Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members (...) of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

Background: The nature of systemic lupus erythematosus (SLE) and the far-reaching unpleasant consequences of this disease and the treatments can put the dignity of the women with the disease at risk. Yet, the dignity of this population of patients has not been the subject of much research. Objective: The present study aims to define and describe the concept of dignity of women with SLE. Research design: This is a qualitative descriptive study in which data were collected via individual, in-depth, semi-structured (...) interviews. The collected data were analyzed using methods of content analysis in MAXQDA 2010. Participants and research context: In total, 29 individuals (14 patients, 8 family caregivers, and 7 nurses) were selected by purposeful sampling from the internal wards of a teaching hospital located in the south of Iran. The study was conducted between June 2023 and February 2024. Sampling continued until the data were saturated. Ethical considerations: The Institutional Review Board of the university has verified that the study complies with research ethics. Findings: Analysis of the data extracted from the interviews resulted in three themes: respect for identity, compassion in care and treatment, and fulfillment of support needs. Conclusions: The women with SLE who were surveyed in the present study needed to have their feminine identity and social identity respected and be comprehensively supported by their treatment team and family caregivers. In such a context, care characterized by compassion and empathy and treatment teams’ respectful and professional interactions with the patients contribute to maintaining the patients’ dignity. Nursing managers and staff can use the findings of the present study to create a supportive clinical environment in order to better maintain the dignity of women with SLE. (shrink)

Recent developments in novel therapies for neuromuscular diseases offer parents new perspectives on their affected children's future. This article examines how the emergence of new therapies impacts the lives of parents of children with Duchenne muscular dystrophy or spinal muscular atrophy type 2, two genetic neuromuscular disorders characterized by progressive muscle degeneration. Aiming for a first‐person perspective, fieldwork was conducted utilizing participant observation, semistructured interviews, and several internet sources. Six families with a total of 12 persons, all living in Denmark, (...) were included in the interviews. Two types of parents were identified who were at opposite ends in dealing with the new therapies—the cure optimists and the cure pragmatists. Different hopes resulted in different narratives for their children's futures. The article raises questions about how and when children with chronic diseases should be involved in their parent's hopes for a cure and highlights the dilemmas facing health professionals working in the field of children with chronic diseases for which the prospects of a cure are improving. We conclude that health professionals must find a way to carefully balance guidance and information about experimental medicines, including the fact that experimental medicine sometimes fails, does not work as well as hoped for, or does not become available, with sustaining parental hopes for their children's future. (shrink)

Background: Ethics is a fundamental part of health care professionals’ competence and one of the major quality factors in good nursing care. Research shows challenges in learning and applying ethics. Ethical Coffee Room (ECR) is an electronic platform, where the students, nurses and teachers discuss anonymously ethical issues during students’ clinical practice. ECR offers 1 credit (27 working hours) for the students. This work included reading theoretical material, contributions for discussion of ethical dilemmas and reflection of one’s own learning. Every (...) user – student, nurse supervisor or teacher – could choose her or his own pseudonym. Aim: The aim of this study was to describe how nursing students experience learning ethics with digital learning activity during clinical practice, how usable the Ethical Coffee Room platform is and how this learning activity should be developed further. Research design, participants and context: The study employed a qualitative descriptive design and was an EU project between Finland, Sweden and Latvia. In total, 34 second-year nursing students participated in the study. The data collection methods were semi-structured interviews and written comments in the discussion forum Ethical Coffee Room. The data were analysed using content analysis. Ethical considerations: Ethical approval and research permission were obtained from each partner organization, according to their national standards. Findings: The results are presented under three themes: positive learning experiences of Ethical Coffee Room, challenges in learning during Ethical Coffee Room and practical suggestions for future development of Ethical Coffee Room. The results showed that the Ethical Coffee Room was experienced as a novel type of learning activity and an interesting way to learn ethics. Discussion and conclusion: Ethical Coffee Room seems to be a promising learning activity enhancing students’ ethical competence in clinical practice. However, active participation of the mentor nurses and teachers is essential. Therefore, mentor nurses and teachers need in-depth knowledge of ethical theories and concepts and how to apply them in clinical context. (shrink)

