Physicians' perceptions of patient participation and the involvement of family caregivers in the palliative care pathway.

INTRODUCTION: Patient participation is essential for quality palliative care, and physicians play a crucial role in promoting participation. This study explores physicians' perceptions of patients and family caregivers' involvement in the different phases of the palliative pathway and employs a qualitative design with thematic analysis and a hermeneutic approach. METHODS: A purposive sampling included physicians who worked in different phases of the palliative pathway. In-depth, semi-structured interviews were conducted with 13 physicians in Norway between May and June 2020. RESULTS: Three main themes illustrate physicians' perceptions of patients' and family caregivers' involvement: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision-making in the middle phase, and (3) family involvement in the terminal phase. CONCLUSION: The physicians perceived bereavement conversations as essential, particularly if the pathway had been challenging. They also perceived patient participation and family caregivers' involvement as contextual. The results reveal that participation differs across the different phases of the palliative pathway. This type of knowledge should be included in the education of health-care professionals. Future research should explore elements vital to successful patient participation and family involvement in the different phases of care. PATIENT OR PUBLIC CONTRIBUTIONS: Family caregivers were involved in a previous study through individual interviews. The same interview guide used for the family caregivers was used when interviewing the physicians. The family caregivers' contribution led to nuanced questions in the interviews with the physicians, questions leaning on their stories told.

Medical students' learning experience and participation in communities of practice at municipal emergency care units in the primary health care system: a qualitative study.

BACKGROUND: Medical education has been criticised for not adapting to changes in society, health care and technology. Internationally, it is necessary to strengthen primary health care services to accommodate the growing number of patients. In Norway, emergency care patients are increasingly treated in municipal emergency care units in the primary health care system. This study explores medical students' learning experience and how they participated in communities of practice at two municipal emergency care units in the primary health care system. METHODS: In this qualitative study, we collected data from March to May 2019 using semi-structured individual interviews and systematic observations of six ninth-semester medical students undergoing two-week clerkships at municipal emergency care units. The interview transcripts were thematically analysed with a social constructivist approach. A total of 102 systematic observations were used to triangulate the findings from the thematic analysis. RESULTS: Three themes illuminated what the medical students learned and how they participated in communities of practice: (i) They took responsibility for emergency care patients while participating in the physicians' community of practice and thus received intensive training in the role of a physician. (ii) They learned the physician's role in interprofessional collaboration. Collaborating with nursing students and nurses led to training in clinical procedures and insight into the nurses' role, work tasks, and community of practice. (iii) They gained in-depth knowledge through shared reflections when time was allocated for that purpose. Ethical and medical topics were elucidated from an interprofessional perspective when nursing students, nurses, and physicians participated. CONCLUSIONS: Our findings suggest that this was a form of clerkship in which medical students learned the physician's role by taking responsibility for emergency care patients and participating in multiple work tasks and clinical procedures associated with physicians' and nurses' communities of practice. Participating in an interprofessional community of practice for professional reflections contributed to in-depth knowledge of ethical and medical topics from the medical and nursing perspectives.

Nephrologists' experiences with patient participation when long-term dialysis is required.

BACKGROUND: For individuals in need of dialysis, patient participation is important when determining care goals and in decision making regarding dialysis modality. Nephrologists hold a key role in delivering evidence-based healthcare that integrates patient preferences and values throughout the trajectory, and their experiences with patient participation are important for improving health care. The aim of this study was to explore nephrologists' experiences with patient participation in different phases of the end-stage renal disease trajectory for working-age individuals who require dialysis. METHODS: This explorative study comprised interviews with ten nephrologists from four different dialysis units in Central Norway. We analysed the interviews by applying an interpretive phenomenological approach. RESULTS: Nephrologists had varied experiences with patient participation throughout the different phases of the treatment trajectory. During decision making on the dialysis modality, nephrologists emphasised patients' choices in two approaches. In the first approach, they expected patients to choose the modality based on the provided information, which could be actively steered. In the second approach, they recognised the patients' values and lifestyle preferences through shared decision-making. Within hospital haemodialysis, nephrologists considered patients' self-care activities equivalent to patient participation, seeing self-care as a source of patient empowerment. They identified divergent patient-professional values and organisational structures as barriers to patient participation. CONCLUSION: Our study shows that nephrologists have different approaches to patient participation in different phases of the end-stage renal disease trajectory. Individual understanding as well as organisational structures are important factors to address to increase patient participation in end-stage renal disease care. Shared decision making, in which patient values are balanced against biomedical treatment targets, allows for mutual agreement between patients and healthcare professionals concerning medical plans and minimises the potential for patient-professional tensions.

