gone” (Alexandersen et al., 2019). Patients experienced despair, or “being on the brink of giving up” (Tingsvik, Hammarskjold, Martensson, and Henricson, 2018), and “saw death as an easier alternative” (Lykkegaard and Delmar, 2013).

I was mad at it (the body). And it didn’t help (laughing). I have to be honest, there was a time during my stay at the intensive care unit where I thought that if I needed an injection of some kind then couldn’t they just give me a proper dose and then I was gone (crying). (Lykkegaard and Delmar, 2013)

An alienated body

In the ICU, patients experienced an alienated body. The body felt different from normal, and patients experienced this as weird, strange, unfamiliar, or as “a body that was not theirs” (Da Cruz de Castro and Rebelo Botelho, 2017). Patients found it “incomprehensible” (Almerud, Alapack, Fridlund, and Ekebergh, 2007) how the body had changed during their coma and critical illness. Because of fatigue, weakness, and reduced capacities to move, patients experienced “lack of control” (Da Cruz de Castro and Rebelo Botelho, 2017; Fredriksen, Talseth, and Svensson, 2008; Locsin and Kongsuwan, 2013), and their “routines interrupted” (Da Cruz de Castro and Rebelo Botelho, 2017). The body was seen as “disobedient” (Palesjö, Nordgren, and Asp, 2015) which was frightening. Activities that normally were “matters of course suddenly needed consideration” (Lykkegaard and Delmar, 2013).

I was laying there and I couldn’t lift my arm. I could not even operate the television remote.[…] A board with letters on it was given to me, but I couldn’t even point at the board. That was so weird. I never realized lying in bed and being held in a coma would make you this weak. (Felten-Barentsz et al., 2018)

Not only the weakness and inability to move increased the alienation, but, also, the altered sensations, which were described as a “feeling of emptiness” (Palesjö, Nordgren, and Asp, 2015). This was linked to being bedridden, and being horizontal in bed, which affected normal orientation and “spatial comprehension” (Mylén, Nilsson, and Berterö, 2016). Moreover, patients mentioned a distorted body perception, or altered body image, with the body taking “strange shapes” (Papathanassoglou and Patiraki, 2003).

I felt swollen, huge and very heavy … once they moved me and I felt they were plucking a whole house out … My fingers felt enormous and stiff like gas pipes … (Papathanassoglou and Patiraki, 2003)

ICU technology seemed to add to the alienated body, and the experience of a “freakish body” (Locsin and Kongsuwan, 2013). Invasive treatment and techniques were experienced as “foreign” (Da Cruz de Castro and Rebelo Botelho, 2017; Holm and Dreyer, 2017; Johnson, St John, and Moyle, 2006; Tembo, Parker, and Higgins, 2012), and as the body being “invaded” (Da Cruz de Castro and Rebelo Botelho, 2017; Storli, Lindseth, and Asplund, 2007) which represented a “violation of the body” (Storli, Lindseth, and Asplund, 2007).

A powerless body

Patients in the ICU experienced a powerless body, which could entail different meanings. First patients felt that they had literally no power. There was no strength, no muscles to perform physical movement. Patients did not have the power to make the body do what they intended to, the body did not respond in the normal way.

I was caught in. a strange experience. no power in my torso. I was not able to rise or anything. I wanted a cup of coffee … I saw the cup, but I was not capable of reaching it! They had to help me. (Alexandersen et al., 2019)

Patients typically said “I could not do anything” (Lykkegaard and Delmar, 2013) or “I could do nothing”. These expressions can be taken literally but also figuratively. Patients were in a powerless state, “a state of inability” (Stayt, Seers, and Tutton, 2015). Patients used metaphors like “I looked like a plant” (Da Cruz de Castro and Rebelo Botelho, 2017; Karlsson and Forsberg, 2008) or “I felt like an infant, unable to walk or talk” (Fredriksen and Svensson, 2010). Their poor condition, their fatigue, their lack of energy, their nausea, pain, and dizziness made patients feel passive, or “taken over by others” (Wang, Zhang, Li, and Wang, 2009). This state was also called a state of helplessness, a state of disempowerment, vulnerability, and fragility.

But there was nothing to disturb me, nobody asked me to even think, or do anything at all, nothing … no demands whatsoever. I didn’t need to eat, breathe or even shit. There was absolutely nothing that I had to do. And when you have nothing to do, you have a lot of time on your hands. (Karlsson and Forsberg, 2008)

The third meaning of a powerless body relates to the “power given to the caregiver” (Almerud, Alapack, Fridlund, and Ekebergh, 2007) and a “lack of agency” (Stayt, Seers, and Tutton, 2015). The caregivers decided when the patient was washed, received meals, and was allowed to have visitors. Patients had a selfcare deficit, and were in “a waiting position” (Alguindy, Mohamed, and Gado, 2014; Da Cruz de Castro and Rebelo Botelho, 2017; Holm and Dreyer, 2017; Sheen and Oates, 2005). Patients had lost the potential for action, and lacked opportunities to act. They experienced loss of control over their body and over their life. Especially, when they were unable to communicate, they could not enact choice. It seemed to patients that they were “not entitled to say ‘no’,” or make demands of the care delivered.

Powerlessness was also evoked by the ICU technology. Patients felt bound and controlled by technology, to which there was an “unspoken underlying acceptance” (Stayt, Seers, and Tutton, 2015). The technology was seen as very important, and seemed to dictate clinical decisions, such as whether patients could leave their beds.

You have got to do as you are told because they just saved your life//They have got you plugged to machines and it is in their hands. (Tembo, Parker, and Higgins, 2012)

A dependent body

Patients in the ICU experienced a dependent body when they needed assistance from others, staff, or next of kin, to have their most elementary human needs met. Patients were typically used to being self-sufficient, and had trouble accepting help from others. It confronted them with their fragility and dependence.

It was really unpleasant to receive care at first. Anyone would react to that, because it’s not normal. But then you understand it’s necessary, you can’t do it yourself. And then somebody else has got to do it. In the end you appreciate it a lot. (Moen and Nåden, 2015)

The technical devices used in the ICU also made patients feel dependent. Paradoxical experiences were described, with technology being both distressing and providing a sense of comfort and safety. The technology did not only save patients’ life, but also made patients feel dependent and fearful.

