Collecting pieces for the 'puzzle': Nurses' intraprofessional collaboration in the hospital-to-home transition of older patients.

BACKGROUND AND AIM: Communication is a key factor in intraprofessional collaboration between hospital nurses and homecare nurses in hospital-to-home transitions of older patients with complex care needs. Gaining knowledge of the nature of cross-sectoral communication is crucial for understanding how nurses collaborate to ensure a seamless patient trajectory. This study explores how cross-sectoral electronic health records communication influences collaboration between hospital nurses and homecare nurses when discharging older patients with complex care needs. METHOD: The study is based on qualitative group interviews with six hospital nurses and 14 homecare nurses working at different hospitals and municipalities across Denmark. Data were analysed using reflexive thematic analysis, as described by Braun and Clark. FINDINGS: The themes Collecting pieces for the 'puzzle': Losing the holistic picture of the patient; Working blindfolded: limited provision of and access to critical information; and Bypassing the 'invisible wall': dialogue supports cohesion illustrate the impact of organisational structures within electronic health records have on hospital nurses' and homecare nurses' intraprofessional collaboration across sectors. Challenges with predefined and word-limited elements in digital communication, and inadequate and limited access to significant medical information were identified. To compensate for the inadequacy of the electronic health records, direct contact and dialogue were emphasised as ways of fostering successful collaboration and overcoming the barriers created by electronic health records. CONCLUSION: Despite hospital nurses' and homecare nurses' desire to conduct holistic patient assessments, their ability to collaborate was hindered by failures in electronic health record communication resulting from restrictive organisational structures across sectors. Thus, it became necessary for hospital nurses and homecare nurses to bypass the electronic health record system and engage in dialogue to provide holistic care when discharging older patients with complex care needs. However, by hospital nurses and homecare nurses compensating for counter-productive organisational structures, problems brought about by the electronic health record system paradoxically remain invisible.

Ambiguous personhood: Paradoxes of social belonging in Danish nursing home care.

In oldest old age (generally considered to be from 85 years onwards), personhood is often called into question, impacting well-being as a result. Based on ethnographic fieldwork, this article examines the well-being of oldest old nursing home residents at the intersections of ageism, fraying personhood and fragile social belonging in Danish nursing home care. In Denmark personhood hinges on both independence and social belonging; or "fællesskab." We examine how these concepts are practiced in nursing home care. Taking its starting point in the distinction between the "inside world" of the nursing home and the "real world" outside, the article examines how processes of othering occur in nursing home care, imperilling resident personhood and opportunities for social belonging. We consider how oldest old residents navigate social belonging, finding it in turn life-sustaining and vexatious. We argue that tacit ageism permeates the nursing home, to the detriment of resident well-being, despite the best intentions of an aged care system that is structured to specifically maintain personhood.

Coming home: older patients' and their relatives' experiences of well-being in the transition from hospital to home after early discharge.

BACKGROUND: This study aims to investigate the lived experience of well-being among older patients and their relatives in the transition from hospital to home after early discharge. Research has shown that the transition brings severe challenges to their everyday lives. However, to date, there has been a lack of research focusing on the lived experiences of well-being during this process. METHODS: The data collection and analysis followed the phenomenological approach of Reflective Lifeworld Research. Ten in-depth interviews with older patients and their relatives were conducted in Austria up to 2-5 days after hospital discharge. RESULTS: The essential meaning of the phenomenon of well-being in the transition from hospital to home is marked by security and confidence to face the challenges following the discharge. Four constituents emerged: being calm and in alignment with the homecoming, being in familiar surroundings at home-a sense of belonging, striving towards independence-continuity of life and having faith in the future. CONCLUSION: Our findings point to the importance of recognizing the vulnerability associated with the transition from hospital to home, as it impacts the existential aspects of space and time. Facilitating a sense of continuity and belonging can foster well-being during this critical period.

Alongside: Exploring the Meaningfulness of Significant Moments in Others' Lives Through Observation and Interview.

How do we explore the meaningfulness of others' experiences? What means do we have to access their experiencing of the world? How do we express our understandings of others' experiences of body and place without reducing them to objectification? In this methodological paper, we reflect on how we can gain valuable insights into the lived experiences of others through research activities that are conducted 'alongside' participants. Phenomenological concepts of intentionality and embodiment are considered as we draw on an empirical example of exploring the experiences of hospitalized patients with neurological diseases through observations and interviews. The aim is to unfold alongside as an epistemological stance to explore the meaning of another's lifeworld. We strive to show that personal presence and engagement within this approach contains relational, existential, and aesthetic dimensions worth considering.

