Cross-sectoral exchange of nurses: An intervention study.

BACKGROUND: In health policy, much attention has been paid to collaboration between the primary and secondary health care sectors, especially in relation to hospitalisation and discharge. Despite ideal plans for collaboration, the research literature shows that inadequate communication is a well-known problem that can be a barrier to a safe trajectory for the citizen. Based on the assumption that better knowledge of each other's work will lead to better collaboration, a cross-sectoral exchange program with nurses was initiated. AIM: The aim was to investigate which barriers to good patient trajectories the involved nurses attributed to cross-sectoral collaboration and what impact the exchange to the opposite sector had for them. METHODS: Twenty-eight nurses were exchanged: 14 from a cardiology department and 14 from municipal home care. The nurses shadowed a colleague from the opposite sector in their daily work. Subsequently, six focus group interviews were conducted. The transcribed material was analysed based on Ricoeur's interpretation theory. RESULTS: Two main themes, including sub-themes emerged: (1) Challenging communicative conditions: (a) Inadequate digital communication, (b) Inadequate care plans and discharge reports, (c) Conversation promotes understanding, and (d) Challenging collaboration and communication with the discharge coordinators. (2) Perceived importance of the exchange: (a) Cross-sectoral relationship, prejudice and gaining respect for each other and (b) Working in two different worlds. CONCLUSION: Electronic communication is inadequate, and the IT systems do not support sufficient cross-sectoral communication. The organisational model in the municipal care sector is inflexible in terms of allocations for the current needs of citizens, and professionals feel that their professional judgements are not recognised. The nurses gained insight into each other's work and working conditions and respect for each other's professionalism. The exchange has the potential to both improve the relationship and communication between the sectors for the benefit of a better and more coherent patient course.

Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study.

PURPOSE: The curative oesophageal cancer continuum-diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals is vital yet not well described. The purpose of the study was to explore patients' and relatives' experiences with the process of decision-making through the EC illness and treatment trajectory. METHODS: Longitudinal explorative design was employed based on ethnographic fieldwork in the form of participant observations inspired by the American anthropologist James Spradley. RESULTS: Sixteen patients and 18 relatives were recruited for participant observations. In total, 184 hours of participant observations were conducted. The study showed that decision-making was filled with tension and edginess. Four themes were identified: 1) The encounter with the medical authority, 2) The need to see the big picture in the treatment trajectory, 3) A predetermined treatment decision, and 4) Meeting numerous different health professionals. CONCLUSION: The EC trajectory and decision-making were filled with anxiety. Patients and relatives lacked an overview of the treatment pathway, leading to their role in decision-making often being governed by the medical authority. Timing information and continuity are vital factors in decision-making.

Person-centred communication with cancer survivors: Exploring the meaning of follow-up coaching conversations.

AIM: The aim of this study was to explore the meaning of a coaching intervention for cancer survivors. BACKGROUND: Cancer survivors often experience existential concerns and worries after adjuvant treatment. A number of "care transition interventions" have been developed to improve person-centred care by empowering patients. Several of these interventions include a "care transition coach". A coaching approach to communication used in health care communication have among others shown to assists in establishing confidential relationships between health professionals, increase the patient's well-being and support the patient's experience of being met and viewed as a whole person. DESIGN: This is a qualitative study using semi-structured interviews to explore the meaning of a coaching intervention. In analyzing and interpreting the qualitative interviews Ricoeur's theory of interpretation was applied. METHOD: The intervention consisted of two parts: (1) a two-day training program in coaching for nurses and (2) a specially developed communication intervention for cancer survivors. RESULTS AND DISCUSSION: The analysis of the transcribed interview material led to the development of two themes: (1) Support in moving forward in life, and (2) An opportunity to talk about existential thoughts and worries. Our results show how the experience of cancer, even when cured, leaves the survivors with profound existential worries. The cancer survivors described how coaching conversations allowed them to express their current concerns and provided them with an opportunity to discuss wider issues than treatment, symptoms, and after-effects, which had been the main focus during treatment. CONCLUSION: The time immediately after the end of adjuvant treatment can be challenging, with many existential concerns and opposing emotions. We found that the follow-up coaching conversations performed helped the cancer survivors to process many of these difficult thoughts and feelings.