When I woke up I had the tube down my throat and I had to depend on the [ventilator] and all the drips and tubes for my very life. It was terrifying at first, because I couldn’t help thinking: ‘What if something goes wrong with one of these machines, and nobody knows? After all, machinery is not infallible, is it? I tried so hard not to panic too much, but your whole life seems to lie in balance in the hand of a bit of machinery. (Johnson, St John, and Moyle, 2006)

An important element of the technology used in the ICU are monitoring devices. Being an object of observation could make patients feel marginalized, objectified, and humiliated. They could experience a “submission of the physical body,” and even “subjected to rituals of power” (Almerud, Alapack, Fridlund, and Ekebergh, 2007).

I felt cared for but it did seem impersonal at times. well they did examine me but I felt they were more interested in what the machines were telling them. I felt just separated from it. (Stayt, Seers, and Tutton, 2015)

The way in which care was experienced strongly related to the attitude, behavior, and tone setting of the professionals. Receiving care was experienced as “degrading” (Lykkegaard and Delmar, 2013; Moen and Nåden, 2015; Torheim and Kvangarsnes, 2014) and “a sign of weakness” (Lykkegaard and Delmar, 2013). Through uncaring actions, cold impersonal care or “superficial nursing” patients experienced a lack of empathy, and felt invisible and neglected. This made patients feel like “being in a vacuum”, or “being in a void” (Fredriksen, Talseth, and Svensson, 2008).

Despite their limited possibilities to act, patients fought to regain power and independence. Patients sought for connection and contact with their caregivers, and appreciated caring attentiveness. Patients typically wished to cooperate and contribute in the care process or, if possible, even be in charge. In the vulnerable and helpless situation, every small option to participate in care made great difference to patients’ sense of autonomy.

Then I asked them to give me one of the long syringes and fill it with water and rest it on my shoulder or chest so that I could push some water through the tube and wet my mouth. (Fredriksen, Talseth, and Svensson, 2008)

Patients could accept and bear the situation easier when they were met with respect and openness, enabling them to grow trust. “Trust means handing over one’s body and being confident that somebody will care for it” (Olausson, Lindahl, and Ekebergh, 2013).

A restricted body

Patients in the ICU experienced their body as restricted, restrained, trapped, or imprisoned. The restricted body could have different meanings. First, it could mean that patients felt “locked in a position in life they might not get out of” (Fredriksen, Talseth, and Svensson, 2008), where they had lost control, which increased their sense of dependency.

You are restrained, you can’t move. You can’t go to the bathroom … you just lie there in your bed. (Almerud, Alapack, Fridlund, and Ekebergh, 2007)

Second, it could mean that patients were not able to move, immobilized, or bedridden. This came from sedation, weakness, tiredness, heaviness in the body, bodily constraints, or was due to restrictions related to technical equipment. Patients in the ICU were connected with tubes, lines, catheters, and cables and wires to machines, apparatuses, and monitors. ICU equipment was restrictive in its nature, and forced patients to lie still. They wanted to be a good patient, not disturbing the caregivers. They feared moving or changing position, because they did not want to cause disconnection, resulting in alarms.

Tubes and lines all over me, in my arms and legs, forcing me to lie still, they also had lines in my stomach so it was impossible for me to lie on my side. I felt bound and controlled by the equipment, which was both alien and noisy. (Granberg, Engberg, and Lundberg, 1998)

Third, when patients had physical restraints, they “felt trapped,” or “tied up.” This was a scary, frustrating experience, which was also felt as extreme violence. Patients were locked in a position and yearned to leave or escape the situation into freedom.

I wasn’t able to do my movement, because I was tied to the bed and was like restrained, so I remained still. (Alguindy, Mohamed, and Gado, 2014)

Last, the feeling of being trapped or imprisoned could, also, come from the inability to speak or communicate, or was even linked to the endotracheal tube itself (Tembo, Higgins, and Parker, 2015; Tembo, Parker, and Higgins, 2012).

But that tube in my throat that was shocking. I can still feel it at the back of my throat although it’s not there now, I could still feel it there, but even just the thought of it … I couldn’t talk and I couldn’t move … they had tied my arms to the bed … It was like a prison very scary. (Tembo, Higgins, and Parker, 2015)

A muted body

Patients’ inability to communicate, and interact, with staff and their next of kin made them experience a muted body. Mechanically ventilated patients were not able to speak, they made efforts to speak, but did not hear sounds. Patients could not express themselves, could not draw people’s attention, and could not inform staff about their pain, or their need for necessary care. Patients could not ask questions about what was going on. This came with feelings of anxiety, powerlessness, helplessness, anger, and frustration, but also with feelings of isolation.

What I thought was worst was that I couldn’t talk when I had that plug in my throat, when I hadn’t got the speaking valve yet. I thought that was horrible. For instance, my legs hurt a lot, and especially when they were going to turn me around, some of them were quite heavy-handed. And it was painful. So getting that message through was difficult, I thought. (Moen and Nåden, 2015)

Patients searched for alternative modes of communication. Gestures, incomprehensible sounds, and writing were used to attract attention and to express themselves. Writing could help to bring across the message, however, due to weakness and incoordination, patients were not capable of producing readable writing.

I couldn’t control my writing which increased my frustration and I can remember throwing it away, across the ward I think … (Foster, 2010)

Olausson, Lindahl, and Ekebergh (2013) wrote about a paradoxical relationship between voice and body: “The body is speaking a language of pain, balancing between wondering and hope, but at the same time is in a state of external silence.”

A touched body

The way in which patients were touched strongly impacted their experiences. Patients felt violated when caregivers were heavy-handed, or applied transgressive touch, when they were forced to participate against their will, or when they were patronized. Patients could sense when healthcare professionals were indifferent, and felt “treated instrumentally” (Fredriksen, Talseth, and Svensson, 2008), being reduced to the status of organs, to a “biological unit” (Almerud, Alapack, Fridlund, and Ekebergh, 2007) or “just a body” (Lykkegaard and Delmar, 2015).

