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Background: Resilience is an increasingly used term in medicine and subject to various definitions, often not easy to grasp. There are established core concepts for patients receiving palliative care, for example, meaning in life, that have already been researched a lot. Resilience, relative to these concepts, is a new object of research in palliative care, where it has so far been used predominantly with regard to the well-being of teams. Aim: To explore how experts in palliative care define the concept of resilience and its suitability for patients, significant others, and professionals. Design: Qualitative study using summarizing content analysis according to Mayring. Setting/participants: Twenty-one health and social care professionals with expertise caring for persons with life-threatening/limiting illnesses and their relatives were interviewed in three individual interviews and four focus groups. All conversations were recorded, transcribed, coded via MAXQDA, and validated by another researcher. Results: Resilience has been described as something procedural, dynamic, individual, and flexible. In connection with well-known concepts such as posttraumatic growth or terms from the field of mindfulness, social environment or personal factors have also been linked to resilience. Resources such as spirituality can contribute to resilience, and resilience itself can function as a resource, for example, by contributing to quality of life. An active use of the term in practical work with patients or relatives is rare, but it is used in education or team measures. Limited lifespan can pose a challenge to an active use of the concept of resilience. Conclusion: Resilience as a very individual approach provides added value to other core concepts of palliative care. Within the palliative context, the normative dimension of resilience must be well reflected. A broader definition of resilience is recommended, leaving room for everyone to find their own form of resilience. The concept of resilience in palliative care includes opportunities as well as risks and should, therefore, be implemented carefully, requiring specific training. Plain language summary: What experts think about resilience in palliative care Why was this study done? Resilience is described as a process of coping with stress or adversity while remaining physically and mentally functional. Resilience is subject to a range of definitions. In the context of palliative care, where many other concepts, such as meaning in life, are already used, the definition of resilience also represents a challenge. We wanted to learn how people working in palliative care, defined by us as experts, understand and use the concept of resilience. In addition, there are three different target groups for resilience: patients, significant others and professionals. We wanted to learn about the differences in the application of resilience to these groups. What did the researchers do? We conducted interviews with a total of 21 experts in individual and group settings (so-called focus groups). All interviews and focus groups were audiotaped and transcribed verbatim to analyse them precisely using qualitative methods. What did the researchers find? This study shows how resilience is understood in the work field of the participants: namely as something procedural, dynamic, individual and flexible but normative at the same time. Factors such as the social environment, the number and intensity of crises already experienced (known as the idea of posttraumatic growth), aspects from the field of mindfulness or spirituality can contribute to developing resilience, which is why we call these things resources for resilience. Experts use the term resilience less in their daily work with patients or significant others, but more in education. What do the findings mean? The concept of resilience in palliative care involves both risks and opportunities. Practical work with the concept has to be well reflected and must be applied sensitively. Therefore, it is essential that professional as well as informal caregivers receive specific training that also includes respect for each individual's personal concept of resilience. [ABSTRACT FROM AUTHOR]

Objective In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. Design/Setting/Methods A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. Results In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. Conclusion This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. [ABSTRACT FROM AUTHOR]

Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion: A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary: The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. [ABSTRACT FROM AUTHOR]

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available. [ABSTRACT FROM AUTHOR]