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BACKGROUND: Danish Palliative Care Database comprises five quality indicators: (1) Contact with specialised palliative care (SPC) among referred patients, (2) Waiting time of less than 10 days, (3) Proportion of patients who died from (A) cancer or (B) non-cancer diseases, and had contact with SPC, (4) Proportion of patients completing the patient-reported outcome measure at baseline (EORTC QLQ-C15-PAL), and (5) Proportion of patients discussed at a multidisciplinary conference.PURPOSE: To investigate changes in the quality indicators from 2010 until 2020 in cancer and non-cancer patients. Patients/material: Patients aged 18+ years who died from 2010 until 2020.METHOD: Register-based study with the Danish Palliative Care Database as the main data source. Indicator changes were reported as percentage fulfilment.RESULTS: From 2010 until 2020, the proportion of patients with non-cancer diseases in SPC increased slightly (2.5-7.2%). In 2019, fulfilment of the five indicators for cancer and non-cancer were: (1) 81% vs. 73%; (2) 73% vs. 68%; (3A) 50%; (3B) 2%; (4) 73% vs. 66%; (5) 73% vs. 65%. Whereas all other indicators improved, the proportion of patients waiting less than 10 days from referral to contact decreased. Differences between type of unit were found, mainly lower for hospice.INTERPRETATION: Most patients in SPC had cancer. All indicators except waiting time improved during the 10-year period. The establishment of the Danish Palliative Care Database may have contributed to the positive development; however, SPC in Denmark needs to be improved, especially regarding a reduction in waiting time and enhanced contact for non-cancer patients.

Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child’s siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. Aim: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. Design: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. Data sources: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998–May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. Results: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. Conclusions: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care., Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child’s siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. Aim: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. Design: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. Data sources: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998–May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. Results: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. Conclusions: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care.

Difficulties in recruiting newly bereaved families and following them over time present a major barrier in grief research following the death of a spouse/parent. We established FALCON—the first prospective nationwide cohort of families with children below age 18 years whose parent died in Denmark between April 2019 and July 2021. Data from parents and children were collected within 2 months of death with ongoing follow-up assessments up to 18 months post-death. A total of 992 families were invited. The final cohort consisted of 250 families (250 widowed parents, 134 adolescents, 120 children aged 6–12 years and 63 children aged 0–5 years). In this paper, we describe the rationale for the cohort’s creation, the challenges of researching grief in families, the methods used and future plans to utilize this unique family-level dataset., Difficulties in recruiting newly bereaved families and following them over time present a major barrier in grief research following the death of a spouse/parent. We established FALCON—the first prospective nationwide cohort of families with children below age 18 years whose parent died in Denmark between April 2019 and July 2021. Data from parents and children were collected within 2 months of death with ongoing follow-up assessments up to 18 months post-death. A total of 992 families were invited. The final cohort consisted of 250 families (250 widowed parents, 134 adolescents, 120 children aged 6–12 years and 63 children aged 0–5 years). In this paper, we describe the rationale for the cohort’s creation, the challenges of researching grief in families, the methods used and future plans to utilize this unique family-level dataset.