It was very transgressive when they touched me all the time. A lot of different people. No one, or maybe they did, but I didn’t feel that anybody considered me as a person. It was just a body lying there that they had to get going again. And that was also fine because it meant that I survived but... (Lykkegaard and Delmar, 2015)

In a caring relationship, patients experienced touch as comforting, calming, and relaxing. Being touched made patients aware of the physical presence of others, which helped them to feel safe and less alone. It felt good to patients when they experienced others taking care for them in washing, bathing, or smoothing their hair.

One of the things that made me feel the best was when the nurse came in and, uh, she washed my hands, she washed my face, she washed my feet, she held me. (Ballard et al., 2006)

Patients experienced comfort and wellbeing when they received caring attention, for instance, when professionals or next of kin rubbed their head, or stroked their hands, or gave “encouraging pats on the back” (Mylén, Nilsson, and Berterö, 2016). Within the high technology environment of the ICU, touch “reminded patients of their humanness” (Almerud, Alapack, Fridlund, and Ekebergh, 2007). It made them feel more “alive” (Henricson, Segesten, Berglund, and Määttä, 2009) or experiencing “harmony in the body” (Henricson, Segesten, Berglund, and Määttä, 2009).

Things that I really appreciated were when somebody came and took my hand just like that. You don’t think you can make it without that contact. It’s actually more important than the respirator. It gives you that warmth from another human being, the closeness, and it’s of crucial importance I think. (Karlsson and Forsberg, 2008)

Moreover, when patients were in the zone between sleep and wakefulness, bodily contact helped them to perceive the body and maintain contact with reality.

It was so nice to be touched by someone who cared. If I was having an awful dream I would instantly feel safe if someone came up and just reminded me that they were there. I didn’t care if it was by voice or touch. Just as long as I knew I wasn’t alone. (Sheen and Oates, 2005)

Patients felt respected when they were confirmed as human beings, when their autonomy was acknowledged, and professionals did not do things without asking first. Patients valued a judicious approach, with the caregivers not showing disapproving signals or signs of disgust when caring for them. When patients experienced a holistic approach and interpersonal interaction, this enabled recovery and a feeling of being empowered.

It promotes dignity. to be praised for what little you can do. Even if it’s not much, it can help your confidence. Because my confidence wasn’t sky-high, to put it like that. I felt small and helpless, I really did. (Moen and Nåden, 2015)

A transforming body

After surviving a period of critical illness, patients experienced a transforming body. Patients were aware that they lived through a period with a very serious disease, and that “their life hung by a thread” (Da Cruz de Castro and Rebelo Botelho, 2017), which emphasized the existential nature of being critically ill. Survival meant a lot for patients, and they felt that they went through spiritual development, and gained new perspectives on life. They spoke of personal transformation, rebirth, feeling like a new-born, with joy and awe for the wonder of life. This came with power and “will to get back to life” (Fredriksen, Talseth, and Svensson, 2008).

I felt really happy that I could come back to life again; I felt very well, much better; I felt strength in my body; I wanted to live. (Del Barrio et al., 2004)

I felt like being reborn again after I died. Like passing the worst point, then (life) got better and better. These technologies are life-giving. (Locsin and Kongsuwan, 2013)

In this transformation, ICU technology also played a role. Patients could experience technology as a source of security, a necessity for one’s survival. When technology was removed patients experienced anxiety again, but at the same time the removal of technologies represented the recovery trajectory.

… so as each drip disappeared and they took off the things from my leg I knew it meant that I could do more for myself. (Stayt, Seers, and Tutton, 2015)

A re-discovering body

In recovery, patients experience a re-discovering body or reclaiming of the body. Minor changes to body, strength, and movement were experienced as hopeful developments. Specifically, the ability to sit up and “being removed from the horizontal position” (Fredriksen, Talseth, and Svensson, 2008; Johansson, Bergbom, and Lindahl, 2012; Karlsson, Bergbom, and Forsberg, 2012) was experienced as a huge improvement.

It was almost the biggest thing that happened to me when they helped me get up in that chair, they supported me … to that chair that was there and everything seemed upside down … only so that I could sit and see what was happening around me … and it was almost … although I didn’t have any strength … the arms were just lying there and the feet were propped up … yet still I felt that now … something was happening which made … that thing with the chair is one of the greatest things that have happened to me actually. (Fredriksen, Talseth, and Svensson, 2008)

Assisted movements of patients’ arms, legs, and head could lead to patients experiencing a regaining of control over their bodies. Moreover, being able to engage in or initiate activities, for instance, taking care of personal hygiene, made patients experience a sense of normalization and self-confidence. Being able to help and assist were interpreted as signs of improvement or “steps in the right direction” (Tingsvik, Hammarskjold, Martensson, and Henricson, 2018). Through exercise and supported mobilization, patients were able to re-discover the body, or “get back their body” (Fredriksen, Talseth, and Svensson, 2008). This “normalization” (Mylén, Nilsson, and Berterö, 2016) and increased ability to move was called “building muscles” (Strahan and Brown, 2005), “discovering body resources” (Fredriksen, Talseth, and Svensson, 2008) or “gaining experience based knowledge” (Fredriksen, Talseth, and Svensson, 2008).

I didn’t know how to walk anymore. I found that incredible and now it’s coming back again. The muscles are starting to build up in my legs again. (Strahan and Brown, 2005)

Through progression, patients regained confidence in the body, regained control, and got more “grip on their life” (Fredriksen, Talseth, and Svensson, 2008). Patients could actively contribute to their recovery. The ability to move, and achieving mobilizing milestones, could mean that patients experienced “a turning point” (Felten-Barentsz et al., 2018; Fredriksen, Talseth, and Svensson, 2008).

the nurses and doctors told me I would recover, but I did not believe them. Whenever I exercised in the water I felt that recovery was possible. (Felten-Barentsz et al., 2018)

A new path opened up, allowing patients to look forward, and have hope for recovery. In the discovery of their bodily abilities, patients dared to set goals and “began to have a future” (Almerud, Alapack, Fridlund, and Ekebergh, 2007). This came with strong motivation and self-confidence, as it stood for life opportunities. Being active, achieving tasks, and walking were experienced to be significant and meaningful. Patients wanted to get the body going, and wanted to work for it. They experienced that they had only one body which they had to care for.