Shaping Better Rehabilitation to Chronic Obstructive Pulmonary Disease Patients: Experiences of Nurses and Colleagues With an Interdisciplinary Telerehabilitation Intervention.

In order to evaluate the reach of a collaborative cross-sectoral telerehabilitation intervention to patients with Chronic Obstructive Pulmonary Disease (COPD), this study investigates how nurses and interdisciplinary colleagues experienced working with it. In two focus group interviews, the experiences of working in the empowerment and tele-based >C☺PD-Life>> program were examined among three nurses and four interdisciplinary colleagues. Data were analyzed with inspiration from Ricoeur's theory of narrative and interpretation and discussed with Gittell's theory of relational coordination. Nurses and colleagues experienced that the intervention paved the way for unique patient-professional coordination and interdisciplinary cross-sectoral teamwork that allowed double-layered relational coordination, focusing holistically on patients' lived challenges in everyday life with COPD. By this rehabilitation setup, nurses and colleagues are perceived as educated to deliver high standard personalized support, raising professional pride and confidence. The findings can inspire future health-promoting initiatives within nursing support related to patients afflicted with COPD.

Psychiatric care and education understood from a student perspective: Enhancing competences empowering personal and social recovery.

BACKGROUND: During the last decades, a recovery-based approach has called for a change in mental health care services. Several programmes have been presented, and the need to develop student and professional competences in education and clinical practice has been documented. AIM: The aim of this study was to explore how psychiatric care is understood seen from a student perspective (nursing students, masters nurses and a master in applied philosophy) with focus on their personal competences and the educational interventions empowering processes for users' personal and social recovery. METHOD: A qualitative design with a phenomenological-hermeneutic approach based on the French philosopher Paul Ricoeur's theory of interpretation. Data were collected through semi-structured interviews. FINDINGS: All interviewees expressed that both theoretically and clinically students did not experience a recovery-oriented approach empowering users' personal and social recovery process. On the contrary, they experienced that both education and practice were dominated by a biomedical approach providing clinical recovery. However, several students were aware of their need of developing personal and relational competences to be able to support the users' personal and social recovery journey. The students expressed that there is a need for educational processes targeting personal competences in 'becoming a professional' supporting 'presentness and awareness' and thereby the development of relational abilities and the courage to engage. The results relate to two nursing schools and two universities. CONCLUSION: A biomedical approach dominates and makes it difficult to develop students' personal competences during education in practice and theory vital to the development of personal and social recovery-oriented practices. It is recommended that educators-in practice and in school-accentuate presentness, awareness and creativity as crucial relational capabilities and incorporate this in their teaching and supervision method, supporting the education and formation of the students' (and teachers' and supervisors') personal development processes.

Patients' experiences of the decision-making process for clinical trial participation.

Clinical decision-making about participating in a clinical trial is a complex process influenced by overwhelming information about prognosis, disease, and treatment options. The study aimed to explore patients' experiences of the decision-making process when patients are presented with the opportunity to participate in a cancer clinical trial and to shed light on how patients experience the health communication, the nurse's role, and the physician's role. A qualitative study design was applied. Nine patients with advanced cancer were interviewed after being informed about their treatment options. Data were analyzed using thematic analysis. The results showed that patients made treatment decisions mainly guided by their emotions and trust in the physician. Furthermore, the physicians had a great impact on the decisions, and the nurse's role was associated with conversations about how to manage life. The study highlights the importance of talking about prognosis and addressing the patient's existential issues, particularly in this context of advanced cancer. The study elucidates a need for healthcare professionals to engage in health communication about life when it is coming to an end.

Raised illness mastering - a phenomenological hermeneutic study of chronic obstructive pulmonary disease patients' experiences while participating in a long-term telerehabilitation programme.