Temporalities of Aged Care: Time Scarcity, Care Time and Well-Being in Danish Nursing Homes.

Aged care staff in Danish nursing homes feel the pressures of time scarcity acutely. But what does this mean for the well-being of residents? Using the concept "care time" we consider subjective experiences of time to make sense of the multiplicity of temporal experiences in nursing home care. We will show how the temporal structures of a neoliberal institutional care logic is at odds with what residents expect from care time. Finally, drawing on a phenomenological understanding of well-being, we explore how residents' temporal orientation to the present and the past can be drawn on to enhance well-being.

Ethics and the impossibility of the consent form: Ethnography in a Danish nursing home.

Based on ethnographic fieldwork in a nursing home in northern Denmark, this article addresses challenges experienced in putting formal ethics requirements into practice. We consider how to unite procedural ethics with actual, lived ethics, when researching with vulnerable participants who live with a cognitively impairing condition. The article centers on the story of one resident, who wanted to share her experiences with what she had perceived as inadequate care, but who baulked once the wordy consent form was produced. The resident panicked that her words could now be used against her, that talking with the researcher would (further) compromise her care. She was caught in a bind, on the one hand she had a deep desire to tell her story, on the other the piece of paper in her hand threatened to trigger her anxiety and depression. In this article we therefore approach the consent form as an agent. By mapping out these unintended consequences of the consent form, we wish to draw attention to the complexities of ethical research conduct in practice, ultimately arguing that the concept of appropriate informed consent should be broadened so that it is sensitive to the lifeworld of participants.

Being well? A meta-ethnography of older patients and their relatives' descriptions of suffering and well-being in the transition from hospital to home.

BACKGROUND: As the average length of hospital stay decreases, more and more older patients will need support during and after the hospital transition, which will mainly be provided by their relatives. Studies highlight the enormous effect such a transition has on the lives of older patients and their relatives. However, research is lacking regarding in-depth understanding of the complexities and the notions of suffering and well-being the older patients and their relatives describe in the transition from hospital to home. Therefore, this study aims to examine the description of suffering and well-being on a deeper, existential level by drawing on existing phenomenological research. METHODS: In order to synthesize and reinterpret primary findings, we used the seven-step method for meta-ethnography. Following specific inclusion criteria and focusing on empirical phenomenological studies about older patients and their relatives experiences of hospital to home transitions, a systematic literature search was conducted. Data from ten studies have been analyzed. RESULTS: Our analysis identified three intertwined themes: i) 'Being excluded vs. being included in the transition process', ii) 'Being a team: a call for support and a call to support' and iii) 'Riding an emotional rollercoaster'. The last theme was unfolded by the two subthemes 'Taking on the new role as a caregiver: oscillating between struggling and accepting' and 'Getting back to normal: oscillating between uncertainty and hope'. Within those themes, older patients and their relatives described rather similar than contradictory aspects. CONCLUSIONS: This study offers insights into the tension between existential suffering and well-being described by the older patients and their relatives during the transition from hospital to home. Especially, the description of well-being in all its nuances which, if achieved, enables older patients and their relatives to identify with the situation and to move forward, this process can then be supported by the health care professionals. However, there is still lack of knowledge with regards to a deeper understanding of existential well-being in this process. Given the increasing tendency towards early hospital discharges, the findings underpin the need to further investigate the experiences of well-being in this process.

Who cares?-The unrecognised contribution of homecare nurses to care trajectories.

BACKGROUND: Organisation of patients' trajectories is a critical element of nursing practice. However, nursing practice is mainly expressed in terms of direct patient care, while the practices through which care is organised have received little attention, are poorly acknowledged and lack formal recognition. AIM: To examine the management of care trajectories as provided by homecare nurses. DESIGN: We conducted focus group interviews with 29 Danish homecare nurses. The analysis drew on the evidence based and theoretically informed framework care trajectory management. Care trajectory management is conceptualised as comprising of three organisational components: (1) Trajectory awareness, (2) Trajectory working knowledge and (3) Trajectory articulation. FINDINGS: The organising work of homecare nursing is both complex and unpredictable requiring advanced organisational, collaborative and clinical competences to secure concerted actions in alignment with the needs of the individual patient. Without having any formal obligation homecare nurses took on the responsibility for the coordination of the different activities of the professional actors, and for securing concerted actions. Care trajectory management as provided by homecare nurses reflected a high degree of commitment for patients and illustrated that this type of organising work was driven by the values of the humanistic ethos of nursing. CONCLUSION: The study highlights the strength of the invisible and ongoing organising work of homecare nurses. Care trajectory management in homecare reflects the moral foundation of nursing. Consequently, the professional logic of nursing reflected as direct patient care alone is too narrow. We need to acknowledge the organising work of patients' trajectories as a core task equal to direct patient care. Our study highlights the need for articulating the organising work of homecare nurses and for presenting problematic organisational structures to policymakers and managers. If not, the important organisational work of homecare nurses is at the risk of remaining invisible.