I am encouraged to get up and go for a walk every hour and I am sticking to that as much as possible … My legs are strengthening up again. (Strahan and Brown, 2005)

An unhomelike body

Patients were grateful for surviving the critical illness and being able to return home. However, at home, they were confronted with their disabled post-ICU self. They had to learn to live in and become familiar with their: “changed body” (Ellingsen et al., 2021); “uncanny body” (Ellingsen et al., 2021; Palesjö, Nordgren, and Asp, 2015; Vester, Holm, and Dreyer, 2021); or “unhomelike body” (Ellingsen et al., 2021; Palesjö, Nordgren, and Asp, 2015). Patients wanted to feel normal again, and wanted to “return to their ordinary life” (Palesjö, Nordgren, and Asp, 2015) but they had to let go of life as it was, and reconcile with the new body and the new life, into “an altered way of existence” (Tembo, Higgins, and Parker, 2015).

I thought I could do the things I did before. I was so surprised. My body felt so different. (Vester, Holm, and Dreyer, 2021)

… I suppose it’s safe to say that I’m not the same person as before. (Karlsson and Forsberg, 2008)

The patients’ bodies had visible and invisible marks of the critical illness, reminding them of their ICU period. Their bodies were weak and fragile. They experienced pain, fatigue, anxiety, and an inability to concentrate. They were uncertain how the body would react. Their bodily senses were easily overstimulated by the environment. Their voices were altered or lost. Moreover, patients experienced dissatisfaction with their bodily appearance.

what … affects me most is my voice, cause I can’t talk like I used to … sometimes people can’t hear me, and that makes it difficult especially on the phone. (Umberger and Thomas, 2019)

The bodily changes hindered their previous roles and actions. These problems made patients struggle to regain a sense of their previous self or identity.

I used to do everything, the household, the girls … Things I couldn’t do while in hospital. My husband still takes care of everything, leaving me wondering: What am I in this family? (Vester, Holm, and Dreyer, 2021)

An extra difficulty to patients was that they were seen as “healthy at discharge” (Vester, Holm, and Dreyer, 2021). However, with the ICU experience, patients felt that life could no longer be taken for granted. Even years after hospital discharge, patients still perceived their body as vulnerable and unpredictable. Patients experienced insufficient follow-up, lacked help in their “existential recovery” (Palesjö, Nordgren, and Asp, 2015), and felt “being left in the open” (Ellingsen et al., 2021).

My friends kept commenting on progress in my physical ability. For me, I’ve felt stuck in a long, endless struggle with other ongoing problems. (Vester, Holm, and Dreyer, 2021)

A remembering body

In three studies Storli and Lind (2009) Storli, Lindseth, and Asplund (2007) and Storli, Lindseth, and Asplund (2008) described patients experiencing memories stored, or rooted, in the body. Memories manifested as bodily experiences through bodily expressions of aversion. They experienced feelings of suffocation, tightness in the chest, or chills down their back when certain memories were triggered.

I always get a tightness in my chest when the taxi approaches the hospital. (Storli, Lindseth, and Asplund, 2008)

Their ICU stay could represent frightening experiences, for instance, being sexually abused, while being held captive in a hotel room (Storli and Lind, 2009).

It‘s written here that they put in a tube in my rectum, when I had such a bad case of diarrhoea … That’s one of the feelings I recall … that something like that was done to me. […] But all this happened in the hotel room where I was kept captive … (Storli and Lind, 2009)

Patients benefited from returning to the ICU, for instance, in a follow-up visit, and “feel the room” (Storli and Lind, 2009). As the body was taken back to the previous situation, deeply stored bodily memories could be awakened, and made comprehensible, so that bodily experiences could become meaningful and sorted out. This could bring “harmony felt in the body” (Storli and Lind, 2009).

I got this feeling of being held down, pressed down, that my mother says is maybe real, because I was so restless for a time there, before I really regained consciousness. I’ve had that feeling with me, but it has been very diffuse. Now I can sort of place it. (Storli, Lindseth, and Asplund, 2008)

Discussion

In this meta-ethnography, we synthesized the lived body experiences from 45 phenomenological studies. We found that lived body experiences during ICU stay and in recovery from critical illness can be characterized with three lines of arguments: “recovery from critical illness starts from a situation in which patients experience the lived body as unable,” “patients experience progress in recovery from critical illness when the lived body is empowered,” and “recovery from critical illness results in a lived body changed for life.” These lines of arguments are the overarching concepts of the third-order constructs, or kinds of bodies that we found.

According to Merleau-Ponty (2013) we are a body subject, with motor intentionality corresponding to a practical “I can” or “I cannot.” Based on our synthesis, we state in our first line of argument that “recovery from critical illness starts from a situation in which patients experience the lived body as unable.” In this inability, we recognize the “I cannot” from Merleau-Ponty (2013). The motor intentionality as pre-reflective condition for acting potential is limited resulting in critically ill patients having very limited grip on their world or life. The lack of strength and movement, resulting in disempowerment, and loss of control, in the ICU, were previously associated with the ideas of Merleau-Ponty (Almerud, Alapack, Fridlund, and Ekebergh, 2007; Fredriksen, Talseth, and Svensson, 2008).

The care delivered in the ICU is inseparable from the technology being used. Our findings include paradoxical experiences concerning the ICU technology. Patients are supported (i.e. they are able to breathe due to mechanical ventilation) and at the same time limited (i.e. they are unable to move their arms because it would cause an alarm). It is evident that the lived body experiences during ICU stay are strongly mediated by technology. Mediation means that the appearance of, and relation with, reality is changed, distorted, and alienated (Ihde, 1990). The technology makes that the world appears differently to the patients during ICU stay, and influences capabilities and behavior.