PURPOSE: To investigate COPD patients' experience on the mastering of their illness during participation in a long-term interprofessional and cross-sectoral telerehabilitation programme called > C☺PD-Life≫. MATERIALS AND METHODS: A phenomenological-hermeneutic study design with combined participant observations and individual interviews formed a continuous data generation among fifteen patients while they participated in the programme. Data underwent a three-levelled interpretation inspired by the theory of the French philosopher Paul Ricoeur. RESULTS: During participation in > C☺PD-Life≫ patients experienced an improvement in how to master their living with COPD. They felt invigorated by an interprofessional rehabilitation team to raise how to deal with physical, mental, social and relational challenges. Programme participation was experienced as surprisingly easy by the patients. CONCLUSIONS: The telerehabilitation solution > C☺PD-Life≫ provides benefits for COPD patients who report improved illness-mastering, attendance and outcome of rehabilitation, as well as enhanced physical and social activity. As an assistive technology intervention, > C☺PD-Life≫ appears to be a valuable addition to existing rehabilitation programmes. However, more knowledge is required to further understand the full-range capacity and impact of tele-based pulmonary rehabilitation.Implications for RehabilitationNew models of rehabilitation to patients with Chronic Obstructive Pulmonary Disease (COPD) is imperative for the development of more suitable health care support to these patients. > C☺PD-Life≫ is a twenty-six-long telerehabilitation intervention program for COPD patients, delivered by an interdisciplinary team collaborating between hospital and the municipality health care service.This paper aims to explore COPD patients' experiences on the mastering of their illness while participating in > C☺PD-Life≫.Patients report improved illness-mastering, attendance, and outcome of rehabilitation, as well as enhanced physical and social activity by participating in the program.As an assistive technology solution, > C☺PD-Life≫ is shown to provide the potential to expand equally assessable support in improving independence, functioning, and well-being to COPD patients.

Experiences in responders and non-responders to pulmonary rehabilitation among people with chronic obstructive pulmonary disease: a clinical study with convergent mixed analysis.

PURPOSE: This study aims to investigate the experienced and measured development in physical capacity in people with Chronic Obstructive Pulmonary Disease (COPD) undergoing a standard pulmonary rehabilitation programme with a focus on the diverging experiences of responders and non-responders. METHODS: Twenty-one participants in standard pulmonary rehabilitation were included in the study. We measured the participants' change in the six-minute walk test (6MWT) during rehabilitation participation. We investigated their experiences of the changes in their physical capacity by combined participant observations and interviews. A convergent mixed analysis was conducted of the coherent data. RESULTS: Standard pulmonary rehabilitation had a different physical impact on people with COPD. Responders were delighted by a positive physical change, which improved their daily functioning and capability of fulfilling personal priorities. However, non-responders experienced decreased capacity and a lack of trust in their future. All participants found it challenging to exercise and achieve sustainable exercise habits. CONCLUSION: In this qualitative study, we found that absence of expected improvement to pulmonary rehabilitation seems to confer distress and feelings of hopelessness. The achievement of sustainable change in daily exercise behaviour appears yet to be insufficient. Thus, new and more individualized models of physiotherapists' guidance in exercise are imperative.Implications for rehabilitationIt is vital to acknowledge differential response to people with the chronic obstructive pulmonary disease following eight-week standard pulmonary rehabilitation.Especially noteworthy feelings of distress and hopelessness are prominent to non-responders because of the absence of the promised improvements.Both responders and non-responders require intensive physiotherapist guidance to exercise.It is recommended to ensure individualised support to people with chronic obstructive pulmonary disease in rehabilitation programmes.

When life gives you no choice: Context of decision-making when offered an oncology clinical trial.

BACKGROUND: Patients with advanced cancer are faced with a wide variety of challenges and difficult treatment decisions made while in a vulnerable life-threatening situation, including decisions about clinical trial participation. Internationally, there is a great focus on shared decision-making as a way to help patients and healthcare professionals to make informed decisions together; nevertheless, research focusing on patient experiences shows that information about clinical trials is insufficient in supporting patients to make trial decisions in the context of their course of disease and managing life with advanced cancer. AIM: To explore where and how decisions about participation in oncology clinical trials are made and the role of the patients and healthcare professionals. METHODS: Participant observation was used as a qualitative research method to gain knowledge about decision-making in different clinical situations. Data were analysed using thematic analysis. RESULTS: Four themes were developed: (a) preformed decisions, (b) dissimilar perceptions of successful treatment, (c) cues and concerns stated by patients and (d) creating common ground. CONCLUSION: There are underexposed aspects to be aware of in the decision-making process for clinical trial participation. Preformed decisions made by the physicians before the encounter with patients seemed to narrow down the patients' options and could have benefited from including the patients' views. Cues and concerns stated by patients were often neglected. However, when physicians talked with the patients about truly difficult issues such as treatment expectations, hope and death, it led to another kind of conversation about treatment decisions involving the patients' preferences. IMPLICATIONS FOR PRACTICE: Awareness of preformed decisions and an increased focus on picking up cues and concerns about existential issues in the clinical encounter may improve the quality of the decisions and increase shared decision-making.

