Background: Research concerning relatives’ participation in the everyday care related to persons living in special care units for persons with dementia is limited. Research questions: To examine relatives’ participation in their near one’s everyday care, the level of burden experienced and important factors for participation, in this special context. Design: The study had a cross-sectional design, and data collection was carried out by means of a study-specific questionnaire. Participants and context: A total of 233 relatives from 23 different special care (...) units participated. Ethical consideration: The study was approved by the Norwegian Social Science Data Services. Results: A great majority of relatives reported that they visited weekly and were the resident’s spokesperson, but seldom really participated in decisions concerning their everyday care. Participation was seldom reported as a burden. Discussion: This study indicated that relatives were able to make a difference to their near one’s everyday life and ensure quality of care based on their biographical expertise, intimate knowledge about and emotional bond with the resident. Since knowing the resident is a prerequisite for providing individualised care that is in line with the resident’s preferences, information concerning these issues is of utmost importance. Conclusion: This study prompts reflection about what it is to be a spokesperson and whether everyday care is neglected in this role. Even though relatives were satisfied with the care provided, half of them perceived their participation as crucial for the resident’s well-being. This indicated that relatives were able to offer important extras due to their biographical expertise, intimate knowledge about and emotional bond with the resident. Good routines securing that written information about the residents’ life history and preferences is available and used should be implemented in practice. (shrink)

Background In nursing homes, residents’ relatives represent important sources of support for nurses. However, in the heightened stress of emergency situations, interaction between nurses and relatives can raise ethical challenges. Research objectives The present analysis aimed at elaborating a typology of nurses’ experience of ethical support and challenges in their interaction with relatives in emergency situations. Research design Thirty-three semi-structured interviews and six focus groups were conducted with nurses from different nursing homes in Germany. Data were analysed according to Mayring’s (...) method of qualitative content analysis. Participants and research context Participants were licensed nurses working in nursing homes. Ethical considerations Ethical approval was granted by Ostfalia University of Applied Sciences (02.07.2020) and the Ethics Committee of Hannover Medical School (Nr. 8866_BO_K_2020; 27.01.2020). Interviewees were anonymised and focus group were pseudonymised during transcription. All participants provided written consent. Findings/results In emergency situations, relatives can represent important sources of support for nurses. However, they may also give rise to different challenges, relating to four ethical conflicts: (1) the challenge of meeting the information needs of relatives while providing appropriate care to all residents; (2) the challenge of managing relatives’ demands for hospitalisation when hospitalisation is not deemed necessary by nurses; (3) the challenge of managing relatives’ demands for lifesaving treatment when such treatment contradicts the will of the resident; and (4) the challenge of attempting to initiate hospitalisation when relatives oppose this course of action. Several external factors make these conflicts especially challenging for nurses: fear of legal consequences, a low staffing ratio, and a lack of qualified nursing staff. Conclusions Conflict between nurses and relatives typically revolves around hospitalisation and the initiation of lifesaving treatment. Whether nurses perceive interaction with relatives as supportive or conflictual essentially depends on the quality of the relationship, which may be negatively influenced by a number of external factors. (shrink)

Many of the elderly in nursing homes are very ill and have a reduced quality of life. Life expectancy is often hard to predict. Decisions about life-prolonging treatment should be based on a professional assessment of the patient’s best interest, assessment of capacity to consent, and on the patient’s own wishes. The purpose of this study was to investigate and compare how these types of decisions were made in nursing homes and in hospital wards. Using a questionnaire, we studied the (...) decision-making process for 299 nursing home patients who were treated for dehydration using intravenous fluids, or for bacterial infections using intravenous antibiotics. We compared the 215 patients treated in nursing homes to the 84 nursing home patients treated in the hospital. The patients’ capacity to consent was considered prior to treatment in 197 of the patients treated in nursing homes and 56 of the patients treated in hospitals. The answers indicate that capacity to consent can be difficult to assess. Patients that were considered capable to consent, were more often involved in the decision-making in nursing homes than in hospital. Next of kin and other health personnel were also more rarely involved when the nursing home patient was treated in hospital. Whether advance care planning had been carried out, was more often unknown in the hospital. Hospital doctors expressed more doubt about the decision to admit the patient to the hospital than about the treatment itself. This study indicates a potential for improvement in decision-making processes in general, and in particular when nursing home patients are treated in a hospital ward. The findings corroborate that nursing home patients should be treated locally if adequate health care and treatment is available. The communication between the different levels of health care when hospitalization is necessary, must be better. ClinicalTrials. gov NCT01023763 [The registration was delayed one month after study onset due to practical reasons]. (shrink)

