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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.

The paper aims to identify and describe the European evidence on opportunities and barriers to access and utilization of palliative care among non- western migrants. A systematic review in accordance with PRISMA guidelines was conducted in June 2020, searching Medline, CINAHL, PsychINFO and EMBASE databases. PROSPERO# CRD42020193651. Studies included empirical research published between 2011 and 2020. Search words were, for example, ethnic groups and palliative care. Thematic analysis was used to analyze data. Twenty nine qualitative and six quantitative studies were included. Four main themes were identified: communication and language; knowledge and awareness; patient preferences, cultural and religious issues; and lack of resources at different levels of palliative care service provision. Migrants’ access to palliative care is impeded at system, community and individual levels, yet, recommendations are mostly at the individual level. Closer attention is required to these different levels when designing future palliative interventions for migrants.

There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

The study’s aim is to explore the experiences of people with advanced cancer and professionals participating in a program with focus on rehabilitation and palliative care. The study is based on two adjusted rehabilitation programs for 33 people with advanced cancer and 12 professionals. An observational study was conducted among the participants and two focus group interviews with 10 professionals. The analytic themes were “Lightness and happiness to gain control in everyday life,” “Community and closeness,” and “Training as a happiness and changing agent.” The activities had to support physical functions and everyday activities promoting body identity and well-being as well as emotions like closeness, lightness, and happiness in groups with like-minded people and at home with a partner and other family members. These activities and theory of emotions and body can expand the understanding of palliative care and rehabilitation as separated or integrated perspectives theoretical and in practice.

International evidence supports the benefits of early use of palliative care, although the best use of services is often under-utilised among Danish migrants. The study aims to develop a theoretically informed, evidence-based intervention to increase support in palliative care service provision among non-western migrant patients with a life-threatening disease and their families in Denmark.The overall approach was guided by the United Kingdom Medical Research Council framework for developing and evaluating complex interventions by involving stakeholders for example patients, family caregivers, and healthcare professionals. The intervention was developed iteratively by incorporating theory and evidence. Evidence was synthesized from a systematic review, semi-structured interviews, and group discussions with patients (n = 8), family caregivers (n = 11), healthcare professionals (n = 10); and three workshops with migrants (n = 5), social and healthcare professionals (n = 6). The study took place in six different settings in two regions across Denmark.The safe and secure complex intervention is a healthcare professional (e.g. nurse, physiotherapist, or occupational therapist) led patient-centred palliative care intervention at the basic level. The final intervention consists of three components 1. Education and training sessions, 2. Consultations with the healthcare professional, and 3. Coordination of care.This study describes the development of a supportive palliative care intervention for non-western migrant patients with palliative care needs and their families, followed by a transparent and systematic reporting process. A palliative care intervention combining multiple components targeting different stakeholders, is expected that safe and secure is more suitable and well customized in increasing access and use of palliative care services for non-western migrant families in Denmark.

Background Early identification of patients who require palliative and supportive care at the general palliative care level is challenging. The Supportive & Palliative Care Indicators Tool (SPICT™) might provide a helpful framework for this process. Aim To translate, culturally adapt and content validate SPICT™-DK in hospital, primary care, and general practice and within the broader Danish health care context. Methods SPICT™-DK was translated and cross-culturally validated by using the TRAPD-model (Translation, Review, adjudication, pretesting, and documentation) as well as the EORTC- translation guide (European Organisation for Research and Treatment of Cancer). In the pre-(pilot) testing phase, six focus group interviews and five individual interviews were conducted involving n = 29 health care professionals from general practice, primary care, and hospital. The qualitative data were analyzed through thematic analysis and the SPICT™-DK was then revised and published. Results The interviews revealed that SPICT™-DK can be used to identify people with palliative care needs. Three themes were derived from the analysis and showed SPICT™-DK provides a linguistic framework but must be used as an interdisciplinary tool as that SPICT™-DK requires competencies and collaboration. Conclusion SPICT™-DK is now translated and culturally validated in a Danish healthcare setting. The tool is useful to identify people with palliative care needs but must be implemented as an interdisciplinary collaborative intervention. SPICT™ -DK cannot be used by all healthcare professionals as it requires disease-specific competencies. However, it provides a common language for early palliative care interventions which can form the basis for interdisciplinary planning of future treatment and care.