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.

A Preference-Sensitive Online Instrument to Support Shared Decision Making for Patients With Pelvic Organ Prolapse: A Pilot Multicenter Randomized Controlled Trial.

A preference-sensitive instrument for women with pelvic organ prolapse was developed to increase shared decision-making. This study aimed to assess the feasibility of a randomized controlled trial to measure the effectiveness of the instrument. A pilot randomized controlled trial was conducted at three Danish gynecological clinics to assess feasibility through recruitment rates, per-protocol use and women's perception of (1) support for decision-making, (2) shared decision-making (Shared Decision-Making Questionnaire), and (3) satisfaction with their decisions. In addition, a focus group interview with participating gynecologists (five gynecologists) was conducted. We invited 226 women and recruited 46 (20%). The most common reason (45%) for nonparticipation was overlooking the invitation in their online public mailbox. Shared Decision-Making Questionnaire showed high data completeness (96%) but indicated a ceiling effect. Women felt the developed instrument supported their decision-making and more so if it was used interactively during consultations. Despite finding the instrument generally useful, gynecologists tended to apply the instrument inconsistently and not per protocol (41%), and some used it as a template for all consultations. This pilot study indicates that recruitment methods, for a future randomized controlled trial, for example, nurse-led preconsultations, need reconsideration due to low recruitment rates and inefficient per-protocol use. In a future randomized controlled trial, cluster randomization should avoid the carryover effect bias.

Can patients' narratives in nursing enhance the healing process?

Although there is a growing acknowledgement of the potential of a more nuanced healthcare paradigm and practice, the discourses of health promotion-and with that nursing and other healthcare professionals' practice-still tend to focus on the medical diagnosis, disease and the rationale of biomedicine. There is a need for shifting to a human practice that draws on a broader perspective related to illness. This requires a transformation of practices which can be constructed within a narrative understanding. A narrative approach appreciates the importance of emotion and intersubjective relation in the telling and listening that occur in the clinical encounter. The essence of nursing lies in the creative imagination, the sensitive spirit and the intelligent understanding of the individuals' possibilities of becoming empowered in his or her own life. This entails that the focus of the use of patients' narratives is, ultimately, not the story itself, but the nurses' and other healthcare professionals' ability to support the patients in finding useful meaning in their stories. Herein, it is of particular importance to let the patients narrate about what is sparkling moments or events in the lived life. Stories with such focus can open up for patients' hopes and dreams, which gives inspiration for finding meaningful ways to cope in life empowering personal recovery. It is, therefore, crucial to transform clinical settings into places that acknowledge the need for imagination and creativity, aiming at creating the opportunity for sensibility and vision essential to encouraging a narrative approach and thereby the ability to reflect upon and promote a healing process.

The discursive transformation of grief throughout history.

In recent decades, the phenomenon of grief, when you lose a loved one, has been the subject of exploration and discussion among researchers. Because of this, prolonged grief is now recognized as a possible mental disorder as the latest version of the diagnosis manual; 'International Classification of Diseases' (ICD-11) being published in 2018 is featuring a new diagnosis called 'prolonged grief disorder'. The commencement of this new disorder indicates a shift in the way grief is being articulated why the notion of rupture from the French philosopher Michel Foucault is applied as a philosophical approach in this paper. A Foucault-inspired discourse analysis has been prepared and by considering the issue historically and tracing how the concept of grief has been articulated in different time periods throughout history, the aim is to map out the discursive transformation that has taken place and to gain insight into how the societal context has supported and enabled this transformation. This paper takes a historical look back from the 1800s to present and identifies when changes can be observed in the way grief is being articulated. These changes or ruptures are identified in the work of Søren Aabye Kierkegaard, Sigmund Freud and Margaret Stroebe & Henk Schut who all must be assumed to have contributed significantly to how grief is perceived in various historical time periods. The discourse analysis identifies how prominent thinkers have articulated grief in each period and how today's perception of grief, as a possible mental disorder, both relates to these prominent thinkers but also reflects dominant societal values and ideologies.

