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Background: Shared responsibility is an essential part of family-centred care and it characterizes the relationship between parents and healthcare professionals. Despite this, little is known about their shared responsibility for decision-making in neonatal intensive care units. Aim: The aim of this scoping review was to identify previous studies on the subject and to summarize the knowledge that has been published so far. Method: The review was conducted using electronic searches in the CINAHL, PubMed, Scopus and PsycINFO databases and manual searches of the reference lists of the selected papers. The searches were limited to peer-reviewed papers that had been published in English from 2010 to September 2021. The data were selected based on inclusion and exclusion criteria and the findings were inductively summarized. We identified eight papers that met the inclusion criteria. Ethical considerations: The scoping review was conducted according to good scientific practice by respecting authorship and reporting the study processes accurately, honestly and transparently. Results: The results showed that shared responsibility for decision-making was based on the parents' intentions, but the degree to which they were willing to take responsibility varied. The facilitating and inhibiting factors for shared responsibility for decision-making were related to the communication between parents and professionals. The impact was related to the parents' emotions. Conclusion: It is essential that parents and professionals negotiate how both parties will contribute to their shared responsibility for decision-making. This will enable them to reach a mutual understanding of what is in the infants' best interests and to mitigate the emotional burden of decisions in neonatal intensive care units. More research is needed to clarify the concept of shared responsibility for decision-making in this intensive care context. [ABSTRACT FROM AUTHOR]

Introduction: Dignity is one of the most important values sensitively perceived by patients in nursing care. Older patients have been identified as having a high risk of losing their dignity in institutional care. To promote optimum nursing care, a deeper insight into the problem of older patients' dignity is needed. Aim: The aim was to identify, analyse and synthesise the qualitative evidence of dignity views and factors affecting it from the nurses' and older patients' perspective in the context of nursing care and to compare synthesised finding from the both perspective. Methods: A literature review of qualitative evidence was chosen as a study design. The ENTREQ statement was implemented to enhance transparency. The CASP – Qualitative checklist and the thematic synthesis for synthesised findings were used. The electronic databases Academic Search Complete, CINAHL, Health Source: Nursing/Academic Edition, MEDLINE and PROQUEST were used to gather information for qualitative studies. Results: A total of 306 papers were retrieved. Fourteen qualitative studies met the inclusion criteria and were included in the review after methodological quality assessment using CASP. Four main themes of dignity from nurses' perspective were synthesised: seeing the patient as a unique person, communication and privacy, involving the patient, and working culture and environment. From the patients' perspective, six main themes were synthesised: autonomy and control, privacy, relationships, care and comfort, communication and identity. The comparison shows that the key difference is that older patients highlighted the theme relationships and nurses underlined the theme working culture and environment. Conclusion: The model structures of the older patients' dignity from both the nurses' and patients' perspectives support the idea of a multidimensional structure of human dignity. The resulting model might be used in a nursing self-reflection, in the management of the institutions providing all-day care for the older people and in the education and practice. [ABSTRACT FROM AUTHOR]

Background: Advance care planning (ACP) is a process in which adults engage in an ongoing dialogue about future medical treatment and care. Though ACP is recommended to improve the quality of end-of-life care, the details of the dialogue experience in ACP are unknown. Objective: To explore participants' experiences of dialogue in an ACP educational program that encouraged them to discuss the value of a way of life. Research design: This qualitative descriptive study used the focus group interview method. Data were analyzed using qualitative content analysis. Participants and research context: A dialogue-based ACP educational program was conducted in four regions in Japan for local citizens to discuss the value of their way of life. A total of 66 individuals (mean age = 55.5 ± 17.2 years; 50 women and 16 men) participated in focus group interviews. Ethical considerations: This study was approved by the Ethical Review Committee of Tokyo Women's Medical University (no. 4723) and Kyoto University (no. R2099). Findings: Five main themes were extracted: discussing one's thoughts with others in a considerate manner, reflecting on one's way of life through others, feeling a sense of connection with others through storytelling, realizing the difficulties of talking about "what if" topics, and turning one's eyes toward the future through the dialogue. These themes were interrelated and illustrated the complexity of the experience of discussing values. Conclusions: The results suggest that dialogue in ACP is useful in clarifying values. They also indicated the need for dealing with the ethical challenges of discussing value and the importance of caring for the interlocutor to have a safe dialogue. In the ACP process, safety in dialogue may improve readiness in ACP, and health practitioners who support ACP need to address the ethical challenges entailing dialogue about values. [ABSTRACT FROM AUTHOR]