Nursing qualifications needed in municipal emergency inpatient units. A qualitative study.

BACKGROUND: Providing care to older individuals with complex needs and patients with chronic illness is a concern worldwide. In Norway, this situation led to the transfer of responsibility for care and treatment to the municipalities. Providing emergency care at the municipal level - thereby reducing the need for emergency hospital admissions - is part of the Coordination Reform in Norway. This reform from 2012 warrants a reconsideration of which nursing qualifications are needed in the municipalities. The aim of the study is to explore which professional qualifications nurses need to provide emergency care in municipal emergency inpatient units. METHOD: A qualitative design with a hermeneutic approach was employed. Interviewing physicians about nursing qualifications may be considered inappropriate. We believe that this is important for developing knowledge that can strengthen interprofessional cooperation in emergency situations. Three focus groups were conducted. Physicians with experience in municipal emergency inpatient units were interviewed. RESULTS: We synthesised three themes from the data: (1) broad medical knowledge; (2) advanced clinical skills; and (3) ethical qualifications and a holistic approach. The first theme is about knowledge, the second is about skills, and the third conveys the need for overall competence. CONCLUSIONS: Nurses working in municipal emergency inpatient units need advanced ethical qualifications, which integrate broad medical knowledge, advanced clinical skills and the ability to take a holistic approach. They have a considerable responsibility to work independently and safely in a setting where both the patient and the patient's family play important roles. Establishing arenas for collaborative practice between physicians and nurses on clinical issues may be a way of strengthening patient safety and nurses' clinical judgement.

Nurses' experiences of compassionate care in the palliative pathway.

AIMS AND OBJECTIVES: The aim was to explore how nurses experience compassionate care for patients with cancer and family caregivers in different phases of the palliative pathway. BACKGROUND: Compassion is fundamental to palliative care and viewed as a cornerstone of high-quality care provision. Healthcare authorities emphasize that patients should have the opportunity to stay at home for as long as possible. There are, however, care deficiencies in the palliative pathway. DESIGN: This study employed a qualitative design using focus groups and a hermeneutic approach. METHODS: Four focus groups with three to seven female nurses in each group were conducted in Mid-Norway in 2018. Nurses' ages ranged from 28-60 years (mean age = 45 years), and they were recruited through purposive sampling (N = 21). Compassionate care was chosen as the theoretical framework. Reporting followed the COREQ guidelines. RESULTS: Three themes expressing compassionate care related to different phases of the pathway were identified: (a) information and dialogue, (b) creating a space for dying and (c) family caregivers' acceptance of death. CONCLUSIONS: This study showed that it was crucial to create a space for dying, characterized by trust, collaboration, good relationships, empathy, attention, silence, caution, slowness, symptom relief and the absence of noise and conflict. RELEVANCE TO CLINICAL PRACTICE: The quality of compassion possessed by individual practitioners, as well as the overall design of the healthcare system, must be considered when creating compassionate care for patients and their family caregivers. Nursing educators and health authorities should pay attention to the development of compassion in education and practice. Further research should highlight patients' and family caregivers' experiences of compassionate care and determine how healthcare systems can support compassionate care.

Narratives of patient participation in haemodialysis.

