The breath of life. Patients' experiences of breathing during and after mechanical ventilation.

INTRODUCTION: Breathlessness is a prevalent and distressing symptom in intensive care, underestimated by nurses and physicians. Therefore, to develop a more comprehensive understanding of this problem, the study had two aims: to compare patients' self-reported scores of breathlessness obtained during mechanical ventilation (MV) with experiences of breathlessness later recalled by patients and: to explore the lived experience of breathing during and after MV. METHOD: A qualitatively driven sequential mixed method design combining prospective observational breathlessness data at the end of a spontaneous breathing trial (SBT) and follow up data from 11 post-discharge interviews. FINDINGS: Four out of six patients who reported breathlessness at the end of an SBT did not remember being breathless in retrospect. Experiences of breathing intertwined with the whole illness experience and were described in four themes: existential threat; the tough time; an amorphous and boundless body and getting through. CONCLUSION: Breathing was not always a clearly separate experience, but intertwined with the whole illness experience. This may explain the poor correspondence between patients' and clinicians assessments of breathlessness. The results suggest patients' own reports of breathing should form part of nursing interventions and follow-up to support patients' quest for meaning.

Underestimation of Patient Breathlessness by Nurses and Physicians during a Spontaneous Breathing Trial.

RATIONALE: Breathlessness is a prevalent and distressing symptom in intensive care unit patients. There is little evidence of the ability of healthcare workers to assess the patient's experiences of breathing. Patient perception of breathing is essential in symptom management, and patient perception during a spontaneous breathing trial (SBT) might be related to extubation success. OBJECTIVES: To assess mechanically ventilated patients' experiences of breathlessness during SBT. METHODS: This was a prospective observational multicenter study of 100 mechanically ventilated patients. We assessed the agreement between nurses, physicians, and patients' 11-point Numerical Rating Scales scores of breathlessness, perception of feeling secure, and improvement of respiratory function at the end of an SBT (most performed with some level of support). We also determined the association between breathlessness and demographic factors or respiratory observations. MEASUREMENTS AND MAIN RESULTS: Sixty-two patients (62%) reported moderate or severe breathlessness (Numerical Rating Scales ≥ 4). The median intensity of breathlessness reported by patients was five compared with two by nurses and physicians (P < 0.001). Patients felt less secure and reported less improvement of respiratory function compared with nurses' and physicians' ratings. About half of the nurses and physicians underestimated breathlessness (difference score, ≤-2) compared with the patients' self-reports. Underestimation of breathlessness was not associated with professional competencies. There were no major differences in objective assessments of respiratory function in patients with moderate or severe breathlessness, and no apparent relationship between breathlessness during the SBT and extubation outcome. CONCLUSIONS: Patients reported higher breathlessness after SBT compared with nurses and physicians. Clinical trial registered with www.clinicaltrials.gov (NCT 01928277).

ICU-recovery in Scandinavia: a comparative study of intensive care follow-up in Denmark, Norway and Sweden.

OBJECTIVES: The aim of our study was to describe and compare models of intensive care follow-up in Denmark, Norway and Sweden to help inform clinicians regarding the establishment and continuation of ICU aftercare programmes. METHODS: Our study had a multi-centre comparative qualitative design with triangulation of sources, methods and investigators. We combined prospective data from semi-structured key-informant telephone interviews and unreported data from a precursory investigation. RESULTS: Four basic models of follow-up were identified representing nurse-led or multidisciplinary programmes with or without the provision of patient diaries. A conceptual model was constructed including a catalogue of interventions related to the illness trajectory. We identified three temporal areas for follow-up directed towards the past, present or future. CONCLUSIONS: ICU follow-up programmes in the Scandinavian countries have evolved as bottom-up initiatives conducted on a semi-voluntary basis. We suggest reframing follow-up as an integral part of patient therapy. The Scandinavian programmes focus on the human experience of critical illness, with more attention to understanding the past than looking towards the future. We recommend harmonization of programmes with clear goals enabling programme assessment, while moving towards a paradigm of empowerment, enabling patient and family to take an active role in their recovery and wellbeing.