Background: Ethical issues are increasingly being reported by care-providers; however, little is known about the nature of these issues within the nursing home. Ethical issues are unavoidable in healthcare and can result in opportunities for improving work and care conditions; however, they are also associated with detrimental outcomes including staff burnout and moral distress. Objectives: The purpose of this review was to identify prior research which focuses on ethical issues in the nursing home and to explore staffs’ experiences of ethical issues. Methods: Using a systematic approach based on Aveyard (2014), a literature review was conducted which focused on ethical and moral issues, nurses and nursing assistants, and the nursing home. Findings: The most salient themes identified in the review included clashing ethical principles, issues related to communication, lack of resources and quality of care provision. The review also identified solutions for overcoming the ethical issues that were identified and revealed the definitional challenges that permeate this area of work. Conclusions: The review highlighted a need for improved ethics education for care-providers. [ABSTRACT FROM AUTHOR]

Aim: To examine interprofessional healthcare professionals' perceptions of triggers and root causes of moral distress. Design: Qualitative description of open-text comments written on the Moral Distress Scale–Revised survey. Methods: A subset of interprofessional providers from a parent study provided open-text comments that originated from four areas of the Moral Distress Scale–Revised, including the margins of the 21-item questionnaire, the designated open-text section, shared perceptions of team communication and dynamics affecting moral distress, and the section addressing an intent to leave a clinical position because of moral distress. Open-text comments were captured, coded, and divided into meaning units and themes using systematic text condensation. Participants: Twenty-eight of the 223 parent study participants completing the Moral Distress Scale–Revised shared comments on situations contributing to moral distress. Results: All 28 participants working in the four medical center intensive care units reported feelings of moral distress. Feelings of moral distress were associated with professional anguish over patient care decisions, team, and system-level factors. Professional-level contributors reflected clinician concerns of continuing life support measures perceived not in the patient's best interest. Team and unit-level factors were related to poor communication, bullying, and a lack of collegial collaboration. System-level factors included clinicians feeling unsupported by senior administration and institutional culpability as a result of healthcare processes and system constraints impeding reliable patient care delivery. Ethical considerations: Approval was obtained from the Institutional Review Board (IRB) of the University of Texas Health IRB and the organization in which the study was conducted. Conclusion: Moral distress was associated with feelings of anguish, professional intimidation, and organizational factors that impacted the delivery of ethically based patient care. Participants expressed a sense of awareness that they may experience ethical dilemmas as a consequence of the changing reality of providing healthcare within complex healthcare systems. Strategies to combat moral distress should target team and system interventions designed to improve interprofessional collaboration and support professional ethical values and moral commitments of all healthcare providers. [ABSTRACT FROM AUTHOR]

Background: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life. Methods: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241. Ethical Considerations: Ethical approval is not needed as it is a systematic review of published literature. Results: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results. Conclusion: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services. [ABSTRACT FROM AUTHOR]

Background: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. Objective: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. Design and methods: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. Ethical considerations: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. Findings: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. Discussion: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. Conclusion: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue. [ABSTRACT FROM AUTHOR]

Background: Despite the growing importance of spiritual care, the delivery of spiritual care is still an area of disagreement among healthcare providers. Objective: To develop a grounded theory about spiritual care delivery based on Iranian nurses' perceptions and experiences. A grounded theory approach: A qualitative study using the grounded theory approach. Participants and research context: Data were collected through holding 27 interviews with 25 participants (17 staff nurses, 3 physicians, 3 patients, 1 family member, and 1 nurse assistant). The study setting was the Imam Khomeini Hospital Complex. Sampling was started purposively and continued theoretically. Data analysis was performed by the method proposed by Strauss and Corbin. Ethical consideration: The study was approved by the Ethics Committee of Tarbiat Modares University and the agreement of the administrators of the study setting was got before starting the study. Results: The core category of the study was "Trust building" which reflected the nature of spiritual care delivery by nurses. Trust building was the result of eight main categories or strategies including creating a positive mentality at hospital admission, understanding patients in care circumstances, having a caring presence, adhering to care ethics, developing meaningful relationships, promoting positive thinking and energy, establishing effective communication with patients, and attempting to create a safe therapeutic environment. Poor interprofessional coordination negatively affected this process while living toward developing greater cognizance of divinity and adhering to the principles of professional ethics facilitated it. The outcome of the process was to gain a sense of partial psychological security. Conclusion: The "Trust building" theory can be used as a guide for describing and expanding nurses' roles in spiritual care delivery, developing care documentation systems and clinical guidelines, and planning educational programs for nursing students and staff nurses. [ABSTRACT FROM AUTHOR]

Background: The importance of trust between patients and healthcare personnel is emphasised in nurses' and physicians' ethical codes. Trust is crucial for an effective healthcare personnel-patient relationship and thus for treatment and treatment outcomes. Cultural and linguistic differences may make building a trusting and positive relationship with ethnic minority patients particularly challenging. Although there is a great deal of research on cultural competence, there is a conspicuous lack of focus on the concepts of trust and distrust concerning ethnic minority patients, particularly in relation to the concept of 'othering'. Aim: To study which factors help build trust or create distrust in encounters between healthcare professionals and hospitalised ethnic minority patients, as well as study the dynamic complexities inherent within the process of 'othering'. Research design: Qualitative design, in-depth interviews and hermeneutic analysis. Participants and research context: The interviewees were 10 immigrant patients (six women and four men -eight Asians, two Africans -ages 32-85 years) recruited from a south-eastern Norwegian hospital. Ethical considerations: Study approval was obtained from the hospital's Privacy Ombudsman for Research and the hospital's leadership. Participation was voluntary and participants signed an informed consent form. Conclusion: Distrust and othering may be caused by differences in belief systems, values, perceptions, expectations, and style of expression and behaviour. Othering is a reciprocal phenomenon in minority ethnic patient-healthcare personnel encounters, and it influences trust building negatively. Besides demonstrating general professional skill and competence, healthcare personnel require cultural competence to create trust. [ABSTRACT FROM AUTHOR]