The aim of this study was to investigate current nursing practice related to end-of-life discussions with incurable lung cancer patients and their family caregivers from the perspectives of patients, family caregivers, and nurses in an oncology outpatient clinic. This phenomenological hermeneutic study included nine patients, eight family caregivers, and 11 nurses. Data were collected using participant observation, informal and semi-structured individual or joint interviews with patients and family caregivers, and focus group interviews with nurses. A Ricoeur-inspired approach was used to analyze the data. Three themes were identified: (a) content of end-of-life discussions, (b) timing of end-of-life discussions, and (c) challenges in end-of-life discussions. End-of-life discussions were seldom initiated; when they were, it was often too late. Discussions addressed treatment, place of care, practical/economic concerns, and existential matters. The physical environment at the outpatient clinic, lack of continuity, and nurses’ instrumental task workloads and time pressure posed challenges to initiating end-of-life discussions.

BackgroundGiven limited palliative care resources, volunteers can be viewed as essential. To better understand the contribution of volunteers, it is useful to look at their roles in care systems with high level of financed public welfare, such as those found in Nordic countries.AimTo develop research-based knowledge of experiences related to volunteer roles in palliative care in Nordic countries with similar welfare systems.DesignSystematic review and thematic synthesis of qualitative studies.Data sourcesCinahl, APA PsycInfo, SocINDEX, Idunn, Cristin, SwePub, SweMed+, Doria and Danish Research Database from 2005 to 2020.Eligibility criteriaQualitative peer-reviewed studies reporting first-hand experience of volunteers in palliative care in hospital, community (homecare and nursing home) and hospice settings (hospice institution and hospice home care); English abstract and available full text.ResultsOf 1521 citations, 11 articles were included in the review: seven Norwegian articles, three Swedish articles and one Danish article. Three overall themes emerged from analysis: (1) volunteers offered something different than professionals, (2) volunteering took place in professionals’ domain, (3) volunteers were motivated by personal gains.ConclusionVolunteers provide valuable support to patients and next of kin that differs from professionals’ support. Volunteers are motivated by direct interaction with patients and next of kin. Opportunities for interactions depend on the healthcare setting and professionals’ understandings of volunteers’ role. Formal training of volunteers is limited and supportive available professionals important to volunteers. Professionals’ understandings of volunteers’ role should be improved to strengthen volunteers’ role in palliative care in Nordic countries.PROSPERO registration numberCRD42020222695.

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.

This study explores care experiences while utilising palliative care services of non-western migrant families from the perspectives of patients, family caregivers, and healthcare professionals in Denmark. Twenty-three semi-structured individual and group interviews were conducted among eight patients with a life-threatening disease, 11 family caregivers, and ten healthcare professionals. Thematic analysis revealed three themes: 1) Communication between families and healthcare professionals; 2) Building and lack of trusting relations, and feeling safe, and 3) Access to information and navigating in the healthcare system. Moreover, ‘‘language and culture’’ emerged as transaction themes that are not mutually exclusive, however, interconnect across the mentioned three themes. Non-western migrant families can be supported by healthcare professionals’ cultural competency training, negotiating on providing services concerning information, patient preferences, family involvement, and palliative care setting. This study findings urge inter-sectoral collaboration to ensure needs-oriented and linguistically and culturally appropriate palliative care services for non-western migrant families in Denmark.

Omsorg for døende borgere i palliative plejeforløb i eget hjem og på plejehjem er en kommunal opgave. Frivillige tilbyder at være med til at løfte denne velfærdsopgave. Dette kvalitative studie undersøger to forskningsspørgsmål: (1) Hvad kendetegner frivillige vågeres arbejde, når de sidder hos døende? (2) Hvilke udfordringer og/eller muligheder er knyttet til grænser mellem frivilligt og professionelt arbejde hos døende i palliative plejeforløb? Deltagerobservation og interviews udgør studiets metoder. Fire plejehjem i to kommuner og to vågegrupper gav adgang til observationer. 65 timers deltagerobservation af vågernes arbejde i palliative plejeforløb og fællesmøder samt 16 interviews med vågere, pårørende og professionelle udgør studiets empiriske materiale. Fænomenologisk omsorgsfi losofi og et symbolsk interaktionistisk ’boundary-work’-perspektiv udgør den teoretiske ramme. Det konkluderes, at vågernes frivillige arbejde er kendetegnet ved sansende og stedfortrædende omsorg, hvor tid hos den døende giver erfaringer af særlig betydning. Grænser mellem det frivillige og det professionelle arbejde markeres og opretholdes af både vågere og professionelle. Vågerne overskrider og udvider grænser på nærværets betingelser i situationsspecifi k omsorg for døende og deres pårørende.

