Sissel Lisa Storli

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 patients 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.

Decisional responsibility for mechanical ventilation and weaning: an international survey

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.

An act of caring - patient diaries in Norwegian intensive care units.

AIM The aim of this study was to obtain more knowledge about the background, extent and implementation of diaries in Norwegian intensive care units (ICUs) providing mechanical ventilation to adult patients. BACKGROUND The growing understanding of long-term consequences of intensive care therapy has compelled nurses to introduce patient diaries to prevent problems after discharge from ICU. Research on this practice is limited. DESIGN/METHOD The study had a qualitative descriptive design, and was conducted by means of semi-structured telephone interviews with 30 participants, all experienced intensive care nurses. The strategy of analysis was a template organizing style. FINDINGS 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.

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.

Using diaries in intensive care: A method for following up patients

Patients’ recollections of intensive care are often a confusing mixture of ‘reality’, past experiences and vivid dreams. Many intensive care patients find it difficult to make sense of their experiences. In our intensive care unit, for several years, we have been using patient diaries to record the patient’s stay in intensive care. The diaries are utilised as part of a follow-up programme that helps the patient to understand, and come to terms with, their intensive care admission. The diaries have been positively evaluated by both patients and staff, and are a valuable tool for learning from patents’ experiences.

Do I need it? Do I really need it? Elderly peoples experiences of unmet assistive technology device needs

An unmet need for assistive technology devices (ATD) occurs when a person would benefit from ATD, as assessed by health-care professionals or by the person In question. Unmet ATD needs In the elderly population have been documented, but little is known about the experience of living with such unmet needs. Purpose: To investigate the unmet need experiences of home-dwelling elderly people In Norway who have applied for ATD. Method: Nine elderly people who lived at home and had applied for ATD were interviewed. The interview transcripts were analysed withIn a hermeneutical phenomenological perspective. Results: The unmet ATD need experiences involved enduring a difficult situation by adjusting their expectations and activities, being introduced to ATD as a possible solution to the difficulties and negotiating this potential solution In light of the perceived situation. Conclusion: Observers assessments of unmet ATD needs are not readily experienced as such by the elderly. Adjusting expectations and activities enabled the participants to maintaIn meaningful activities but also made the difficulties less likely to be articulated as unmet needs. When encountering elderly people, health-care professionals must be sensitive to the unarticulated needs and potential difficulties of the elderly In performing everyday activities. Implications for Rehabilitation Health-care professionals must allow elderly people to define their individual difficulties and state their need for assistive technology. Elderly people are creative problem solvers when managing difficulties In their everyday life. Providing information on assistive technology devices and how to obtaIn them is not sufficient to prevent elderly people from living with unmet assistive technology needs.

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

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.

''Being somewhere else'' * delusion or relevant experience? A phenomenological investigation into the meaning of lived experience from being in intensive care

Patients’ experiences of having been “elsewhere” during intensive care than in the intensive care unit (ICU) has traditionally been placed in a context with described pathological circumstances, such as brain dysfunction, and labeled with terms such as “unreal” and “delusional”. The aim of the study was to look more closely into this type of experience by turning to its meaning as reflected on by patients themselves. Through a phenomenological investigation based on follow-up and interviews with three patients, we found that the “delusions” were in fact filled with meaning. They mattered to the patients and were not to be dismissed as unreal because they were so inherently real in the lived body. The experiences were grounded in the patients lifeworld and could be interpreted as expressions of basic aspects related to being human in the world. The phenomenological term “lived mood” emerged as one such aspect to which intensive care patients appear to surrender more readily than man does in daily existence. The notion of “being somewhere else” as meaningful and relevant experience challenges the explanatory model whereby such experiences are placed in a context with brain dysfunction.

Living in negotiation: Patients' experiences of being in the diagnostic process of COPD

Purpose To illuminate patients’ lived experiences of going through the process of being diagnosed with chronic obstructive pulmonary disease (COPD). Patients and methods A phenomenological-hermeneutic analysis was applied in the interpretation of interviews with eight persons diagnosed with mild or moderate COPD. Results One 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. Conclusion Regardless 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.

Exploring the meaning of a new assistive technology device for older individuals

Abstract Researching the outcomes of assistive technology devices (ATDs) for older clients is important to facilitate clinical decision-making. However, to understand the outcomes associated with ATDs, one must investigate the users’ experiences and acknowledge the user as an active participant in diverse social contexts. Purpose: To enhance understanding of the users’ perspective regarding ATDs, this study aimed to investigate the meaning of the ATD for older individuals still living in their home environment. Methods: To provide descriptions of ATD experiences, older individuals who received a new ATD to compensate for their challenges in moving around, assist in self-care or both were recruited for the study. Participants were interviewed twice, with a few months between interviews, about their experience in using their new ATD. The interview transcripts were analyzed in a hermeneutical–phenomenological research approach. Results: The analysis revealed three recurring themes associated with the description of ATD experiences: “enabling performance and choice”, “transformation from requiring assistance to assisting others”, and “preparing for the future”. Conclusion: The results show that ATDs are used to enhance competence, mastery, control, self-worth, hope, and preparedness. The ATD service delivery should be client-centered and the client should be acknowledged as an active participant in producing change. Implications for Rehabilitation Researching outcomes of assistive technology devices are complicated and should involve the user experience. Assistive technology devices does not have to be used in concrete actions to involve meaning for the user. Health care professionals should be sensitive towards the meaning dimensions of the assistive technology devices as experienced by the user throughout the service delivery process.