Background: Despite their negative consequences, evidence shows that futile medical treatments are still being provided, particularly to terminally ill patients. Uncovering the reasons behind providing such treatments in different religious and sociocultural contexts can create a better understanding of medical futility and help manage it effectively. Research objectives: This study was undertaken to explore Iranian nurses' and physicians' perceptions of the reasons behind providing futile medical treatments. Research design: This was a qualitative exploratory study. Study data were gathered through conducting in-depth semi-structured personal interviews and analyzed using the conventional content analysis method. Participants and research context: Twenty-one nurses and nine medical specialists were recruited purposively from four teaching hospitals affiliated to Tehran University of Medical Sciences. Ethical considerations: This study was approved by the Nursing and Midwifery Research Center and the Research Ethics Committee of Tehran University of Medical Sciences. All participants gave informed consent for the research and that their anonymity was preserved. Findings: The main theme of the study was ''having an obligation to provide medical treatments despite knowing their futility.'' This theme consisted of three main categories including patients' and family members' request for continuing life-sustaining treatments, healthcare professionals' personal motives, and organizational atmosphere and structure. Discussion and conclusion: Different personal and organizational factors contribute to providing futile medical treatments. Promoting the structure and the function of hospital ethics committees, establishing and developing home care facilities, increasing the number of palliative care centers and hospices, and educating healthcare professionals, patients, and family members about the services and the benefits of such centers can facilitate making wise decisions about continuing or discontinuing treatments which have been labeled as futile. [ABSTRACT FROM AUTHOR]

Background: How well ethical concerns are handled in healthcare is influenced by the ethical climate of the workplace, which in this study is described as workplace factors that contribute to healthcare professionals’ ability to identify and deal with ethical issues in order to provide the patient with ethically good care. Objectives: The overall aim of the study was to describe perceptions of the paediatric hospital ethical climate among healthcare professionals who treat/care for children with cancer. Research design: Data were collected using the Hospital Ethical Climate Survey developed by Olsson as a separate section in a questionnaire. Descriptive statistics were used to analyse perceptions of the ethical climate. Participants and research context: Physicians, nurses and nurse-aides (n = 89) from three paediatric units participated in this study: haematology/oncology, chronic diseases and neurology. Ethical considerations: The study was approved by the regional ethical review board. Findings: Different perceptions of the ethical climate were rated as positive or negative/neutral. Nurses’ ratings were less positive than physicians on all items. One-third of the participants perceived that they were able to practice ethically good care as they believed it should be practised. Discussion: Differences in professional roles, involving more or less power and influence, might explain why physicians and nurses rated items differently. A positive perception of the possibility to practice ethically good care seems to be related to inter-professional trust and listening to guardians/parents. A negative/neutral perception of the possibility to practice ethically good care appears to be influenced by experiences of ethical conflicts as well as a lack of ethical support, for example, time for reflection and discussion. Conclusion: The two-thirds of participants who had a negative/neutral perception of the possibility to practice ethically good care are at risk of developing moral stress. Clinical ethics support needs to be implemented in care where important values are at stake. [ABSTRACT FROM AUTHOR]

Background: In order to protect the autonomy of human subjects, we need to take their culture into account when we are obtaining informed consent. Objective and research design: This study describes the cultural aspects related to informed consent in health research and is based on electronic searches that were conducted using the Scopus, PubMed, CINAHL, and Cochrane databases published between 2000 and 2013. A total of 25 articles were selected. Findings: Our findings indicate that cultural perspectives relating to the informed consent process are essential during the whole research process and particularly crucial in the planning phase of a study. Our study indicates that appropriate communication between different stakeholders plays a vital role in cultural understanding. Discussion and conclusion: The researchers’ awareness of cultural differences and their ability to work in a culturally sensitive way are key factors in improving study participation and retention in a multicultural context. Taking cultural aspects into account during the whole research process improves the quality of research. [ABSTRACT FROM AUTHOR]

The article presents a study which reviews the role of district nurses in advocating the choice of a patient to live and die at home which is supported by palliative care policy in rural Australia. It looks at the scope of the empirical literature available to the impact of this advocacy in the quality of end-of-life care. It also suggests that advocacy could be affected by emotional relational burden for the nursing-patient relationship, medicalisation and under-resourcing.