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. (shrink)

Background: Palliative care is acknowledged as an appropriate approach to support older people in nursing homes. Ethical issues arise from many aspects of palliative care provision in nursing homes; however, they have not been investigated in this context. Aim: To explore the ethical issues associated with palliative care in nursing homes in the United Kingdom. Design: Exploratory, sequential, mixed-methods design. Methods: Semi-structured interviews with 13 registered nurses and 10 healthcare assistants (HCAs) working in 13 nursing homes in the United Kingdom (...) were used to explore ethical issues in palliative care. The ‘Ethical Issues in Palliative Care for Nursing Homes’ instrument was used to measure the frequency and level of distress arising from ethical issues through a cross-sectional survey with 69 registered nurses and 129 healthcare assistants. Data collection occurred between December 2014 and November 2015. Ethical considerations: Ethical approval was granted by Queen’s University’s School of Nursing and Midwifery Research Ethics Committee and governance sought from each nursing home’s manager. Findings: The interviews revealed three themes: ethical issues in practice; relational issues; and organisational issues. No significant differences between registered nurses and healthcare assistants were evident, confirming the patterns emerging from the interviews. Relational issues, primarily issues with residents and families, occurred most frequently and caused greater distress. Conclusion: The shared environment is key in the experience of ethical issues; therefore, multidisciplinary education is needed for ethical decision making in palliative care. Addressing staff knowledge and service organisation may reduce ethical issues locally and provide a benchmark for global change. (shrink)

BackgroundEthically challenging critical events and decisions are common in nursing homes. This paper presents nursing home doctors’ descriptions of how they include the patient and next of kin in end-of-life decisions.MethodsWe performed ten focus groups with 30 nursing home doctors. Advance care planning; aspects of decisions on life-prolonging treatment, and conflict with next of kin were subject to in-depth analysis and condensation.ResultsThe doctors described large variations in attitudes and practices in all aspects of end-of-life decisions. In conflict situations, many doctors (...) were more concerned about the opinion of next of kin than ensuring the patient’s best interest.ConclusionsMany end-of-life decisions appear arbitrary or influenced by factors independent of the individual patient’s values and interests and are not based on systematic ethical reflections. To protect patient autonomy in nursing homes, stronger emphasis on legal and ethical knowledge among nursing home doctors is needed. (shrink)

Background: Intravenous fluids and/or antibiotics are applied to only a limited extent in Norwegian nursing homes, and the patients are often sent to hospital in these situations. A transfer and a stay in hospital may be unnecessary strains for frail older patients. Given this background, a collaborative research project was initiated in a Norwegian county in 2009. A teaching programme was developed, which aimed to strengthen the awareness of ethics, assessments and practical procedures related to intravenous fluid and/or antibiotics among (...) healthcare professionals. Objectives: This qualitative study aimed to increase our knowledge of the ethical problems experienced by nursing home nurses in situations related to the administration of intravenous fluids and/or antibiotics. Research design: An exploratory design was used, and five focus group interviews were conducted with 26 registered nurses. A hermeneutic analytic approach was applied. Ethical considerations: This study was reported to the Norwegian Social Science Data Services in May 2010. The Regional Committee for Medical and Health Research Ethics approved the collaborative research project. Findings: The analysis showed that the nurses experienced difficult decision-making situations, which were interpreted as external pressure and internal pressure. External pressure emerged in interactions with patients and relatives. Organizational factors were also interpreted as external pressure. Internal pressure was interpreted as the nurses’ experience of feeling inadequate in situations where it was difficult to protect the dignity of patients. Discussion: These findings correspond with international studies, which show that ethical problems often arise during decision-making situations. Conclusion: In agreement with the definition of an ethical problem, we found that the nurses experienced uncertainty and disagreements about how situations should be managed. External and internal pressures related to intravenous fluids and/or antibiotics in nursing homes have not been reported in previous studies. Thus, these findings merit further exploration. (shrink)