AIM AND OBJECTIVE: To explore how working-age adults experience patient participation in hospital haemodialysis. BACKGROUND: End-stage kidney disease is a progressive, chronic condition imposing patients with high treatment burdens and low health-related quality of life. Patients face multiple medical decisions related to living with kidney failure. Given their frequent interaction with health services, patient participation may be of special value. DESIGN: Qualitative design with a narrative approach. METHODS: In 2018, eleven patients aged 35-64 years undergoing hospital haemodialysis participated in individual interviews. All interviews were analysed using a narrative approach. Reporting followed the Consolidated criteria for Reporting Qualitative Research guidelines. FINDINGS: The patients' narratives of participation comprised three themes following their healthcare trajectory: Informed, but not involved in treatment choices; Duality of care and control; and Frail trust reflecting collaborative deficiencies. The patients received good information about dialysis, but were not involved in choice of treatment modality. Professional work, as well as the nature of treatment, contributed to restricted patient autonomy. Patients' trust suffered from collaborative deficiency generating delays in their treatment trajectories, and patients extended their responsibility into the coordination of transitions as a way of coping with these issues. CONCLUSIONS: The study identified challenges related to patient involvement and interdisciplinary collaboration. Involving patients through dialogue and acknowledging their experiences, preferences and lifestyles may strengthen the mutual patient-professional understanding of treatment. Despite increased focus on seamless trajectories, patients face obstacles regarding interdisciplinary collaboration and coordination of health services. RELEVANCE TO CLINICAL PRACTICE: The findings indicate a want of individually customised care for people requiring dialysis. Patients need to be involved in the choice of treatment modality as well as decisions related to the current treatment. Information must include potential consequences of the different treatment modalities. Health services need to strengthen collaboration in order to secure treatment continuity and patient involvement.

In search of the changeable: An analysis of visual representations of nursing in Norwegian and Danish professional nursing journals, 1965-2016.

In this study, we demonstrate how perceptions of nursing are constructed in close connection with the development of the Nordic welfare states. Drawing on Gillian Rose's framework for analysing the social and political implications of visual materials, we analysed selected visual representations of nursing published in Danish and Norwegian professional nursing journals in the period 1965 to 2016. The analyses were conducted in an iterative process in three phases. First, we reviewed all visuals spanning the entire period to obtain an overview of developmental trends in the material. Second, selected visuals and associated captions were subjected to more thorough analysis. Third, we further examined and discussed the visuals in light of societal and political movements and ideologies in Danish and Norwegian healthcare policies over this period. Our analysis shows that visual representations of the nurse-patient relationship and of the patient's and the nurse's roles and responsibilities changed over this period and that the visualisations corresponded with and supported developments in the Danish and Norwegian welfare states as these first consolidated and then moved towards individualisation and the competition state. Our study demonstrates that nurses in these states are political actors implementing health policies embedded in various knowledge regimes.

Patients' narratives of their patient participation in the myocardial infarction pathway.

AIM: To explore how patients in areas without local percutaneous coronary intervention (PCI) facilities experience patient participation in different phases of the myocardial infarction pathway. BACKGROUND: Acute treatment of myocardial infarction often involves PCI. In Norway, this treatment is centralized at certain hospitals; thus, patients often require long-distance transportation and experience frequent hospital transfers. Short hospital stays, transfers between hospitals and the patient's emotional state pose challenges to promoting patient participation. DESIGN: A qualitative design with a narrative approach. METHODS: Participants were recruited through purposive sampling. Eight men and two women were interviewed in 2016. FINDINGS: Four themes related to the patients' experiences at the beginning, middle and end of the pathway were identified: (a) Lack of verbal communication in the acute phase; (b) trust in healthcare professionals and treatment; (c) lack of participation and coordination at discharge; and (d) shared decision-making in rehabilitation. The findings showed how the patients moved from a low level of patient participation in the acute phase to a high level of patient participation in the rehabilitation phase. CONCLUSION: This is the first study to explore patient participation in different phases of the myocardial infarction pathway. We argue that individual plans for information and patient participation are important to improve patient involvement in an earlier stage of the pathway. Further research from a healthcare professional perspective can be valuable to understand this topic. IMPACT: This study gives new insight that can be valuable for healthcare professionals in implementing patient participation throughout the pathway.

