Millions of people across the world are admitted to intensive care units each year. This is expected to rise with increases in population and life expectancy. In tandem with this, the standard and capability of clinical care provided has improved significantly over the last three decades. An evolving body of evidence has confirmed that significant percentages of survivors are frequently and profoundly affected by their intensive care experience. Patients who would not have survived a critical health event 30 years ago now survive; with the concomitant rise of survivors the potential for developing emotional sequelae leading to chronic illness increases with only a few returning to pre-morbid life-styles. The cost therefore of survivorship in this population in financial and human terms, is significant.
Background
Major levels of physiological disturbance are apparent in ICU patients as they experience at least one, and frequently more body system/s failure that usually require invasive therapies to promote survival. Therapies often include deep sedation, ventilation and a variety of other invasive procedures, which in themselves are known to precipitate adverse physical and psychological consequences. As a result of these interventions, and in particular sedation, survivors experience an enforced disconnection from reality and are unable to reconcile their memories with what actually happened to them. This state can endure for weeks and even months in some instances. The consequences of this twilight existence and the associated invasive therapies have been likened by some patients to a torture-like existence. The experience of an ICU admission is clearly a stressful, potentially traumatic event for survivors and their families. The agreed definition of a traumatic event is one where individuals are confronted with unusual stress and are forced to cope with an unexpected and unfamiliar situation and which is an overwhelming, physical, emotional or social experience. In this instance, intensive care survivors may experience a level of trauma where the individual either perceives a risk of death to themselves or witnesses this in others, precipitating a psychological stress response. Although studies have identified the ICU experience for survivors, there has been limited research which provides an insight into survivors’ experiences during recovery through their individual lens. Identifying the unique perspective of survivors during recovery, support strategies can be implemented which address this disruption to the self and aid a meaningful recovery. The therapeutic benefits of narrative discourse in trauma survivors have been well recognised. Writing a coherent story following a traumatic experience is positively linked to improved coping and recovery and enabling the individual to re-create their stories brings about positive change and healthier outlook of the self. In the health care context storytelling has been explored in many areas of practice including dementia care, chronic illness management and maternal health. Storytelling in these settings has been linked to maintaining dignity, being emancipatory and increasing coping. Despite applications of storytelling elsewhere in health care it has not been widely reported in the study of ICU survivors although there has been some application with family members.
Purpose:
The purpose of this research was to explore the recovery stories of people who have been discharged from ICU during the first five months of recovery following a critical illness or event.
Methods:
Data were collected from diaries, face to face interviews, memos and field notes. Participants diarised for three months commencing two months after hospital discharge. At five months following discharge participants were interviewed about the content of their diaries and the symbols and signifiers within them to create a shared meaning of their experiences. Analysis of diaries and interviews were undertaken using two frameworks. This process enabled the identification of themes throughout participants’ stories and offers a unique portrait of recovery through their individual lens.
Results:
All of the participants considered their lives had irreparably changed as a result of their experience. The biographical methods provided a safe and creative way to reveal inner thoughts and feelings which may not have been revealed using other methods. This unique view through the lens of the survivor identified how unsupported by health care professionals they felt following discharge. Turmoil existed between survivors’ surface and inner worlds as they struggled to conform to the constraints of what recovery should be; imposed by the biomedical model. The process of constructing their stories enabled participants to reflect upon their experiences of recovery and bring a sense of coherence to their experiences.
Conclusion:
The use of guided reflection in the initial months following discharge from ICU creates a story which enables survivors to harness this ‘space for thought’ to provide a way forward from their trauma event or life disruption. Engaging with survivors during this vulnerable period and enabling them to reflect upon their experiences and pre-morbid lives assists them to re-focus upon the here and now as they recover and to reconcile the space between who they once were and who they are now. This study has implications for practice and research and has provided the impetus for further exploration of diarising as an intervention and the role of storytelling in this and other populations. Identifying the unique perspective of survivors during recovery, support strategies can be implemented which address this disruption to the self and aid a meaningful recovery.
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