Our findings have important clinical implications. We are now able to answer questions such as: “how can I help these patients experiencing a lived body that is unable and mediated by technology?” or in other words: “how can I help patients experiencing ‘I cannot’ reach a situation in which they experience ‘I can’?” The answer lies in our second line of argument: “patients experience progress in recovery from critical illness when the lived body is empowered.” Empowering the lived body means for healthcare professionals to support the touched body, the transforming body, and the rediscovering body. Our line of argument relates to findings in the recent study of Söderberg et al. (2022) entitled “from fear to fight,” which also describes an empowerment. Moreover, we see overlap with studies advocating bringing patients in an active awake state, allowing them to interact and be involved, increasing their sense of agency (Laerkner, Egerod, Olesen, and Hansen, 2017; Wermström, Ryrlén, and Axelsson, 2017). Empowering the lived body of patients during ICU stay is an important step toward recovery, and can be supported by healthcare professionals.

Recovery from critical illness starts early, and proceeds long after patients are discharged from the ICU and from the hospital. Patients fight to gain back their old self. However, full recovery is hardly possible. Therefore, we state in our third line of argument: “recovery from critical illness results in a lived body changed for life.” The body stays unhomelike to some extent, a finding that is also described as the concept of unhomelike-being-in the world by philosopher Fredrik Svenaeus (2011). Patients seem recovered, however, they can never return to the life they had before. Therefore, we agree with Ellingsen et al. (2021) that patients surviving critical illness become part of the remission society, a concept of Arthur Frank (2013). The memories of being critically ill stay rooted in the body. Patients should be helped to place their experiences in context, so they can start thinking of acceptance, and come to terms with their ’new’ post-ICU self (Kean et al., 2021).

During the peer-review process for publication, an update of the systematic literature search was requested. The updated search included studies up to June 29, 2023, and yielded seven relevant studies. Three of the studies collected data in the general ICU population (Flinterud, Moi, Gjengedal, and Ellingsen, 2022; Lehmkuhl et al., 2023; Tsai et al., 2021); and four studies collected data in patients who were admitted to the ICU with COVID-19 (Demir and Öz H, 2022; Engström et al., 2022; Køster, Meyhoff, and Andersen, 2023; van Oorsouw et al., 2022). In accordance with the findings of this meta-synthesis these studies described a restricted body calling it: a “trapped body” (Tsai et al., 2021) or an “imprisoned body” (Flinterud, Moi, Gjengedal, and Ellingsen, 2022); “a powerless and dependent body” (Demir and Öz H, 2022; Engström et al., 2022; Køster, Meyhoff, and Andersen, 2023; Lehmkuhl et al., 2023); and “a touched body” (Lehmkuhl et al., 2023). New was the reporting of “an isolated body,” expressed by patients admitted to the ICU with COVID-19 (Demir and Öz H, 2022; Engström et al., 2022; Køster, Meyhoff, and Andersen, 2023; van Oorsouw et al., 2022). It seems important for healthcare professionals to realize that isolation precautions have an impact on how patients experience their body.

Clinical relevance

Based on our findings, we distillate several practical implications for physical therapists, and other healthcare professionals, working with patients during ICU stay, and in recovery from critical illness. When treating these patients, one should be aware of the different ways in which patients can experience their body. Reading our synthesized findings can help to create awareness and empathy for patients’ lived body experiences. As lived body experiences are ambiguous, and constantly shifting, we encourage healthcare professionals to be curious and sensitive to what the individual patient before them might experience. Using questions like: “how do you feel?” or “how does your body feel?” should be part of the clinical routine. A trained and empathic listener will hear many lived body experiences, and will know how to follow up on these expressions. When physical therapists make room for these conversations, they may assist patients to re-discover their body and build a trusting relationship.

Moreover, we found that patients make progress in ICU recovery through empowering actions. When a patient seems uncooperative, the healthcare professional should not simply conclude that the patient is not awake or conscious enough to follow up on commands. When the lived body is unable, “simple mechanical” commands are often misplaced. In addition to a cognitive approach in the form of telling patients what to do, we recommend bringing patients in situations where they experience their pre-reflective embodied abilities and awaken the non-cognitive body knowledge. In the words of Merleau-Ponty we advocate to bring patients in a situation where they experience “I can” instead of “I cannot.”

Knowing that patients’ lived body in the long-term can be changed for life, physical therapists should be cautious not to give false hope. Patients will be helped with a realistic prognosis. Acknowledging that patients may feel unhomelike might help patients feel heard, and help verbalize their feelings to their relatives. In line with Kean et al. (2021) physical therapists working with post-discharge patients should have the goal to “move on” and to regain a new sense of normalcy.

Strengths and weaknesses

To promote thoroughness of the data analysis, all analyzing steps were performed by two researchers independently, and the final synthesis was performed in panel sessions with an interdisciplinary research group. Herewith, all authors were familiar with the data, and were able to critically reflect on the analysis. Moreover, by including a lines-of-argument synthesis, we provided for an overarching explanation of patients’ lived body experiences, and we were able to formulate clear implications for healthcare professionals.

In this systematic review and meta-ethnographic synthesis, we included 45 studies, which is a large sample for a meta-ethnography. Including such a large sample of studies might lead to superficial analysis and synthesis. To ensure sufficient depth of analysis, we reported first-order, second-order, third-order, and lines of argument. For thorough analysis, and to avoid an even larger sample, we limited ourselves to including only phenomenological studies. Knowing that the collection of lived body experiences among critically ill patients can be very challenging (Rier, 2000; Uotinen, 2011) other qualitative approaches, for instance studies using: general qualitative approaches (Hofhuis et al., 2008; Jensen et al., 2017; Ringdal et al., 2018; Samuelson, 2011; Söderberg et al., 2022); grounded theory studies (Corner, Murray, and Brett, 2019; Kang and Jeong, 2018; Vogel et al., 2021); ethnography studies (Laerkner et al., 2019); or auto-ethnography studies (Bowers, 2004; Egerod et al., 2020; Rier, 2000; Uotinen, 2011) might have enriched our findings.