Background: The Carer Support Needs Assessment Tool intervention (CSNAT-I) has been shown to improve end-of-life care support for informal caregivers. This study investigated the impact of the CSNAT-I on caregivers of patients recently enrolled in specialised palliative care (SPC) at home in Denmark. Methods: A stepped-wedge cluster randomised controlled trial with nine clusters (ie, SPC teams). Outcome measures were collected using caregiver questionnaires at baseline (T0) and 2-week (T1) and 4-week (T2) follow-up. Results: A total of 437 caregivers were enrolled (control group, n=255; intervention group, n=182). No intervention effect was found on the primary outcome, caregiver strain at T1 (p=0.1865). However, positive effects were found at T1 and T2 on attention to caregivers' well-being (p<0.0001), quality of information and communication (p<0.0001), amount of information (T1: p=0.0002; T2: p<0.0001), involvement (T1: p=0.0045; T2: p<0.0001), talking about greatest burdens (p<0.0001) and assistance in managing greatest burdens (p<0.0001). The effect sizes of these differences were medium or large and seemed to increase from T1 to T2. At T1, positive effects were found on distress (p=0.0178) and home care responsibility (p=0.0024). No effect was found on the remaining outcomes. Conclusion: Although no effect was found on caregiver strain, the CSNAT-I showed positive effects on caregiver distress, home care responsibility and key outcomes regarding caregivers' experience of the interaction with healthcare professionals. Trial registration number: NCT03466580.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An “evidence-to-decision” framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available., There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Background: Improving the organisational aspects of the delivery of palliative care in order to support patients throughout their disease trajectory has received limited attention. Aim: To investigate the opportunities and barriers related to organising palliation for people with terminal cancer and their families. Methods: An explorative interview study was conducted among 31 nurses and three physicians concerning an intervention facilitating a fast transition from treatment at a cancer centre at a university hospital to palliation at home. A thematic analysis was conducted. Findings: This article presents three out of seven themes: 1) improvement in the cessation of antineoplastic treatment in palliation; 2) improvement in organisations delivering palliation; and 3) improvement in multidisciplinary and cross-sectoral collaboration. Conclusions: The results demonstrate the demand for flexible, family-centred and integrated palliation at all levels, from communication and the collaborative relationship between healthcare professionals and families to service sectors., BACKGROUND: Improving the organisational aspects of the delivery of palliative care in order to support patients throughout their disease trajectory has received limited attention. AIM: To investigate the opportunities and barriers related to organising palliation for people with terminal cancer and their families. METHODS: An explorative interview study was conducted among 31 nurses and three physicians concerning an intervention facilitating a fast transition from treatment at a cancer centre at a university hospital to palliation at home. A thematic analysis was conducted. FINDINGS: This article presents three out of seven themes: 1) improvement in the cessation of antineoplastic treatment in palliation; 2) improvement in organisations delivering palliation; and 3) improvement in multidisciplinary and cross-sectoral collaboration. CONCLUSIONS: The results demonstrate the demand for flexible, family-centred and integrated palliation at all levels, from communication and the collaborative relationship between healthcare professionals and families to service sectors.

This article explores how bereaved individuals co-construct social support and social norms in the social interaction of 14 bereavement group meetings in Denmark. To study this, we used a discourse analytical approach focusing on how the participants position their social supporters. The results show that the participants designate, uphold, and presuppose two hierarchical positions to bereaved and non-bereaved supporters with different abilities to understand them. Based on this finding, the concepts of “grief participation rights” and “social support hierarchy” are proposed to supplement existing notions of “rights to grieve” and “grief hierarchy.” These concepts suggest that non-bereaved supporters are not accorded the same participatory rights in social support conversations as bereaved individuals who have suffered a similar loss as the speaker. The concepts are discussed in relation to effective social support and in the context of research on social disconnection in grief., This article explores how bereaved individuals co-construct social support and social norms in the social interaction of 14 bereavement group meetings in Denmark. To study this, we used a discourse analytical approach focusing on how the participants position their social supporters. The results show that the participants designate, uphold, and presuppose two hierarchical positions to bereaved and non-bereaved supporters with different abilities to understand them. Based on this finding, the concepts of “grief participation rights” and “social support hierarchy” are proposed to supplement existing notions of “rights to grieve” and “grief hierarchy.” These concepts suggest that non-bereaved supporters are not accorded the same participatory rights in social support conversations as bereaved individuals who have suffered a similar loss as the speaker. The concepts are discussed in relation to effective social support and in the context of research on social disconnection in grief.

Background The Domus study, a randomized controlled trial (RCT), evaluated the effect of home-based specialized palliative care (SPC) reinforced with a psychological intervention for the patient-caregiver dyad on increasing advanced cancer patients' time spent at home, as opposed to hospitalized, and the number of home deaths. As palliative care extends to include support for patients' families and may thus assist caregivers and decrease demands on them, in this study we evaluated a secondary outcome, caregiver burden. Material and Methods Patients with incurable cancer and their caregivers were randomized (1:1) to care as usual or home-based SPC. Caregiver burden was assessed using the Zarit Burden Interview (ZBI) at baseline and 2, 4, 8 weeks and 6 months after randomization. Intervention effects were assessed in mixed effects models. Results A total of 258 caregivers were enrolled. Eleven per cent of informal caregivers experienced severe caregiver burden at baseline. Caregiver burden increased significantly over time in both groups ( p = 0.0003), but no significant effect of the intervention was seen on overall caregiver burden ( p = 0.5046) or burden subscales measuring role and personal strain. Conclusion In line with the majority of previous RCTs, the Domus intervention was not able to significantly reduce caregiver burden. Future interventions should consider targeting only caregivers reporting the greatest caregiver burden.