Patients' experiences from an education programme ahead of orthopaedic surgery - a qualitative study.

AIMS AND OBJECTIVES: The objective of this study was to investigate how patient education in a surgical department was experienced by patients who had undergone total knee arthroplasty or total hip arthroplasty. BACKGROUND: Total knee arthroplasty and total hip arthroplasty are two of the most common and clinically effective surgical treatments performed in the Western world. Patient education efforts related to these procedures have been studied, but usually only to evaluate clinical outcome and little in a patient perspective. DESIGN: The empirics consist of qualitative in-depth interviews with 11 patients admitted to the surgical department at a Norwegian hospital. The interviews were carried out in 2011. METHODS: The study has a qualitative design with a phenomenological approach. The data have been analysed through meaning condensation, in accordance with Amadeo Giorgi's four-step method. N = 11. RESULTS: The education programme made the patients feel mentally prepared for surgery and the postsurgical situation. Three themes were identified: (1) realistic information preparing for surgery, (2) involvement and sense of control and (3) trust in staff. CONCLUSION: A relationship seems to exist between how informed patients feel and how much they trust the department in which they are undergoing treatment. There may also be a relationship between a sense of control and trust. RELEVANCE TO CLINICAL PRACTICE: To build a trustful relationship between healthcare providers and patients, patient education both in groups and individually should be implemented, and be designed in a way that supports trust. Information should be realistic and accurate.

Emergency hospitalisation in six municipalities in the Sunnmøre district.

BACKGROUND: Providing better and more cost-efficient health services is a goal for health policy. It is seen as desirable to provide health services close to the patient's home. From 2016, all municipalities must provide emergency hospitalisation (EH). The objective of this study was to develop experience-based knowledge from medium-sized municipalities that operate such services without any inter-municipal collaboration. MATERIAL AND METHOD: Focus-group interviews with 25 health workers who are responsible for this service in six small and medium-sized municipalities in Western Norway were conducted in the autumn of 2013 and the spring of 2014. Additional information on bed utilisation was also collected. RESULTS: The informants reported that their municipalities had chosen emergency hospitalisation as a measure to reinforce the professional communities in the nursing homes. They described this as a patient-centred and flexible treatment option. In their opinion, the programme would help ensure competence enhancement in the municipalities. Bed utilisation increased from the introduction of EH until 31 August 2014. INTERPRETATION: The health workers reported that emergency hospitalisation in the municipality fulfilled key intentions of the Interaction Reform, in terms of providing treatment to patients locally and close to their homes.

The design of compassionate care.

AIMS AND OBJECTIVES: To investigate the tension between individual and organisational responses to contemporary demands for compassionate interactions in health care. BACKGROUND: Health care is often said to need more compassion among its practitioners. However, this represents a rather simplistic view of the issue, situating the problem with individual practitioners rather than focusing on the overall design of care and healthcare organisations, which have often adopted a production-line approach. DESIGN: This is a position paper informed by a narrative literature review. METHODS: A search of the PubMed, Science Direct and CINAHL databases for the terms compassion, care and design was conducted in the research literature published from 2000 through to mid-2013. RESULTS: There is a relatively large literature on compassion in health care, where authors discuss the value of imbuing a variety of aspects of health services with compassion including nurses, other practitioners and, ultimately, among patients. This contrasts with the rather limited attention that compassionate practice has received in healthcare curricula and the lack of attention to how compassion is informed by organisational structures and processes. We discuss how making the clinic more welcoming for patients and promoting bidirectional compassion and compassion formation in nursing education can be part of an overall approach to the design of compassionate care. CONCLUSIONS: We discuss a number of ways in which compassion can be enhanced through training, educational and organisational design, through exploiting the potential of brief opportunities for communication and through initiatives involving patients and service users, as well as practitioners and service leaders. RELEVANCE TO CLINICAL PRACTICE: The development of contemporary healthcare systems could usefully address the overall design of compassionate care rather than blame individual practitioners for a lack of compassion.

