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Background: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions., Methods: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis., Discussion: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science., Trial Registration: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23., (© 2024. The Author(s).)

Background: Few qualitative studies of barriers and facilitators when implementing electronic patient-reported outcome measure (ePROM) in municipal cancer care exist within the large body of symptom assessment research. Such data, gathered from healthcare professionals' (HCPs) perspective, are central to the development and design of sustainable interventions aiming for a systematic and patient-centered symptom assessment to patients with cancer., Objective: The aim of this study was to identify and explore barriers and facilitators, as described by HCPs, in the implementation of the ePROM application "Eir" at a municipal cancer care unit in Norway., Methods: The study applies a qualitative method, conducting an inductive data inquiry of semistructured individual interviews and focus groups with 14 Norwegian HCPs. Analysis was inspired by thematic analysis as described by Braun and Clarke., Results: The analysis revealed 3 main themes affecting the implementation of ePROM in municipal cancer care: "achieving patient-centered care," "crucial management and training," and "technological barriers.", Conclusion: The results from this study suggest that HCPs' motivation plays a significant role when implementing ePROM. Motivation of HCPs was strongly influenced by whether the application added value to previously used symptom assessment. Hands-on management and a multiprofessional approach enabled the implementation by facilitating adaptations, training, and resources., Implications for Practice: The findings show that adapting the implementation of ePROMs to patient population could be of major importance. Early integration of ePROMs in cancer care could facilitate use throughout the disease trajectory., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Dementia is a public health priority worldwide due to its rapidly increasing prevalence and poses challenges with regard to providing proper care, including end-of-life care. This study is part of a research project about nursing staff members' experiences with providing palliative care for people with severe dementia in long-term care facilities. In an earlier study, we found that structural barriers that complicated the provision of palliative care led to moral distress among nursing staff. In this study, we performed a secondary analysis of the same data set to gain a deeper understanding of nursing staff members experiences of moral distress while providing palliative care for residents with severe dementia in long-term care facilities., Methods: A qualitative, descriptive design was used. Data were collected during in-depth interviews with 20 nursing staff members from four Norwegian long-term care facilities. Content previously identified as moral distress was reanalysed by thematic text analysis, as described by Braun and Clarke, to gain a deeper understanding of the phenomenon., Results: The nursing staff members' experiences of moral distress were generally of two types: those in which nursing staff members felt pressured to provide futile end-of-life treatment and those in which they felt that they had been prevented from providing necessary care and treatment., Conclusion: The findings indicate that nursing staff members' experiences of moral distress were related to institutional constraints such as time limitations and challenging prioritizations, but they were more often related to value conflicts. Nursing staff members experienced moral distress when they felt obligated to provide care and treatment to residents with severe dementia that conflicted with their own values and knowledge about good palliative care. Both education interventions focused on improving nursing staff members' skills regarding communication, ethical judgement and coping strategies; in addition, supportive and responsive leadership may have significant value with regard to reducing moral distress. Our findings indicate a need for further research on interventions that can support nursing staff members dealing with ethical conflicts in providing palliative care to residents with dementia., (© 2022. The Author(s).)

Aim and Objectives: The aim of this study was to explore family caregivers' experiences with palliative care for a close family member with severe dementia in long-term care facilities., Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life., Design: A qualitative design with a phenomenological approach was adopted., Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities., Results: The family caregivers' experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment., Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust.

Background: Dementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities., Methods: This was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke., Results: The major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care., Conclusions: The findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.

Background: People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes., Methods: To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes., Results: The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests., Conclusions: We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care.