What Makes Dependency on Homecare Bearable? A Phenomenological Study.

Becoming dependent on homecare in old age is a radical life change that requires complex adaption. The purpose of this study was to explore the existential dimension of being dependent on homecare with a particular focus on what makes dependency bearable. In total, 15 older people living in Denmark or Norway were interviewed using a phenomenological approach. The material was analyzed employing Max van Manen's meaning-giving approach coined "Phenomenology of practice." During the analysis, four themes emerged: pure acceptance of an inevitable situation, acting independently as much as possible, negotiating to receive good care, and gratitude toward caring caregivers. The results point to a need for respectful and individualized homecare leveling out the subordinate position in which dependency on homecare tends to place older people.

Ageing with neuromuscular disease: getting lost in transitions.

PURPOSE: To explore the lived experiences of people ageing with neuromuscular disease (NMD). INTRODUCTION: NMD refers to several chronic types of hereditary and progressive NMDs. Owing to advances in rehabilitation and treatment, life expectancy has increased for some subtypes, resulting in life continuing into adulthood and even old age; however, knowledge of people's lived experiences with NMD is sparse. METHODS: A qualitative study using a phenomenological-hermeneutic approach inspired by Ricoeur was conducted. Fifteen persons with NMD were interviewed in 2018. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used. RESULTS: Four themes were identified: "A time-framed paradox of striving for independent dependency arises as age increases", "Ageing means entering no man's land", "Exercising is caught between shrinking surplus of physical energy and demands of everyday life" and "Ending work life is a jumble of relief, concern and altered self-perception". CONCLUSION: The pathway to old age with NMD encompasses several transitions, all potentially including the risk of getting lost. Physical changes, changes in legislation, experiences of uncertainty regarding where one socially belongs and how to balance reduced physical strength in everyday life are indicated as key areas that affect ageing life with NMD.Implications for rehabilitationRehabilitation professionals should address ageing with NMD from a life course perspective and not with a singled minded focus on chronological age.A biopsychosocial focus is needed to prevent gaps and pave the pathway to old age with NMD.The experiences of multiple transitions when ageing with NMD should be in focus.

Ageing with neuromuscular disease: Implications for a lifeworld-led care through a humanising approach.

OBJECTIVES: To understand the care and support needs in ageing with neuromuscular disease from a patient-user perspective. BACKGROUND: The term neuromuscular disease covers several chronic hereditary or acquired disease subtypes. In the developed countries, advances in symptoms management, technical advancements and rehabilitation initiatives have resulted in increased life expectancy for some subtypes. Life with neuromuscular disease is thus likely to continue into adulthood and old age. However, knowledge of the care and support needs of patients ageing with neuromuscular disease remains sparse. DESIGN: Adopting a user-participatory approach embedded in a phenomenological hermeneutic tradition, we conducted two user-group discussions focusing on care and support needs in people ageing with neuromuscular disease. Twenty-five users with neuromuscular disease participated in the group discussions. Data were analysed using a three-stepped analysis method inspired by the French Philosopher Paul Ricoeur. In the analysis process, dialectical movements between a surface interpretation and an in-depth understanding occur. The COREQ checklist was used to report the study. RESULTS: Two themes were identified; 'Changes in the sheltering relationships of life require preparation' and 'Ageing introduces a dichotomy between circumstantial normalcy and minority groupness'. An understanding of care and support needs in life with neuromuscular disease was reached revealing a need for a lifeworld-led approach. CONCLUSION: Persons ageing with neuromuscular disease crave a fusion of disease- and age-led care and support. This fusion may be achieved through the introduction of a lifeworld-led approach to care and support. RELEVANCE FOR CLINICAL PRACTICE: Unmet care and support needs in people ageing with neuromuscular disease may result in patients experiencing fear and concern about their life situation. Healthcare professionals may play a crucial role in creating coherent lives for these persons if they understand the approach proposed herein to uncover the care and support needs in people ageing with neuromuscular disease.

