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This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.

Background: ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. Methods: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying–End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). Results: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (− 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (− 0.6; p = 0.741), non-advanced and

Background: ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included only three dementia-specific elements, its effects might differ depending on the presence or stage of dementia. We aimed to investigate whether the program effects differ between residents with advanced, non-advanced, and no dementia. Methods: Pre-planned subgroup analysis of the PACE cluster-randomized controlled trial in 78 nursing homes in seven European countries. Participants included residents who died in the previous 4 months. The nursing home staff or general practitioner assessed the presence of dementia; severity was determined using two highly-discriminatory staff-reported instruments. Using after-death questionnaires, staff assessed comfort in the last week of life (Comfort Assessment in Dying–End-of-Life in Dementia-scale; primary outcome) and quality of care and dying in the last month of life (Quality of Dying in Long-Term Care scale; secondary outcome). Results: At baseline, we included 177 residents with advanced dementia, 126 with non-advanced dementia and 156 without dementia. Post-intervention, respectively in the control and the intervention group, we included 136 and 104 residents with advanced dementia, 167 and 110 with non-advanced dementia and 157 and 137 without dementia. We found no subgroup differences on comfort in the last week of life, comparing advanced versus without dementia (baseline-adjusted mean sub-group difference 2.1; p-value = 0.177), non-advanced versus without dementia (2.7; p = 0.092), and advanced versus non-advanced dementia (− 0.6; p = 0.698); or on quality of care and dying in the last month of life, comparing advanced and without dementia (− 0.6; p = 0.741), non-advanced and

Long term care facilities (LTCFs) are increasingly a place of care at end of life in Europe. Longer residence in an LTCF prior to death has been associated with higher indicators of end of life care; however, the relationship has not been fully explored. The purpose of this analysis is to explore associations between length of stay and end of life care. The analysis used data collected in the Palliative Care for Older People in care and nursing homes in Europe (PACE) study, a cross-sectional mortality follow-back survey of LTCF residents who died within a retrospective 3-month period, conducted in Belgium, England, Finland, Italy, the Netherlands and Poland. Primary outcomes were quality of care in the last month of life, comfort in the last week of life, contact with health services in the last month of life, presence of advance directives and consensus in care. Longer lengths of stay were associated with higher scores of quality of care in the last month of life and comfort in the last week of life. Longer stay residents were more likely to have advance directives in place and have a lasting power of attorney for personal welfare. Further research is needed to explore the underlying reasons for this trend, and how good quality end of life care can be provided to all LTCF residents

Contains fulltext : 215624.pdf (publisher's version ) (Open Access), BACKGROUND: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar. METHODS: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support. RESULTS: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and faci

Contains fulltext : 215612.pdf (publisher's version ) (Open Access), BACKGROUND: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation study was conducted. This paper reports on the results of this process evaluation, of which the aim was to provide a more detailed understanding of the implementation of the PACE Programme across and within countries. METHODS: The process evaluation followed the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework and involved various measures and tools, including diaries for country trainers, evaluation questionnaires for care staff, attendance lists and interviews (online and face-to-face, individual and in groups) with country trainers, managers, PACE coordinators and other staff members. Based on key elements of the PACE Programme, a priori criteria for a high, medium and low level of the RE-AIM components Reach, Adoption, Implementation and intention to Maintenance were defined. Qualitative data on factors affecting each RE-AIM component gathered in the online discussion groups and interviews were analysed according to the principles of thematic analysis. RESULTS: The performance of the PACE Programme on the RE-AIM components was highly variable within and across countries, with a high or medium score for in total 28 (out of 37) LTCFs on Reach, for 26 LTCFs on Adoption, for 35 LTCFs on Implementation and for 34 LTCFs on intention to Maintenance. The factors affecting performance on the different RE-AIM components could be classified into three major categories: (1) the PACE Programme itself and its way of delivery, (2) people working with the PACE Programme and (3) contextual factors. Several country-specific challenges in implementing the PACE Programme were identified. CONCLUSIONS: The imple

Background The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar. Methods The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support. Results Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1–3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilit

Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care. Objectives: To evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates. Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement). Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09–0.43, P = 0.003), nurses (0.59; 95% CI: 0.43–0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08–0.34, P = 0.002). Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed.

Background: An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors. Objectives: Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication. Design: Cross-sectional survey. Settings: Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n = 290). Participants: Nurses and care assistants (n = 1680) completed a self-efficacy scale and were included in the analyses. Methods: Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level. Results: Thde proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30–2.65]); nurses (compared to care assistants) (1.75 [1.20–2.54]); completion of higher secondar