'In a way, you have to pull the patient out of that state ': the competency of ventilator weaning.

The introduction of the weaning protocol has reduced weaning time and improved results in patients. However, the evidence is inconsistent. This may reflect that the use of a protocol should not exclude individual considerations and clinical judgement. However, the significant aspects of the context and the competency important in the nurse-patient relationship in weaning have not yet been sufficiently described. This study aimed at exploring these aspects of weaning. Qualitative data from six in-depth interviews and field observations of three experienced intensive care nurses in weaning situations were analysed through systematic text condensation within a hermeneutic-phenomenological approach. Competency appeared to be based on thorough knowledge of physiology and ventilator skills, but also on knowing the patient, helping the nurse connect the meaningless to the meaningful for the patient. Behaving competently involves a continuous dialogue with the situation, observation of the patient's body language and symptoms over a period of time and the ability to see the interrelationships of all these elements. Competency in ventilator weaning may thus be linked to personal qualifications, while it is simultaneously dependent on a professional community that both confirms and acknowledges this competency.

The meaning of follow-up in intensive care: patients' perspective.

The growing understanding of correlations between experiences and memories from a period of intensive care treatment and complaints of mental character has led to the development of various patient follow-up offers. Little, however, is known about what follow-up may mean to patients. The aim of this study was to explore the meaning of patients' lived experience of being followed-up in a programme consisting of patient diaries, post-intensive care unit (ICU) conversations and visits back to the ICU. Field notes were made from encounters with patients (n = 10) during follow-up. Then they were interviewed twice, at about 6 months (n = 8) and at about 18 months (n = 6) after discharge from hospital. The first interview focused on the patients' experience during intensive care and on their reflections on the experience. The second interview had a particular focus on the meaning for each individual of the sources for understanding that they had been offered. The data was analysed by using a hermeneutic-phenomenological approach. The study corroborated earlier research that found that patients seek to understand experiences they have undergone. They search for meaning in experiences and memories. It is realized that the diary as text and photos, in addition to conveying care and love, is important to induce postexperience reflections. It provided guideposts that follow-up conversations could pursue in the patient's quest for meaning. The conversation also provided an opening for, and could in itself be essential to, the patient's willingness to talk about experiences. It allowed the nurse to accompany the patient in his quest for meaning. The return visit appeared to be significant in the patient's quest for meaning. It was via 'feeling' the room that 'things' fell into place. The study is important in elucidating aspects that are beneficial in the patient's follow-up and which lay the basis for further development of existing and new follow-up offers.

A journey in quest of meaning: a hermeneutic-phenomenological study on living with memories from intensive care.

BACKGROUND: In a short-term perspective, a high incidence of psychological problems linked to memories from intensive care has been found in survivors of critical illness. Little is known about what kinds of memories patients might carry with them and what it is like to live with memories from intensive care as years go by. AIM: The aim of this study was to explore the meaning of living with memories from intensive care. METHODS: A hermeneutic-phenomenological approach. In-depth interviews with ten former intensive care patients 10 years after their admission. FINDINGS: Memories of bodily sensations and memories containing strong emotions were surprisingly well kept. Memories residing in the body at a prereflective level and that could be awakened without being triggered by will or conscious thought comprised an important segment of the memory spectrum. Complaints such as panic attacks and anxiety were strongly linked to these kinds of memories and experienced as flashbacks of frightening experiences that entailed strong emotions. Some informants still strove to understand experiences and reactions. Living with these memories and flashbacks was interpreted as a journey in quest of meaning. Having someone and something to live for implied strength on the journey. The presence of close relatives at the bedside provided strength to go on and someone with whom to share experiences afterwards. CONCLUSION: A period of critical illness and intensive care stay for treatment may leave durable traces in the patient's life. Finding meaning of existential and ontological nature seems to be of decisive significance for how people fare in their lives after having lived through intensive care treatment. The identified journey in quest of meaning points to the need for follow-up programmes, and we must acknowledge close relatives as important resources for the patient both at the bedside and in the subsequent process of discovering meaning in lived experience.