BACKGROUND The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients’ homes and long distances between the patients and the hospitals. OBJECTIVE Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home. METHODS This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients’ homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi’s descriptive phenomenological methodology. RESULTS A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions. CONCLUSIONS Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.

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...

Project Palliation in the Odsherred Municipality is concerned with testing of a cooperation model between Lynghuset, general practice and Pain Centre, Holbæk Hospital. The purpose was to improve the palliative care to people suffering from life-threatening diseases through development of interdisciplinary and cross-sectorial cooperation. The model has shown to contribute to improvements but it also leaves room for further qualification.

Professionelles kategoriseringer og retorik har betydning for de konkrete tilbud, som patienter oplever og modtager i sundhedssystemet. I Sundhedsstyrelsens nye anbefaling for den palliative indsats fremgår det, at indsatsen overfor alle mennesker med livstruende sygdomme skal udvikles. Det kan blive en udfordring, når professionelle er bærer af en kultur, hvor kræft og palliation placeres i samme kategori. En måde at bidrage til ændringer i praksis eller grundlag for ændringer er at få øjnene op for kategoriseringsprocessernes logik og tilblivelse. Denne artikel undersøger spørgsmålet: Hvordan begrunder og taler professionelle om deres muligheder for at udøve palliativ indsats til mennesker med kræft og andre livstruende sygdomme som fx kronisk obstruktiv lungelidelse (KOL) og hjertekarsygdomme? Metoden er fokusgruppeinterviews med praktiserende læger, sygeplejersker, social- og sundhedsassistenter samt social- og sundhedshjælpere. Interviewene er analyseret ud fra en socialkonstruktionistisk tilgang og med afsæt i Potters kategoriseringstemaer: a) Ontologiske manipulation, b) hvordan noget gøres ekstremt (stort) eller minimeres (lille), og c) hvordan noget kan normaliseres. Resultaterne viser, hvordan palliation og kræft forbindes med alvor, død og unge mennesker, mens andre livstruende sygdomme forbindes med noget fredeligt, livet, ældre og i mindre grad med palliation. Dette får bl.a. den betydning, at de professionelle oplever, at de møder mennesker med kræftsygdomme med større opmærksomhed og stiller sig fagligt og personligt mere til rådighed. Med henblik på ændring af praksis og udvikling af en mere nuancerede forståelse af kræft, andre livstruende sygdomme og palliation, bliver det væsentligt at påvirke de sundhedsprofessionelle gennem uddannelser, i klinikken og via patientforeninger.

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.

Artiklen er baseret på to empiriske undersøgelser af hverdagslivet tæt på døden. Den ene er foretaget i forbindelse med et forsknings- og udviklingsprojekt om døden på plejehjem. Den anden omhandler døden i eget hjem og er en del af et ph.d. projekt. Formålet med artiklen er at undersøge forskelle og ligheder mellem hvordan døende i eget hjem, plejehjemsbeboere, pårørende og professionelle oplever at skulle tale om døden og diskutere hvordan den kan forstås. Empirien fra de to undersøgelser består af observationer og interviews med beboere på plejehjem, deres pårørende og plejehjemspersonale samt uhelbredeligt syge døende i eget hjem, deres pårørende og hjemmesygeplejersker. Datamaterialet er analyseret ud fra en hverdagslivsteoretisk ramme. Døende derhjemme og plejehjemsbeboere forholder sig fortrinsvis til nutiden og fortiden - helst ikke til fremtiden. Det betyder at de undgår at forhold sig til og tale om døden, idet den repræsenterer fremtiden, det usikre og det ultimative brud. Når døden berøres, sker det oftest tilfældigt når hverdagen alligevel brydes. Det indebærer bl.a. at aktørerne kan være i tvivl om indholdet i samtalen eller, hvorvidt samtalen har fundet sted. I følge døende hjemme, plejehjemsbeboere og pårørende er en sådan samtale forbeholdt familien - ikke de professionelle. Indholdet i en samtale om døden er yderligere afhængig af aktørpositionen. Hvor plejehjemspersonale, pårørende, plejehjemsbeboere og døende hjemme især forbinder samtale om døden med praktiske forhold, så forbinder hjemmesygeplejersker dette med psykiske reaktioner indenfor en kriseteoretisk ramme. Disse forskelle kan hænge sammen med forskellig faglig praksis og uddannelsestraditioner