Undertaking responsibility and a new role as a relative: a qualitative focus group interview study.

BACKGROUND: Being a relative of a patient with oesophageal cancer can evoke strong emotions and uncertainty about the future. As a consequence of the treatment course for oesophageal cancer and an increase in outpatient treatment, relatives are becoming increasingly responsible for patients' physical and emotional care. There is a lack of research exploring relatives' experiences with illness, treatment and decision-making. AIMS AND OBJECTIVES: To explore relatives' experiences with illness, treatment of the patient and decision-making in the context of oesophageal cancer. DESIGN: A qualitative explorative design was chosen. METHODS: We conducted two focus group interviews with 11 relatives. The analysis was based on Ricoeur's theory of interpretation. RESULTS: Throughout illness and treatment, relatives faced the fear of loss, leading to distress and anxiety. Relatives were simultaneously taking responsibility and asserting a new role during treatment as they regarded treatment as a joint affair. Regarding decision-making, relatives positioned themselves on the sidelines, awaiting the authority of the patients and healthcare professionals to give them space for participation. CONCLUSION: Relatives of patients with oesophageal cancer undergoing treatment are suppressing their anxiety and doubt about the future. As they are undertaking responsibility during treatment, they are claiming control in new areas, which leads to changing roles within the family. However, they do not feel empowered in decision-making because they recognise patients' decision-making authority. This study highlights the complexity of balancing patients' authority with acknowledgement of relatives' role as active collaborators.

The Balance of Patient Involvement: Patients' and Health Professionals' Perspectives on Decision-Making in the Treatment of Advanced Prostate Cancer.

Research has shown that involving patients in decisions on treatment may have positive effects for patients. However, there are different understandings of what involving patients implies and different attitudes among physicians toward sharing decisions with patients. This study aimed to explore the attitude of patients with advanced prostate cancer to involvement in treatment decisions and physicians' and nurses' approach to patient involvement. Moreover, it aimed to explore whether the decision-making changes as the treatment course progresses. Data were collected through participant observations and interviews. It was found that treatment decisions are primarily considered as part of physicians' role. Physicians' attitudes to patient involvement in treatment decisions depended on the type of treatment. Among patients and health professionals, there was a lack of confidence in the ability of patients to participate in the decisions. Health professionals and patients have different attitudes toward patient involvement and different views on what it entails.

Personal recovery and depression, taking existential and social aspects into account: A struggle with institutional structures, loneliness and identity.

BACKGROUND: Although depression is one of the most studied mental illness phenomena, the studies attempt to understand depression as different phases, turning points and transitions, but depression has an existential and social resonance. There is progress to be made in seeking to understand how people experience, cope and process, living with depression. There is a need of supplementary and alternative approaches that goes beyond medicine and traditional treatment of psychiatric disabilities. AIM: The aim of this study was to explore perceptions and challenging issues related to living with depression, allowing the researchers to get a deeper understanding of existential and social aspects. METHOD: A phenomenological-hermeneutic study design was applied, based on the French philosopher Paul Ricoeur's theory of interpretation. Data were collected through observations and semi-structured interviews. FINDINGS: Several of the interviewees were lonely at home as well as at the hospital. This caused experiences of sheer isolation with feelings of sadness enhancing desperation concerning what to do with themselves. This could even cause physical feelings of pain. In different ways, the interviewees expressed how being with other people filled their lives with relationships and closeness. Health care professionals were focused on applying structure into the users' everyday life, shadowing the person's individuality, strengths and resources. The prioritizations between users and healthcare professionals were not always in concordance. The interviewees experienced recurrent situations where their authority and individuality were ignored or felt non-existent. CONCLUSION: Existential and social aspects are vital in regard to understanding people living with depression. However, personal recovery can be diminished by controlling structures and lack of a caring guidance, creating feelings of stigmatization missing out on autonomy, causing inner doubts. A recommendation is that we challenge institutional structures and accelerate education developing the healthcare professionals' empathic competences and ability to make wise judgments, empowering the users' autonomy.