Background: Patients and their caregivers are expected to take joint responsibility for reporting symptoms and seeking medical assistance, for example, by calling oncology emergency telephones or other helplines during a cancer trajectory. Research objective: The aim was to explore the meaning of responsibility as it appeared in patients’ or caregivers’ experiences of calling an oncological emergency telephone. Design, participants and context: Inspired by qualitative description and qualitative content analysis, a secondary analysis of data from interviews with 12 participants calling the (...) oncological emergency telephone at a Danish university hospital was performed. Ethical considerations: The project observes demands for safekeeping data and all regulations concerning research ethics in agreement with the Nordic Nurses Federation and the Danish Health Act. Findings: Two main themes emerged: (1) to act responsibly as a patient or caregiver was to ‘be watchful and alert’, ‘report symptoms the right way’ and ‘do crosschecking’ and (2) to deal with the burden of responsibility was to ‘feel safe when dealing with the burden of responsibility’ and ‘be relieved from the burden of responsibility’. Discussion: Too much responsibility and a potential imbalance between healthcare professionals’ expectations and callers’ knowledge and capacity to act may place additional burdens on the callers, which may be eased by person-centred care. Conclusion: The meaning of responsibility appeared in the participants’ capacity to act, where they observed, assessed and reported symptoms and controlled prescribed treatments as well as shared or handed over the responsibility to the healthcare providers. Thus, the analysis provided essential knowledge for healthcare professionals on how patients and caregivers handle this responsibility when faced with a cancer disease that is treated on an outpatient basis. (shrink)

The role of nurses in leading the design and delivery of primary health care services to address health inequities is growing in prominence, specifically in rural Australia. However, limited evidence exists to inform nurse‐led primary health care in this context. Based on a focus group with nursing executives and semi‐structured interviews with registered nurses we describe nurse experiences of leading the design of a primary health care service in rural Australia and nurse transition to and practice in this service. Nurse (...) experiences were analysed using reflexive thematic analysis. The study reveals the centrality of relational integration in service design and nurse acquisition of relational practice as it relates to nurse to care recipient and nurse to nurse relationships. Tensions between primary health care nurses and their peers, and resultant de‐valuing of primary health care practice, are described. The acquisition of nurse professional agency draws attention to investments required to position nurses to lead and sustain care innovations external to hospital settings. The authors propose that relational approaches may provide nurses with the opportunity to reframe their leadership and service contributions towards community literate primary health care provision and provide a pathway to professional emancipation from constrained practice expectations. (shrink)

Clinician-scientists play a valuable role in bridging the gap between patient care and clinical research. However, there are no clear guidelines that describe how to handle the day-to-day ethical and methodological questions that arise when navigating the competing responsibilities of practitioner and researcher—a situation that can easily leave the clinician-scientist confused and frustrated. This article outlines common ethical and methodological concerns for the clinician-scientist when developing, implementing, and analyzing research in practice, and offers practical suggestions to address these issues. This (...) paper will outline the role that reflexivity can play throughout the research process to assist the clinician-scientist in maintaining ethical and methodological rigor, as well as upholding the moral obligations of both practitioner and researcher. (shrink)

Background Individuals living with multimorbidity and/or mental health issues, low education, socioeconomic status, and polypharmacy are often called complex patients. The complexity of their health and social care needs can make them prone to disease burden and suffering. Therefore, they frequently access health care services to seek guidance for managing their illness and suffering. Aims The aim of this research was to describe the approaches used by nurses to alleviate the suffering of individuals with multimorbidity and complex needs in acute (...) care settings. Research Design A qualitative descriptive approach. Participants and Research Context Semi-structured interviews were conducted with 19 nurses working in general, medical-surgical, specialized, and intensive care settings across five hospitals in Pakistan. Reflexive thematic analysis was used for analysis. Ethical Considerations Ethical approval was obtained from the Ethical Committee of Al-Nafees Medical College Islamabad, Pakistan. Findings Four themes were generated: Deeper Exploration of Patients’ Health-Illness Situation and Complexity, Prioritizing Patient Psychosocial and Emotional Needs, Instilling Hope and Encouragement in Patients, and Creating a Comforting Environment to Foster Sharing of felt needs. Discussion Nurses emphasized the need of deeper inquiry into patients illness situation and complexity to discern the impact of determinants on their well-being and develop care plans that are tailored to address psychosocial, emotional, and physical suffering of this patient population. Conclusions Alleviation of patient suffering is integral to compassionate nursing care. Nurses use a multifaceted approach entailing sensitive understanding, recognizing sociocultural and structural determinants impact on patient situation, and individual and interdisciplinary altruistic actions to alleviate patient suffering. (shrink)