Participation amongst people ageing with neuromuscular disease: a qualitative study of lived experiences.

AIM: To explore the lived experiences of participation in everyday life ageing with neuromuscular disease (NMD). DESIGN: A qualitative study using a phenomenological-hermeneutic approach. METHODS: Data were gathered through interviews with 15 persons living with NMD in 2018. A three-levelled analysis and interpretation influenced by Paul Ricoeur's philosophy were conducted. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used from May 2018 to December 2018. RESULTS: Three themes were identified: "Endless adaptations change the fundamentals of everyday life ageing with NMD," "The 'swamp' of deterioration" is traversed through experiences of belonging and relationship," "Being disabled by a professional knowledge gap and stereotypical images." In these themes, the experience of participation in everyday life ageing with NMD appeared to depend on the ability to adapt constantly. Through participation, a sense of belonging and purpose was maintained. Lack of knowledge amongst professionals may negatively affect the ongoing participation of people ageing with NMD.

Aesthetics sets patients 'free' to recover during hospitalization with a neurological disease. A qualitative study.

BACKGROUND: Patients with neurological symptoms are particularly sensitive to the quality of the sensory impressions to which they are exposed to during hospitalization. AIM: To understand the meaning of aesthetic experiences to patients afflicted with neurological diseases during hospitalization on a neurological unit. METHOD: Fifteen patients were invited to "walk and talk" supplemented by semi-structured interviews conducted in newly established aesthetic tableaus within the neurology unit. Data analysis was inspired by the hermeneutic phenomenological methodology of van Manen. RESULT: The data analysis identified three overarching themes that unfolded in the patients' experiences of a more aesthetic environment. The themes were: 1) A safe place to avoid noisiness, 2) An invitation to homey activities, 3) A thoughtful consideration for being ill. CONCLUSION: Aesthetic elements can enable a thoughtful and needed consideration that withholds momentarily imaginative and hopeful experiences to patients in a vulnerable situation. Thus, aesthetics, together with peace and quietness, can set vulnerable patients free to retreat and recover from the symptoms of neurological diseases.

Becoming a nomad when hospitalized with a neurological disease: a phenomenological study.

Patients with a neurological disease are affected by their ability to maintain focus and are easily disturbed by outside stimuli. Few studies have investigated how sensory impressions from the physical environment contribute to patient's wellbeing during hospitalization. However, no studies have explored the meaning of the environment to patients with a neurological disease during hospitalization. To understand what it is like to be a patient in a hospitalized environment at the neurological department. Nine patients were interviewed. Data analysis was inspired by the hermeneutic phenomenological methodology of van Manen. Four themes were identified: Perceiving unrest leading to despair; Angling for attention from staff; Being in a vacuum of imposed passivity; Seeking breathing spaces. The study provides insight into how environment plays a significant role in relation to existential issues for patients during hospitalization. Hence, the patients illuminate the experience of becoming nomads lurking around to find breathing spaces when they were not offered a calm and familiar environment. Patients shared that a hospital interior can be appealing and uplifting, decreasing their experiences of placelessness and thereby supporting them in a life situation where they feel less threatened concerning their health and wellbeing.

The balancing act of dementia care: an ethnographic study of everyday life and relatives' experiences in a Danish nursing home for people living with advanced dementia.

PURPOSE: The purpose of this study was to explore how everyday life was organized in a Danish nursing home for people living with advanced dementia and how relatives experienced their family members' everyday lives. METHODS: Field notes from participant observations (approximately 160 hours) and transcripts from ethnographic interviews with relatives (9) were analysed thematically in accordance with ethnographic principles. RESULTS: The analysis revealed one main theme, 'Enabling a meaningful everyday life in the nursing home' with two corresponding sub-themes: (1) Structures of daily life: Balancing collective and individual activities and (2) Physical togetherness: Balancing being together and being alone. CONCLUSIONS: The findings showed that everyday life in the nursing home was organized to support a meaningful life for the residents by providing activities and togetherness on a daily basis. While relatives generally appreciated the everyday life experienced in the nursing home, challenges were encountered in connection with the provision of an appropriate balance between levels and types of activities and togetherness for all residents.

Vulnerability in Nurses: A Phenomenon That Cuts Across Professional and Private Spheres.