How do patients with exacerbated chronic obstructive pulmonary disease experience care in the intensive care unit?

The aim was to gain insight into how patients with advanced chronic obstructive pulmonary disease (COPD) experience care in the acute phase. The study has a qualitative design with a phenomenological approach. The empirics consist of qualitative in-depth interviews with ten patients admitted to the intensive care units in two Norwegian hospitals. The interviews were carried out from November 2009 to June 2011. The data have been analysed through meaning condensation, in accordance with Amadeo Giorgi's four-step method. Kari Martinsen's phenomenological philosophy of nursing has inspired the study. An essential structure of the patients' experiences of care in the intensive care unit by acute COPD-exacerbation may be described as: Feelings of being trapped in a life-threatening situation in which the care system assumes control over their lives. This experience is conditioned not only by the medical treatment, but also by the entire interaction with the caregivers. The essence of the phenomenon is presented through three themes which describe the patient's lived experience: preserving the breath of life, vulnerable interactions and opportunities for better health. Acute COPD-exacerbation is a traumatic experience and the patients become particularly vulnerable when they depend on others for breathing support. The phenomenological analysis shows that the patients experience good care during breath of life preservation when the care is performed in a way that gives patients more insight into their illness and gives new opportunities for the future.

Sky-High Safety? A Qualitative Study of Physicians' Experiences of Patient Safety in Norwegian Helicopter Emergency Services.

BACKGROUND: Patients treated and transported by Helicopter Emergency Medical Services (HEMS) are prone to both flight and medical hazards, but incident reporting differs substantially between flight organizations and health care, and the extent of patient safety incidents is still unclear. METHODS: A qualitative descriptive study based on in-depth interviews with 8 experienced Norwegian HEMS physicians from 4 different bases from February to July 2020 using inductive qualitative content analysis. The study objectives were to explore the physicians' experience with incident reporting and their perceived areas of risk in HEMS. RESULTS/FINDINGS: The HEMS physicians stated that the limited number of formal incident reports was due to the "nature of the HEMS missions" and because reports were mainly relevant when deviating from procedures, which are sparse in HEMS. The physicians preferred informal rather than formal incident reporting systems and reporting to a colleague rather than a superior. The reasons were ease of use, better feedback, and less fear of consequences. Their perceived areas of risk were related to all the phases of a HEMS mission: the physician as the team leader, medication errors, the handover process, and the helicopter as a work platform. CONCLUSIONS: The sparse, informal, and fragmented incident reporting provides a poor overview of patient safety risks in HEMS. Focusing on organizational factors and system responsibility and research on environmental and contextual factors are needed to further improve patient safety in HEMS.

Mapping interaction quality for nursing and medical students in primary care placement in municipal emergency care units: a systematic observational study.

Introduction: Primary care placement for nursing and medical students is vital for developing the competence to accommodate the increasing number of patients with multimorbid and complex conditions. Prior studies have suggested that interaction quality in primary care placement empowers learning. However, research mapping interaction quality in primary care placements in municipal emergency care units is lacking. This study aimed to systematically map interaction quality for nursing and medical students in primary care placement in two municipal emergency care units. Materials and methods: This study adopted a systematic descriptive observational design. Systematic observations (n = 201 cycles) of eight nursing students (n = 103 cycles) and six medical students (n = 98 cycles) were used to map interaction quality across six learning situations between March and May 2019. Observations were coded using the Classroom Assessment Scoring System-Secondary (CLASS-S). Data were analyzed using descriptive statistics and Spearman correlations. Results: Interaction quality is described in three domains: (I) emotional support, (II) framework for learning, and (III) instructional support, and the overall measure, student engagement. The results indicated middle-quality interactions in the emotional and instructional support domains and high quality in the framework for learning domain and student engagement. Correlations exhibited similar patterns and ranged from non-significant to strong correlations. Conclusion: The interaction qualities indicated a generally positive and supportive learning environment contributing to nursing and medical students' learning and active participation in work tasks related to their professional roles. Thus, this new form for primary care placement for nursing and medical students in the municipal emergency care units was found to be a positive learning arena. These results may enhance nursing and medical education programs in countries with similar health services and education. Health education, supervisors, peers, and others contributing to students' learning should recognize which interaction qualities may affect learning and how to improve quality, thus affecting supervisors' approach to training students. While the CLASS-S showed potential for mapping interaction qualities for nursing and medical students in primary care placement in municipal emergency care units, further studies are needed to validate the CLASS-S for use in clinical placement settings.

