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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Challenges to cross-sectoral care experienced by professionals working with patients living with low back pain: a qualitative interview study.

BACKGROUND: While interdisciplinary, cross-sectoral collaboration promotes the effectiveness of rehabilitation programmes for persons with low back pain, challenges remain for this process. Few studies have explored challenges to cross-sectoral care as experienced by all the involved professionals across sectors during a course of treatment. The aim of this study was to explore challenges to cross-sectoral care as experienced by professionals involved in the course of treatment for patients with low back pain. METHOD: This semi-structured, qualitative interview study included 28 health care professionals and 8 social workers who interacted with patients with low back pain. A systematic text condensation method was used to analyse data. Nvivo was used to structure and thematise the interview data. RESULTS: Professionals expressed challenges in relation to a lack of collaboration, knowledge sharing and acknowledgement of one other and they appeared to differ in their approach to patients with pain or patients with limited function. Additional challenges included time constraints, availability and subjective approaches to managing guidelines for low back pain. A lack of a common information technology (IT) registration system and limited knowledge of the work of other professions disrupted knowledge sharing among sectors. DISCUSSION: The different approach to patients with pain or patients with limited function challenged mutual understanding and collaboration among professionals. The lack of mutual understanding and knowledge of each other's work appeared to create an environment of disrespect and distrust among professionals that generated feelings of a lack of acknowledgement from other health care professionals. CONCLUSION: To provide cross-sectoral care, we must ensure that professionals work together towards transparent and informed transitions from one sector to the next. This study contributes to the existing literature by presenting challenges to cross-sectoral care that are experienced by the diverse groups of professionals involved in a course of treatment for patients with low back pain.

Experiences and challenges to cross-sectoral care reported by patients with low back pain. A qualitative interview study.

BACKGROUND: Cross-sectoral care comprises interdisciplinary and coordinated efforts for patients with complex care needs involving various competencies and professions across the primary health care sector, hospital sector, and municipal services. Cross-sectoral care can increase the effectiveness of rehabilitation programmes, but the treatment courses often lack coherence. Establishing successful treatment pathways requires a better understanding of the health care challenges faced by patients with low back pain. The aim of this study was to explore how patients with low back pain experience cross-sectoral care. METHOD: A qualitative interview study including 25 patients with low back pain. Patients were recruited in connection with their appointment at the Spine Centre of Southern Denmark. Recruitment stopped when the interviews no longer added new knowledge to the subject. The data were analysed using a systematic text condensation approach. RESULTS: Patients with low back pain experienced cross-sectoral care to be fragmented, with episodes lacking collaboration, information, and acknowledgement of their problem. They desired recognition of having a serious back problem and of being more than the diagnosis itself. Patients found it hard to keep track of their course of treatment due to a perceived lack of organisational support and collaboration between professionals. The patients called for more information about the treatment plan and the reasons for further referral in order to better understand and manage their treatment. CONCLUSION: Patients' experiences indicate a need for a stronger person-centred approach in cross-sectoral care, in which the individual's experiences of living with low back pain are taken into account.

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.

Living in one's own world, while life goes on: Patients' experiences prior to a kidney transplantation with a living donor.

AIMS AND OBJECTIVES: To investigate patients' existential experiences in everyday life prior to a kidney transplantation with a living donor. BACKGROUND: Kidney transplantation is a well-established treatment for patients with end-stage kidney disease. The prevalence of patients living with end-stage renal disease is increasing. Simultaneously, kidney transplantations with a living donor are increasing. However, patients experience challenging existential aspects concerning kidney transplantation. DESIGN: A qualitative study with a hermeneutic-phenomenological approach inspired by Ricoeur was chosen. METHODS: Fourteen interviews with patients living with end-stage kidney disease were conducted 7-14 days before a planned kidney transplantation with a living donor. Analysis and interpretation were based on Ricoeur's theory of interpretation. We applied the Criteria for Reporting Qualitative Research (see Appendix S1). RESULTS: Four themes were identified: living with subjective feelings of illness while objectifying the body; living in one's own world while the world outside goes on; feeling grateful while being concerned for the donor; and hoping for the best, while preparing for the worst. CONCLUSION: Patients' existential challenges are multifaceted. Patients articulate their kidney function in numeric terms, trying to make the invisible visible for themselves and others. Sustaining normality becomes important for patients, and the waiting time from donor evaluation to transplantation triggers excitement, hope and frustration. RELEVANCE TO CLINICAL PRACTICE: The results increase insights into individuals' existential experiences in their everyday lives. Hereby, the results articulate the need for support from health professionals prior to a kidney transplantation.