Patients' vulnerability is a core concern in nursing. However, the nurse's endeavor to succeed may precipitate her vulnerability. Involving master students, 14 nurses' experiences of vulnerability in their professional roles were explored with a descriptive phenomenological approach. Vulnerability among nurses showed to be a latent feeling that manifests via bodily reactions including being overwhelmed by one's feelings and struggling to avoid being hurt. These experiences were evident in situations with patients and relatives, but also coworkers and working conditions, the latter suggests that the exposure of vulnerability may be possible to reduce by organizational awareness.

The Lived Experience of Alcohol Dependence: A Reflective Lifeworld Research among Outpatients in Alcohol Treatment.

Alcohol dependence is a major health problem. Existing literature is sparse on the lived experience of alcohol dependency. Nurses may find it difficult to care for patients with alcohol dependence. The purpose of this study was to explore the lived experience of alcohol dependence among outpatients in alcohol treatment to get a comprehensive understanding from the patients' perspective. The study used a phenomenological descriptive approach and in-depth interviews were conducted with five patients in outpatient alcohol treatment. Five constituents illuminated the essence. Alcohol dependence is associated with physical, psychological and relational suffering: feelings of shame emerged as a significant theme.

Nurses experiences of ethical dilemmas: A review.

BACKGROUND: Nursing care is rapidly evolving due to the advanced technological and medical development, and also due to an increased focus on standardization and the logic of production, permeating today's hospital cultures. Nursing is rooted in a holistic approach with an ethical obligation to maintain and respect the individual's dignity and integrity. However, working within time limits and heavy workload leads to burnout and ethical insensitivity among nurses, and may challenge nurses' options to act on the basis of ethical and moral grounds in the individual care situation. AIM: The aim of this study is to describe and discuss ethical dilemmas described and experienced by nurses in clinical practice today. METHOD: The study was performed as a literature review following the matrix method allowing to synthesize literature across methodological approaches. A literature search was performed, including relevant studies published between 2011 and 2016. A total of 15 articles were included and analyzed focusing on their description of ethical dilemmas. ETHICAL CONSIDERATION: We have considered and respected ethical conduct when performing a literature review, respecting authorship and referencing sources. RESULTS: The analysis revealed three themes, relating to important aspects of nursing practice, such as the nurse-patient relationship, organizational structures, and collaboration with colleagues. The findings are summarized in the following three themes: (1) balancing harm and care, (2) work overload affecting quality, and (3) navigating in disagreement. Ethically difficult situations are evident across settings and in very diverse environments from neonatal care to caring for the older people. Organizational structures and being caught in-between professional values, standardization, and busyness was evident, revealing the complexity of nursing practice and the diversity of ethical dilemmas, concerns, and distress experienced by clinical nurses. CONCLUSION: Nursing practice is challenged by organizational structures and the development of the health care system, inhibiting nurses' professional decision-making and forcing them to compromise basic nursing values.

Struggles with infrastructures of information concerning hospital-to-home transitions.

Homecare nurses play a unique role in providing care during the follow-up after hospital discharge and in preventing readmission. The aim of this study was to explore the key challenges faced by homecare nurses in relation to caring for discharged patients. Data were collected through five focus group interviews with 29 Danish homecare nurses and subjected to inductive content analyses. The key challenges faced by homecare nurses fell into three themes: struggling to see the bigger picture, caring for patients from a distance, and compromising on professionalism. The findings demonstrated a paradox between the need for information and the struggle to access this information due to complicated infrastructures of information-sharing. Homecare nurses took on a substantial responsibility in providing the best possible care despite having limited information. Ironically, by taking on this responsibility, they implicitly contribute to covering up the problems of organisational and professional information flow.

Hospital meals are existential asylums to hospitalized people with a neurological disease: A phenomenological-hermeneutical explorative study of the meaningfulness of mealtimes.

AIM: Hospital meals are challenging for neurological patients. Patients struggle with both physical eating disabilities and social issues during mealtimes. The aim of this study was to examine the meaningfulness of the phenomenon of hospital meals for hospitalized patients with a neurological disease. DESIGN: Interviews (N = 23) with neurological patients were analysed and interpreted to gain in-depth comprehensive knowledge of the phenomenon of hospital mealtimes. METHOD: Data were analysed and interpreted in a three-phased process using a phenomenological-hermeneutic approach inspired by Paul Ricouer. RESULTS: Four themes were identified: (a) A lonely ride together with others; (b) Letting the chaotic setting fade into the background; (c) Mechanical activity with great personal significance; and (d) Humanizing the setting when eating in the hospital. Mealtimes were supporting existential moments to patients. Offering a calm mealtime setting was experienced by the patients as an asylum where uplifting and comforting feelings were raised.