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Background When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients’ quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were Methods A prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients’ treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy – General questionnaire. Family caregivers’ treatment expectations were assessed once. Results A total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04). Conclusion This study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.

ObjectiveSouth Asian migrants have a higher burden of life-threatening diseases and chronic diseases compared to other ethnic groups. Yet, knowledge gaps remain around their palliative care needs in the host countries. The aim of the review was to present results from a systematic literature review of available international evidence on experiences with and perspectives on palliative care among older South Asian migrants, relatives, and healthcare providers.MethodsA systematic review in accordance with PRISMA guidelines was conducted in February 2018, searching PubMed, CINAHL, PsychINFO, and EMBASE databases. PROSPERO #CRD42018093464. Studies included empirical research, providing international evidence on experiences and perspectives on palliative care of South Asian migrants and were published between 2000 and 2018. Thematic synthesis was used to analyze data.ResultsA total of 30 articles were included: qualitative (24), quantitative (5), and mixed methods (1). Three main themes were discovered: 1) palliative care practice within the family, 2) trust as a precondition of palliative care, and 3) the importance of knowledge and cultural competency. All the themes, to a greater or lesser extent, are related to access to and use of palliative care services by South Asian migrant families.Significance of resultsInvolvement of family members in palliative care decision making could improve the satisfaction of South Asian migrant families toward the service. For example, Advanced Care Planning involving family members could be a possible way to engage family members in palliative care decision making. Supportive interventions, e.g. providing knowledge, aimed at patients and their family members might improve knowledge and increase awareness among South Asian migrant families of palliative care. Knowledge gained from this review could be implemented with other ethnic minority groups.

Background Ideally, patients with life-threatening illness who are suffering from multiple symptoms and reduced quality of life should receive palliative care that addresses their specific needs. The many well-defined clinical pathways may not always leave room for a person-centred and individual approach with respect to symptom control, psychosocial and spiritual support, and practical issues. In deciding how to organize outpatient specialist palliative care (SPC), it is relevant to include the perspectives of both patients and families. Thus, the aim of this study was to compare two models for outpatient SPC: first contact between patient, next-of-kin and doctor/nurse in the form of a home visit; and first visit in the hospital setting. Method The study was a comparative mixed methods study with follow-up at one and 3 months. It started with a quantitative strand in the form of a 38-item questionnaire. Data were analysed using linear mixed effects models, with maximum likelihood estimation for each outcome variable. The repeated measurements on patient level were modelled by including random intercepts of patients in the mixed model. Results In total, 190 participants were enrolled, of whom 102 answered the first questionnaire. No differences were found between the two SPC interventions when development in satisfaction with care, communication or overall quality of life were compared. At baseline, a significantly higher score for satisfaction was found, in favour of first visit taking place in the hospital setting (65.91 vs. 55.83; p = 0.03) measured by FAMCARE-P16, and more patients were satisfied with availability of nurses and their abilities to listen and communicate than of doctors. Conclusion Specialist palliative care is in request for many patients in the late phase of their disease. We found no significant differences in satisfaction with care, communication with health professionals or in overall quality of life between the two models. This may imply that access to SPC is more important than the model that is applied, and that a person-centred approach together with time available may matter more than the context. These two factors should be considered when implementing SPC.

Aim This study is based on a project inspired by action research with the aim to elucidate possibilities and barriers for the organizational and professional development of community palliative care services. Background Many people with life-threatening diseases want to stay in their own homes as long as possible. Therefore, community palliative care services are significant. Experience concurrently shows several interdisciplinary and inter-sectorial challenges between professions and different organizations. Method The evaluation consisted of continuous reflections of practice by the involved professionals, an interview study with 21 professionals and a questionnaire survey among 88 professionals and 13 relatives. Results The evaluation showed that the guideline system The Gold Standard Framework and EORTC-QLQ-C15-PAL in combination with more locally-developed interventions, according to the professionals, had improved the community palliative care services. However, the results also showed barriers for improvement and change of practice: such as mainly insufficient management, lack of commitment among some of the professionals to work with the new interventions, insufficient information technology, reorganization, cost-cutting, and differently structured organizations. Conclusion The interventions encouraged the community development palliative care, but also showed that there were barriers for the change process. There is a need for research and development of how to lead and manage change processes and methods of cooperation in community palliative care.

Background. Studies indicate problems between different professional groups working with palliative care and the organisation of palliative home care at nursing homes. The purpose of this study is to examine international experiences and cooperative development initiatives regarding the organisation of community palliative care services.Method. The study has been carried out as a literature study based on bibliographic searches in international databases with selected key words.Results and Conclusion. The study of the literature identified 19 studies described in 20 articles that relate to development efforts and interventions regarding the organisation of palliative care in communities. Nearly, all of the studies were based on health care professionals' assessments of users (the relatives). However, it is unknown whether or how patients and relatives experience a positive effect of the interventions. The literature study shows that it is a great methodological challenge to complete and evaluate studies concerning organisation and cooperation using methods that make the results useful for others.

Background There is a general lack of research regarding the palliative care of nursing home residents and professional education in palliation in Denmark. Qualification requirements need to be established, best practices must be spread, and a systematic approach to providing competent palliative care in nursing homes must be found. Purpose The purpose of this study was to evaluate an attempt to develop—through three pedagogical methods—the palliative care competencies of the personnel and make organizational improvements at three Danish nursing homes. Method A process-based, user-oriented evaluation method was used. Twenty-two nursing home employees and five teachers participated in five focus group interviews. Results Both the nursing home employees and the teachers felt that the project as a whole, and the three methods used, contributed to an improvement in the staff's palliative care competencies and the organization. Conclusion The study exposes the barriers to improving Danish palliative care provision and factors required for development to succeed. It highlights the need for recognition by colleagues, active involvement of nursing home managers, and a certain understanding of the methods, including the importance of prioritizing practice-based competence training.

The article analyses how the everyday life of terminally ill people nursed at home is influenced by construction processes that allocate ‘victim’ and ‘villain’ roles to the dying and their relatives. The article is based on two selected case studies of the dying, their relatives and the district nurses caring for them. By enlisting theory on the construction of social problems, the article reflects how we construct normative settings for acceptable behaviour on the part of dying people and their relatives. Dying people have to behave according to preconceived standards for a ‘good family member,’ e.g., they should not be too demanding; they have to cooperate on terms set by healthcare professionals by accepting their interventions. For relatives, the normative settings dictate that they have to accept the autonomy of the dying person; they must be modest and humble, obliging towards healthcare professionals and trusting that the professionals are doing the right thing. Such settings stand in comp...

Background Studies establish that many incurably ill people would prefer to die at home, whether their final home is their own home or a nursing home. Experience shows that the professionals in palliative care at the basis level need to increase their competences. The purpose of this literature review is to examine experiences with interventions regarding the development of competencies within community palliative care services – in other words, at the individual work places. Method The study has been carried out as a literature review of international databases (PubMed/Medline, CHINAL, PsycInfo) with selected key words. Results The review of the literature identified 15 publications which dealt with interventions regarding education and competence building. The publications represent individual studies, only two of which were controlled. All conclude that competence building has a positive effect according to the professionals. It is unknown whether or how patients and relatives feel a positive effect from the interventions just as it is unknown how the development of competencies has actually led to a more developed practice. The effect of local competence building in palliative care in the primary sector is lacking. Methods are needed to further examinations of how a competency has actually led to a more developed practice.