No time for reflection: Patient experiences with treatment-related decision-making in advanced prostate cancer.

BACKGROUND: The rationale of the study was the predominant understanding that patient involvement in treatment-related decision-making is essential and that communication with cancer patients can affect their quality of life, satisfaction with care, and psychosocial and medical outcomes positively. AIM: This study explored how patients with advanced prostate cancer experience the communication with health professionals and their experiences of how and by whom treatment-related decisions were made. METHODS: A phenomenological-hermeneutic research design was applied, and data were collected using qualitative interviews supplemented with participant observations in a urological outpatient clinic at a regional hospital in Denmark. Thirteen patients participated. Data were analysed using Ricoeur's theory of interpretation. FINDINGS: The patients experienced the course as being routine and that decisions related to treatment were made in advance. Three themes were identified: (1) Fast track diagnosing and treatment, (2) Off course I should have this treatment, and (3) They don't ask about existential issues. CONCLUSION: The study concluded that patients experienced communication primarily revolved around disease- and treatment-related issues and that it was characterised as efficient and straightforward, but insufficient. The patients experienced that the doctors made treatment-related decisions without involving them.

Ricoeur's narrative philosophy: A source of inspiration in critical hermeneutic health research.

Patient-centred care has gained ground in health service following a health policy initiative aimed at changing the paternalistic culture towards one with more patient involvement. Development of knowledge relating to people's lived experiences of illness is important in this context. Literature in the field of health science describes methods for exploring what is at stake for people affected by illness, and the French philosopher Paul Ricoeur has been a significant source of inspiration. Especially, Ricoeur's interpretation theory has been construed and applied in different, often schematic, methodological variations, whereas his narrative philosophy is a little used source of inspiration. Health science has been characterized by a biomedical awareness of method and the idea that there is a direct and immediate path to patients' experiences, a viewpoint that can be traced back to Descartes and the philosophy of subjectivism. Opposed to Descartes, Ricoeur says that we are already embedded in a world of traditions and meanings over which we have no control. According to Ricoeur, we leave traces when we express ourselves, and traces are formed by the world of meanings and traditions to which we belong. Often, the sense in the traces is hidden, making it impossible to directly understand individual's experiences. Reflection on an individual's lived experiences must take place via the narratives in which the individual expresses themselves. The centrepiece of Ricoeur's narrative philosophy is the threefold mimesis, which is an approach to understanding the meaning of peoples' lived experiences. The philosophical hermeneutics of Gadamer plays an important role in Ricoeur's theory of interpretation, although he has criticized Gadamer for failing to include one dimension in his philosophy; he finds this dimension in Habermas' ideology critique. Ricoeur's ideology critique is absent in health science research, which is why it has been made a focal point in this article.

What matters in clinical trial decision-making: a systematic review of interviews exploring cancer patients' experiences.

BACKGROUND: Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life-prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. AIM: To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process. METHOD: A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. RESULTS: Eleven full-text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment-related decisions close to the end of life? This review has shown that existential matters are important in the decision-making and that addressing these might be of great importance in medical decision-making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. CONCLUSION: This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients' decision-making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals' experiences when going in depth with decision-making, with a focus on the existential matters and uncertainties of the health care professionals.

The existential experience of everyday life with systemic lupus erythematosus.

AIM: To explore from the perspective of women the nature of basic existential conditions while living with systemic lupus erythematosus. BACKGROUND: Systemic lupus erythematosus has an unpredictable disease course and is documented to cause an existential rearrangement of life. The significance of changes in existential conditions and related experiences are unclear in the context of nursing and women with systemic lupus erythematosus. DESIGN: A qualitative design guided by Van Manen's hermeneutic-phenomenological methodology. METHOD: Individual in-depth interviews with 15 women diagnosed with systemic lupus erythematosus and of various ages, disease durations and severities were undertaken from September 2013 - October 2015. Data were analysed following van Manen's phenomenological approach and using drawing as an interpretive tool. FINDINGS: The main existential experience was interpreted as a person "moving with the waves of systemic lupus erythematosus" constituted by the themes "oscillating between presence and absence of systemic lupus erythematosus," "recognizing space and bodily possibilities and limitations" and "being enriched through relationships and activities." When systemic lupus erythematosus was flaring, well-being was threatened and a laborious time to escape the feeling of a setback-in-life persisted long after the disease was medically under control. CONCLUSION: Daily life with systemic lupus erythematosus is conditioned by a prominent need to be in existential motion, related to the absence and presence of systemic lupus erythematosus. The experience of a setback-in-life by illness might challenge well-being and indicates that periods of disease flares or disturbing symptoms are critical time points to provide support.