Suggestions for further research

In this study, we found that patients’ lived body experiences were related to stages in recovery: crisis, normalization, and post-discharge. There is a large body of qualitative research studying patient experiences during ICU stay (Carruthers, Gomersall, and Astin, 2018; Cutler, Hayter, and Ryan, 2013; Danielis, Povoli, Mattiussi, and Palese, 2020; MaartmannMoe, Solberg, Larsen, and Steindal, 2021; Topçu, Ecevit Alpar, Gülseven, and Kebapçı, 2017) and around the transfer from the ICU to the nursing ward (Cullinane and Plowright, 2013; Field, Prinjha, and Rowan, 2008; Forsberg, Lindgren, and Å, 2011; Herling et al., 2020; Karlsson, Eriksson, Lindahl, and Fridh, 2019; Lee, Park, and Palese, 2021; Major et al., 2019). However, experiences in the post-discharge stage, for instance, in rehabilitation centers or during recovery at home, are less available. In order to give guidance to physical therapists working with patients recovering from critical illness in these settings, more qualitative research should be performed in patients at long-term follow-up.

Conclusions

Patients’ lived body experiences during ICU stay and in recovery from critical illness have richly been described in phenomenological studies. Based on a systematic review and thorough meta-ethnographic synthesizes, we provide a detailed insight into the different situations and kinds of bodies that patients can experience. These insights bear important clinical implications for physical therapists and other healthcare professionals supporting patients in early mobilization and ICU recovery. Healthcare professionals should empathize with patients’ feeling that their lived body is unable. Subsequently, healthcare professionals should empower the patients’ lived body, by creating therapeutic situations in which patients experience that they are able. Finally, knowing that the patients’ lived body is changed for life, patients recovering from critical illness should be helped to come to terms with their ’new’ self.

Acknowledgments

We thank OnYing Chan, information specialist at the Radboudumc, for her contribution to the search strategy.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.

Appendices Appendix 1.

Search Strategy

Table

	Criteria	Results
S	Sampling strategy	Comprehensive, Boolean search strategy
T	Types of studies	Qualitative research, fully reported
A	Approaches	Systematic electronic search, hand-searching, snowball-searching reference list
R	Range of years	No date limits (Search 1-11-2021 till 12-11-2021)
L	Limits	Language (English/Dutch), publication type (peer reviewed journal)
I	Inclusion and exclusions	Inclusion criteria: - Study includes patient experiences - Study includes bodily or embodied experiences - Study included experiences during ICU stay or in recovery from critical illness - Adult patients (aged 18 or over) - Study used a phenomenological approach Exclusion criteria: - Palliative care - Article type (e.g. abstract congress, thesis, and commentary) - Full text not available - Ineligible language
T	Terms used	Critical Care [MeSH], early goal-directed therapy [MeSH], Intensive Care Units [MeSH], Burn Units [MeSH], Coronary Care Units [MeSH], Recovery Room [MeSH], Respiratory Care Units [MeSH] Critical Illness [MeSH], respiratory distress syndrome, adult [MeSH] Airway Management [MeSH], Extracorporeal Membrane Oxygenation [MeSH], Critical Care Nursing [MeSH], acute ill*, acute respiratory failure, acutely ill, ARDS, artificial respiration, Critical Care, critical ill, critically ill, ECLS, ECMO, extracorporeal life support, Extracorporeal Membrane Oxygenation, ICU, ICUAW, intensive care, intubat*, mechanical respiration, mechanical ventilat*, mechanically ventilat*, medium care, PICS, respirator weaning, respiratory care unit*, respiratory distress syndrome*, ventilator weaning, critical care/psychology [MeSH], critical illness/psychology [MeSH] critical illness/rehabilitation [MeSH], survivors/psychology [MeSH], Life Change Events [MeSH], Self Concept [MeSH], Spirituality[MeSH], qualitative [All Fields], qualitatively [All Fields], qualitatives [All Fields], Grounded Theory [MeSH], Qualitative Research [MeSH]), Interviews as Topic [MeSH], Nursing Methodology Research [MeSH Terms], Focus Groups [MeSH], Narration”[MeSH Terms], Jungian Theory [MeSH] essential meaning, Experience, Experiences, lived experience, phenomenolog*, case stud*, ethnograph, focus group*, Grounded Theory, hermeneutic*, heuristic*, interview*, Jungian Theory, life-world, narrat*, Observation
E	Electronic resources	Pubmed/Medline, EMBASE, CINAHL, PsycINFO, Web of Science, Google Scholar

Appendix 2.

Methodological Quality Assessment using the Critical Appraisal Skills Programme (CASP) Checklist for Qualitative Research