Intensive care unit nurses' perceptions of patient participation in the acute phase of chronic obstructive pulmonary disease exacerbation: an interview study.

AIM: To report a study conducted to explore intensive care unit nurses' perceptions of patient participation in the acute phase of chronic obstructive pulmonary disease exacerbation. BACKGROUND: An acute exacerbation is a life-threatening situation, which patients often consider to be extremely frightening. Healthcare personnel exercise considerable power in this situation, which challenges general professional notions of patient participation. DESIGN: Critical discourse analysis. METHODS: In the autumn of 2009, three focus group interviews with experienced intensive care nurses were conducted at two hospitals in western Norway. Two groups had six participants each, and one group had five (N = 17). The transcribed interviews were analysed by means of critical discourse analysis. FINDINGS: The intensive care nurses said that an exacerbation is often an extreme situation in which healthcare personnel are exercising a high degree of control and power over patients. Patient participation during exacerbation often takes the form of non-involvement. The participating nurses attached great importance to taking a sensitive approach when meeting patients. The nurses experienced challenging ethical dilemmas. CONCLUSION: This study shows that patient participation should not be understood in universal terms, but rather in relation to a specific setting and the interactions that occur in this setting. Healthcare personnel must develop skill, understanding, and competence to meet these challenging ethical dilemmas. A collaborative inter-professional approach between physicians and nurses is needed to meet the patients' demand for involvement.

Narratives of breathlessness in chronic obstructive pulmonary disease.

AIMS AND OBJECTIVES: To explore patient perceptions of chronic obstructive pulmonary disease exacerbation and the patients' experiences of their relations with health personnel during care and treatment. BACKGROUND: Patients suffering from acute exacerbation of chronic obstructive pulmonary disease often experience life-threatening situations and undergo noninvasive positive-pressure ventilation via bi-level positive airway pressure in a hospital setting. Theory on trust, which often overlaps with the issue of power, can shed light on patient's experiences during an acute exacerbation. DESIGN: Narrative research design was chosen. METHODS: Ten in-depth qualitative interviews (n = 10) were conducted with patients who had been admitted to two intensive care units in Western Norway during the autumn of 2009 and the spring of 2010. Narrative analysis and theories on trust and power were used to analyse the interviews. RESULTS: Because of their breathlessness, the patients perceived that they were completely dependent on others during the acute phase. Some stated that they had experienced an altered perception of reality and had not understood how serious their situation was. Although the patients trusted the health personnel in helping them breathe, they also told stories about care deficiencies and situations in which they felt neglected. CONCLUSIONS: This study shows that patients with an acute exacerbation of chronic obstructive pulmonary disease often feel wholly dependent on health personnel during the exacerbation and, as a result, experience extreme vulnerability. RELEVANCE TO CLINICAL PRACTICE: The findings give nurses insight into building trust and a good relationship between patient and caregiver during an acute exacerbation of chronic obstructive lung disease.

Physicians' narratives of communication with patients and their relatives in different phases of the palliative pathway.