Being a relative on the sideline to the patient with oesophageal cancer: a qualitative study across the treatment course.

BACKGROUND: Being a relative of patients with oesophageal cancer or cancer in the oesophageal junction is stressful, as the healthcare system often overlooks concerns about the future as well as the roles and needs of relatives. There is a lack of research addressing relatives' experiences, roles and needs for participation in decisions. AIMS AND OBJECTIVES: To explore relatives' experiences before the start of treatment and their subsequent roles and needs for participation in treatment decisions. DESIGN: A qualitative approach based on a phenomenological - hermeneutical methodology was used. METHODS: Data consisted of participant observations and semi-structured interviews with 19 relatives of patients with oesophageal cancer. We analysed data with inspiration from Ricœur's theory of interpretation. RESULTS: The relatives were fellow sufferers, experiencing uncertainties and fear for the future with the patients, but they were simultaneously a challenged anchor during a difficult time, actively involved in handling the diagnosis and the everyday life. The relatives were positioned on the sideline both by the professionals and by themselves; they took a passive and subordinate part in decisions. CONCLUSION: Relatives are central to cancer care and treatment. Adequate and timely information is imperative for relatives as well for patients in order to facilitate shared decision-making. We advocate for a new approach to relatives in order to prepare the relatives for their roles and support their individual needs but also to acknowledge relatives' knowledge about everyday life from the relatives' perspective.

Living in limbo while one's identity is changing: Patients' existential experiences 6 months after a kidney transplantation with a living donor.

AIM: To investigate patients' existential experiences in everyday life after a kidney transplantation with a living donor. DESIGN: A qualitative study anchored in a hermeneutic-phenomenological approach inspired by Ricoeur's theory of narrative and interpretation. METHOD: Eleven patient interviews were conducted approximately 6 months after a kidney transplantation with a living donor. The interviews were conducted between August 2017-May 2019. Analysis and interpretation are based on Ricoeur's theory of interpretation. RESULTS: Four themes were identified: Experiencing bodily vulnerability while getting back to life; Feeling guilt while experiencing gratitude; Living in limbo while one's identity is changing; and Facing the future with hope while having reservations. CONCLUSION: This study reveals that patients experience multifaceted existential challenges in their everyday lives during the transition of the kidney transplantation process. Post-surgery complications for donors lead to feelings of guilt in patients; plus, they must adapt to a new existence, including a new identity. The patients feel they are in limbo, as they experience their existence as uncertain and their identity as unknown. IMPACT: The study highlights a need for developing a rehabilitation programme to address the individual and various existential challenges faced by patients who need to undergo a kidney transplantation.

Pelvic organ prolapse and treatment decisions- developing an online preference-sensitive tool to support shared decisions.

BACKGROUND: Female patients with pelvic organ prolapse and clinicians need to take decisions regarding treatment that are often unpredictable in relation to how they impact the future everyday lives of the patients. This study formed the developmental phase of a larger study to develop and test an online tool to support shared decision-making. METHODS: Patients, health care professionals and other stakeholders participated in the development and evaluation process of this tool. The collected data was generated from observational studies, exploratory interviews with prompt cards and workshops with end users from four Danish gynecology outpatient clinics. RESULTS: Content analysis led to important themes. For the patients three themes emerged: 1) how the impact of symptoms on everyday life affected the need for relief, 2) their bodily perception and sex life and 3) their worries about the future. For clinicians the different symptoms and their severity was a main theme. CONCLUSIONS: This article provides an overall description and discussion of the development methodology. It demonstrates how user involvement informed the prototyping process and how patients' preferences were included in the final prototype. Whether the tool actually increases SDM, remains to be tested in a pilot feasibility study.

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.