The patient experience of intensive care: A meta-synthesis of Nordic studies

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Abstract

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 2000–2013. 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 ICU-environment. 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 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.

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 2000–2013.

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 (1905–1981), whose thinking has been described as an avenue to understanding the creation of cognition (Løgstrup, 1995, Løgstrup, 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 reinterpret newer Nordic studies of the patient experience of intensive care to obtain a contemporary description of human suffering during life-threatening illness.

Section snippets

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).

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 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

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

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

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. All original studies have described and referred to approval by ethical committees or principles.

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