OBJECTIVES: To explore physicians' experiences of the communication with patients and their relatives in the different phases of the palliative pathway. METHODS: Purposeful sampling was employed to recruit a total of 13 oncologists and general practitioners who engaged in palliative care. A qualitative study with a narrative approach was conducted. Interviews with physicians working in primary and specialist healthcare were conducted via Skype Business in the spring of 2020. The interview guide had open-ended questions with each interview lasting between 35 and 60 min. RESULTS: Communication between the physicians, their patients and their relatives was contextual and changed depending on the phase in the palliative pathway. In the first phase, physicians told us that patients and their relatives experienced an emotional shock. Transitioning from the curative to palliative phase was difficult, which emphasised the need for trust through communication. In the middle phase, they revealed that communication about the death process became the priority: what was probably going to happen, the family's role in what was going to happen and perhaps, depending on the illness, any medical decisions that needed to be made. It was important for the physicians to communicate information about the palliative pathway while providing the relatives with knowledge that facilitated any decision making. In the terminal phase, physicians employed a compassionate approach, as bereaved family members needed to process their feelings of guilt and grief. CONCLUSIONS: The study gives new insight into communication with patients and their relatives during different phases of the palliative pathway, from the physician's perspective. The findings may help physicians improve the quality of communication with patients and their relatives over these vulnerable pathways. The findings also have practical implications in training contexts. The study reveals ethical dilemmas in physicians' communication with patients and their relatives during a palliative pathway.

The next of kin of older people undergoing haemodialysis: a discursive perspective on perceptions of participation.

AIM: This paper is a report of a study conducted to explore how the family members of older people who will undergo haemodialysis treatment for the rest of their lives perceive participation. BACKGROUND: The rights of families to participate in treatment and health care are supported by international law, and by national law in Norway since 1999. METHOD: This study, which employed an explorative qualitative approach, was carried out in Norway in 2008. Data were derived from transcribed interviews with seven family members underwent critical discourse analysis. FINDINGS: Three discourse practices about the next of kin perception of participation were found: (1) to care and take control, (2) to struggle for involvement, and (3) to be forgotten and powerless. The next of kin said that they had no dialogue with the healthcare team, and some fought to be included in the decision-making process. CONCLUSION: The dominant part of the discourse as expressed by the next of kin seems to be a paternalistic ideology. Thus, finding ways to enable the next of kin to participate in the decision-making process seems to be a major challenge for the healthcare team in the dialysis units.

Perceptions of patient participation amongst elderly patients with end-stage renal disease in a dialysis unit.

AIM: A patient's right to influence treatment and health care has been guaranteed by Norwegian law since 1999. The aim of this study was to explore how elderly patients with end-stage renal disease who are undergoing treatment with haemodialysis for the rest of their lives perceive patient participation in a dialysis unit. METHODS: This study, which was inspired by critical discourse analysis, drew on data derived from transcribed interviews with 11 patients. FINDINGS: Two discourses related to patient participation were identified. The first and dominant discourse was called the health-care team's power and dominance. Both environmental conditions and the team's practice exercised power and control over the patients. The patients trusted the health-care team, but some felt powerless and were afraid of what might happen if they refused to follow the instructions. The health-care team owned the knowledge and decided what the patients needed to know. Most of all the patients wanted dialogue about the future. After years of treatment, patient identity seemed to be threatened by this situation. The second discourse is called the patients struggling for shared decision-making. Some patients struggled to be involved in decision-making about 'dry weight', diet, blood access and time of treatment when these factors threatened their well-being and the quality of their daily lives. CONCLUSIONS: The elderly patients' right to participate in their haemodialysis treatment did not seem to be well incorporated into the social practices of haemodialysis units. Changing the social practices in the dialysis units from a paternalistic ideology to an ideology of participation will require consideration of the context, the dialogue and the process of shared decision-making with the patient.

Nurses' perceptions of patient participation in hemodialysis treatment.

The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses' power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and the predominant discursive practice can be explained with an ideology of paternalism, in which the nurses used biomedical explanations and the ethical principle of benefice to justify their actions. The second can be explained with an ideology of participation, in which the nurses used ethical narratives as a way to let the patients participate in the treatment. The third seemed to involve autonomous decision-making and the ethical principle of autonomy for the next of kin in the difficult end-of-life decisions.