Table

	CASP items
	A) Are the results valid?						B) What are the results?
Study	1. Aim	2. Methodology	3. Design	4. Recruitment	5. Data Collection	6. Relationship	7. Ethics	8. Data Analysis	9. Clear findings	10. Local value
Albanesi et al. (2022)	N	Y	Y	Y	Y	N	Y	Y	Y	Y
Vester, Holm, and Dreyer (2021)	Y	Y	Y	N	Y	N	Y	N	Y	Y
Lee, Park, and Palese (2021)	Y	N	Y	N	Y	Y	Y	Y	Y	Y
Ellingsen et al. (2021)	Y	Y	Y	N	Y	Y	N	N	Y	Y
Alexandersen et al. (2021)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Umberger and Thomas (2019)	Y	Y	Y	N	Y	Y	Y	Y	Y	Y
Alexandersen et al. (2019)	Y	Y	Y	N	Y	Y	Y	Y	Y	Y
Tingsvik, Hammarskjold, Martensson, and Henricson (2018)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Felten-Barentsz et al. (2018)	Y	Y	Y	Y	Y	N	N	N	Y	Y
Holm and Dreyer (2017)	Y	Y	Y	Y	Y	N	Y	N	Y	Y
Da Cruz de Castro and Rebelo Botelho (2017)	Y	Y	Y	N	Y	N	N	Y	N	Y
Mylén, Nilsson, and Berterö (2016)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Whitehorne, Gaudine, Meadus, and Solberg (2015)	Y	Y	Y	N	Y	N	N	N	Y	Y
Tembo, Higgins, and Parker (2015)	Y	Y	Y	N	Y	Y	N	N	Y	Y
Stayt, Seers, and Tutton (2015)	Y	Y	Y	N	Y	N	N	Y	Y	Y
Palesjö, Nordgren, and Asp (2015)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Lykkegaard and Delmar (2015)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Moen and Nåden (2015)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Torheim and Kvangarsnes (2014)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Alguindy, Mohamed, and Gado (2014)	Y	Y	Y	N	Y	N	Y	Y	N	Y
Olausson, Lindahl, and Ekebergh (2013)	N	Y	Y	N	Y	N	N	Y	Y	Y
Lykkegaard and Delmar (2013)	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Locsin and Kongsuwan (2013)	Y	Y	Y	N	Y	N	Y	N	N	Y
Tembo, Parker, and Higgins (2012)	Y	Y	Y	N	Y	N	N	N	Y	Y
Karlsson, Bergbom, and Forsberg (2012)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Johansson, Bergbom, and Lindahl (2012)	Y	Y	Y	N	Y	N	N	Y	Y	Y
Cypress (2011)	Y	Y	Y	Y	Y	Y	N	Y	N	Y
Fredriksen and Svensson (2010)	Y	Y	Y	N	Y	N	N	Y	Y	Y
Foster (2010)	Y	Y	Y	Y	Y	N	Y	Y	N	Y
Wang, Zhang, Li, and Wang (2009)	Y	Y	Y	N	Y	N	N	N	Y	Y
Storli and Lind (2009)	Y	Y	Y	N	Y	Y	N	Y	Y	Y
Henricson, Segesten, Berglund, and Määttä (2009)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Storli, Lindseth, and Asplund (2008)	Y	Y	Y	N	Y	Y	N	Y	Y	Y
Karlsson and Forsberg (2008)	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Fredriksen, Talseth, and Svensson (2008)	Y	Y	Y	N	Y	N	N	Y	Y	Y
Storli, Lindseth, and Asplund (2007)	N	Y	Y	Y	Y	Y	Y	Y	Y	Y
Almerud, Alapack, Fridlund, and Ekebergh (2007)	N	Y	Y	N	Y	N	N	Y	Y	Y
Johnson, St John, and Moyle (2006)	Y	Y	Y	N	Y	N	N	N	Y	Y
Ballard et al. (2006)	Y	Y	Y	N	Y	N	Y	Y	Y	Y
Strahan and Brown (2005)	Y	Y	Y	N	Y	N	N	N	Y	Y
Sheen and Oates (2005)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Del Barrio et al. (2004)	Y	Y	Y	Y	Y	N	N	Y	N	Y
Papathanassoglou and Patiraki (2003)	Y	Y	Y	N	Y	N	N	Y	Y	Y
Jordan, van Rooyen, and Strümpher (2002)	Y	Y	Y	N	Y	Y	Y	N	Y	Y
Granberg, Engberg, and Lundberg (1998)	Y	Y	Y	N	Y	Y	N	Y	Y	Y
Y= Yes; N= No

Appendix 3.

Relating studies to each other

Detachment from the Body

Detachment from the body

Escaping from the body, having his soul elsewhere

The body as a separate entity

Dissociation from the body

Shift the focus from the body to somewhere outside

A medium with inner spatiality

An altered association between psyche and the physical body

Disorientation

Disembodiment

Unable to grasp what is happening

Being disrupted

Being in limbo

Losing one’s map and destination in life

A Changed Body

Changed body

An altered state

Altered body

Different body

altered bodily perception

Emptiness in the body

The body does not exist

Body image distortion

Alienated body

Feeling misplaced

Distorted perception of body and bodily sensations

Disrupted embodiment

An unfamiliar body

Feeling a stranger cared for by a stranger

Strangeness

Not recognizing the body

Not feeling the body

Loss of the usual and familiar body

Loss of the taken for granted body, which Heidegger referred to as “the-ready-to-hand”

A freakish body

Unhomelikeness

A disobedient body

A foreign body

A body in silence

A fragmented body

Feeling betrayed by the body

A body completely inert

A body not responding

Transformation of the body

A Powerless Body

I couldn’t do anything

I was paralyzed

Unable to move

Not being able to move

Not able to move arms and legs

Inability to move or express themselves

Unable to communicate

Being in a state of inability

Not being able to go to the toilet, poop in bed

Loss of control

Loss of function

To feel like floating

Traitorous body

Failing body

To feel like a vegetable

To feel like a little child

To feel like an infant unable to walk or talk

Feeling heavy like an elephant

Not knowing how to walk

Self-care deficit

Dysfunctional body

Powerlessness

Living in a bubble

Feelings of disconnection

A debilitated body

No sense of agency

Back to Reality

Return to reality

A sense of unreality

Coming back to life

Trying to get it straight

Hope related to life

Bodily contact makes it possible to maintain contact with reality

A Hopeless Body

Hopelessness

Giving in

Giving up

Capitulation

Being trapped in a black hole

Being locked in a position in life they might not get out of

Uncertainty

Resignation

Feeling dead inside

Feeling like being in de process of dying

Death as an easy alternative

Wanting to die

My useless body

Draining willpower

A body at a breaking point

The confrontation with dead

Dependability

Loss of control

Being out of control

No opportunity to act

Being forced to submit to the will of others

Dependency

Vulnerability

Feeling fragile

Reduced self-confidence

Depersonalization

No power

Powerless

Power given to the caregiver

The nurse is in charge

Impaired self-worth

Limited autonomy

To feel shamed

A sense of disempowerment

Helplessness

Being helpless

Yearning for independence

Loss of the known self

Degrading, your honor is at stake

No possibility to act

To feel like a child

Feeling left outside community

Experiencing a vulnerable body

Vulnerability

Feeling fragile

Low self-esteem

Inconvenience

Shyness

Illness or injury is a threat not only to the body but also to the person

A lack of agency

A lack of opportunity

A body devoid from its uniqueness

Being in a waiting position, having to tolerate and endure

Lacking strength

Lacking stability and balance in life

Fear, Insecurity

Being scared, being terrified

Panic

Anxiety

Fear

Frightening

Terrified

Existential crisis

A need for an existential sphere for the body and self

Insecurity

Distressing thoughts

An Imprisoned Body

Being captured

Being restricted

Being imprisoned

Being trapped

Feeling trapped

Being controlled

Being tied down

Being tied to the bed

Being bound and drowning

Being unable to move

Being restrained

Being constrained

Feeling limited

Feeling strained

Feeling locked up

Being caught

Being put in straps

Longing to be free

Wanting to contribute

Wishing to cooperate and be in charge

Confinement to the bed

Being pursued

Wanting to escape

Being kept to bed

A Suffering Body

Suffering

Discomfort

Physical discomfort

Being tortured

Dread

Terror

Grief

Pain

Thirst, mouth dryness

Panic

Tiredness, Fatigue

Choking (when suctioning)

