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.
The findings show that 31 out of 70 ICUs offer patient diaries, and many units have a long history of diary writing. Most of the units have some kind of guidelines, and the study has shown that diaries serve dual purposes; one of caring and another of therapy. Although these two dimensions seemingly present a paradox from a theoretical point of view, a combination appears to be at work in clinical practice. This may be explained by a tendency in nursing to regard caring as superior to therapy. The writing frequency varies, and the units that reported high activity provided follow-up programs in addition to diary writing. Diary writing as a nursing intervention is threatened by a lack of funding.
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.
PurposeTo illuminate patients’ lived experiences of going through the process of being diagnosed with chronic obstructive pulmonary disease (COPD).Patients and methodsA phenomenological-hermeneutic analysis was applied in the interpretation of interviews with eight persons diagnosed with mild or moderate COPD.ResultsOne main theme ‘living in negotiation’, and three themes ‘living with a body out of step with the diagnosis’, ‘dealing with the past’, and ‘being challenged by the future’ reflected the process participants were living through in their quest for acceptance and a new balance in life. Participants found that the diagnostic processes were confusing, and that the diagnosis itself was ‘a slap in the face’. Unclear messages gave rise to fluctuating between an understanding of the condition as ‘not too severe’, insecurity, and fear. Shame and guilt related to the diagnosis had origins in the past, and in combination with the idea of ‘chronic’ the COPD diagnosis interfered with the present moment and gave rise to uncertainty for the future. The understanding of the present is related to negotiations not only with the past, but also with the future. Thus temporal aspects of the diagnosis are of great significance for the process of finding acceptance.ConclusionRegardless of disease severity, the diagnosis seems to be a breakdown of life, which puts life itself at stake. Medical professionals should be aware that the way the diagnosis is disclosed and communicated has considerable significance for how individuals understand and deal with their illness. The diagnosis should be communicated face-to-face, clearly and with empathy, and followed by information about COPD. Physicians should allow time and listen to the patients’ stories, and thus develop a shared understanding of the temporal aspect of the illness and patients’ needs and concerns. Thus, good communication is essential in determining whether the patient remains in negotiation, or enters a process toward acceptance and new understanding.
Critical illness and intensive care therapy are often followed by psychological problems such as nightmares, hallucinations, delusions, anxiety, depression, and symptoms of posttraumatic stress. Intensive care patient diaries have been kept by nurses and the patients' family since the early 1990s in the Scandinavian countries to help critically ill patients come to terms with their illness after hospital discharge. The aim of the study was to describe and compare the emergence and evolution of intensive care patient diaries in Denmark, Norway, and Sweden. The study had a comparative international design using secondary analysis of qualitative data generated by key-informant telephone interviews with intensive care nurses (n=114). The study showed that diaries were introduced concurrently in the three Scandinavian countries as a grass-roots initiative by mutual cross-national inspiration. The concept has evolved from a pragmatic practice to an evidence-based domain of inquiry propelled by academically prepared nurses. Several schools of thought were identified in our study: diaries as (i) a therapeutic instrument, (ii) an act of caring, (iii) an expression of empathy, and (iv) a hybrid of the above. Diaries have the potential to fulfill the existential needs of patients who struggle to make sense of their experiences and construct their own illness narrative.
IntroductionOptimal management of mechanical ventilation and weaning requires dynamic and collaborative decision making to minimize complications and avoid delays in the transition to extubation. In the absence of collaboration, ventilation decision making may be fragmented, inconsistent, and delayed. Our objective was to describe the professional group with responsibility for key ventilation and weaning decisions and to examine organizational characteristics associated with nurse involvement.MethodsA multi-center, cross-sectional, self-administered survey was sent to nurse managers of adult intensive care units (ICUs) in Denmark, Germany, Greece, Italy, Norway, Switzerland, Netherlands and United Kingdom (UK). We summarized data as proportions (95% confidence intervals (CIs)) and calculated odds ratios (OR) to examine ICU organizational variables associated with collaborative decision making.ResultsResponse rates ranged from 39% (UK) to 92% (Switzerland), providing surveys from 586 ICUs. Interprofessional collaboration (nurses and physicians) was the most common approach to initial selection of ventilator settings (63% (95% CI 59 to 66)), determination of extubation readiness (71% (67 to 75)), weaning method (73% (69 to 76)), recognition of weaning failure (84% (81 to 87)) and weaning readiness (85% (82 to 87)), and titration of ventilator settings (88% (86 to 91)). A nurse-to-patient ratio other than 1:1 was associated with decreased interprofessional collaboration during titration of ventilator settings (OR 0.2, 95% CI 0.1 to 0.6), weaning method (0.4 (0.2 to 0.9)), determination of extubation readiness (0.5 (0.2 to 0.9)) and weaning failure (0.4 (0.1 to 1.0)). Use of a weaning protocol was associated with increased collaborative decision making for determining weaning (1.8 (1.0 to 3.3)) and extubation readiness (1.9 (1.2 to 3.0)), and weaning method (1.8 (1.1 to 3.0). Country of ICU location influenced the profile of responsibility for all decisions. Automated weaning modes were used in 55% of ICUs.ConclusionsCollaborative decision making for ventilation and weaning was employed in most ICUs in all countries although this was influenced by nurse-to-patient ratio, presence of a protocol, and varied across countries. Potential clinical implications of a lack of collaboration include delayed adaptation of ventilation to changing physiological parameters, and delayed recognition of weaning and extubation readiness resulting in unnecessary prolongation of ventilation.
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