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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.

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.

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.

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.

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.

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.

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.

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