suffocation

Dyspnoea, breathlessness

Seeking air, as if you were underwater

Weakness

Being weakened

Being stiff

Exhaustion

Sleep troubles, sleeplessness

Being hurt

Depression

Waiting

Technology

Technology attached to the body

Technology fixed to the body

Equipment attached to the body

An invaded body

A controlled body

Incomprehensible environment

Awkward situation

Trouble grasping what happens

Being wired

Being tethered

Vulnerability

Dependency

Chaos

Frustration

Fighting staff

Not being yourself

Just taking up space

Feeling like a biological unit

The tube as a foreign object invading the patient’s body

Being on MV: A strain on the body

Tube: “a devil in the throat”

A sense of security

Feeling threatened

An Objectified Body

Being objectified

Being monitored

Being scrutinized

Being marginalized

Infantilizing patient

Diminishing humanness

Feeling like a biological unit

Not feeling seen

Impersonal care

Feeling invisible

Feeling ignored

Feeling neglected

Feeling reduced to the status of organs, objects, or diagnoses.

Feeling ashamed

Being embarrassed

Being exposed

Being violated

Feelings of failure

Feeling disappointed with yourself

Feeling humiliated

Being degraded

Feeling upset

Feeling lost

To feel shut off

Not disturbing the nurse

Feeling degraded

An instrumentalized body

Feeling passive

Feeling taken over by the other or technology

A Subjected Body

Being subjected to rituals of power

The biological body as an object of observation, supervision, review and control

Being treated instrumentally

Being excluded from having any influence

Not disturbing staff

Pleasing staff/Being a good patient

Blaming oneself

Being in a vacuum

Being in a kind of void

Lack of demands

Lack of stimuli

Perceive lack of value

Being violated

Being denied

Being treated as an object

Being isolated

Being judged

Being punished

Being abandoned

Being forced

Being patronized

Superficial and heavy-handed nurse

No empathy

Complying with an unspoken set of rules

Intimacy is invaded by unraveling the body, surrendering to the professionals’ eyes and care

A Communicating Body

Inability to communicate

Non-verbal communication, gestures, writing

Being muted

Loneliness

Loss of control

Being voiceless

Having lost identity

The body is speaking a language of pain, balancing between wondering and hope but at the same time is in a state of external silence

An unreliable voice, verbal imprisonment

Feeling lost

Waiting to make a connection

Safety/Respect

Feeling safe

Human presence

Human touch

Human voice

Personal integrity

Nurses telling what they do

Nurses caring for you, spending time with you, and just being nice

Holistic approach

Being held by a nurse

Being holistically confirmed

Being connected to oneself

Being in harmony in one’s body

Becoming alive

Handing over one’s body in trust

The tone and touch of caring

Feeling homelike

Being met with respect

Being met with openness

Humbleness

Appreciation

Compassionate care

Bodily touch strengthened identity

Being able to move

The body feeling light

Relaxation

Actively contributing

Regaining confidence in the body

Accepting the situation

Accepting the ICU as an integral part of their lifeworld

Being involved in the care

Experience humanity and respectfulness

Vulnerable interactions

Family

Being attuned to loved ones

Not wanting to be seen

Feeling responsible for the family

Perceiving familiar touch

The conflict between proximity and distance to significant others

Feeling Reborn

Feeling strength

Wanting to live, a will to survive

Confident that life goes on

Feeling like a new-born or a baby during recovery

Feelings of rebirth, joy and awe to the wonder of life

Feeling reborn

Inner strength

Willpower

A Turning Point

Reclaiming life

Re-discovering the body

To experience a turning point

Experiencing a turning point

Stimulated self-efficacy

Regaining control

Regaining a sense of stability and balance

Having both feet firmly on the ground

To get a grip on life

To reach a turning point

Progress

Regaining control

Building muscle

Signs of progress provide confidence and hope

Experiencing relief

To trust

Being able to help

Experiencing hopeful signs of progress as the body was less debilitated

Routines restored

A transfer as sign of progress

A quest to find oneself

The road back to life

Overcoming obstacles

A Working Body

Goalsetting

Rehabilitation

To hope

To be encouraged

Being in the ward is a milestone in recovery

To be empowered

To be triggered

To have expectations

To find the body intact

To be in touch with one’s own body

To be motivated

To be trusted

To achieve

To want

To desire

To be reassured

To gain freedom

Building muscles

Believe in recovery

To shift the gaze outwards into a space and a future

To feel relief

To feel gratitude

Striving for control

To take care of yourself

Striving to regain the old me

Desire for normality

Striving to feel normal

Wanting to work, it’s part of identity

After Discharge

Feeling forgotten

Being discharged, being left in the open

Having to learn basic things all over again

Being grateful for surviving and not understanding why being depressed

Losing identity when not being able to work

Inability to participate in social roles and activities including hobbies and work

Unhomelike being-in-the-body

An alien body, uncanny body

Regaining familiarity and homelikeness

A vulnerable and unpredictable body

Disintegration of the lived body

Reclaiming the role in the family but being inhibited by fatigue and physical weakness

Slowly reintegrating with the family

To recover in an unfamiliar body

A New Self

Living beyond the “ringing bell”

Having to care for yourself in new and different ways

Preserving the self

Treading tentatively in a new world

Fight the battle for survival

Having the courage to meet the life that awaits them

Learning to live in the moment

Learning to live in a changed body

The body has both invisible and visible marks that are reminders of the critical condition

Overcome anxiousness and uncertainty

Existential recovery, learning to live with a changed body

Having lost previous life

Let go the old life, sacrifice life as it was and reconcile with the new body and life

The disabled post-ICU self

Struggle to regain a sense of their previous self/identity

Being born again

A new perspective on life

Life can no longer be taken for granted

A new understanding of oneself

A new orientation on life after critical illness

Redefining oneself

Memories in the Body

Memories in the body

Being on a journey

Being on a quest

To encounter one’s own expression

To feel the room