Palliative Care and Social Practice最新文献

Background: Informed end-of-life decision-making requires a high level of death literacy. We still know little about the general population's level of knowledge and its determinants.

Aim: To assess knowledge of the general population regarding the legal status and definitions of various end-of-life practices, and to compare the level of knowledge according to individual characteristics known to influence death literacy.

Design: A self-administered questionnaire featuring two evolving vignettes was used to assess participants' knowledge relating to the legal status of various end-of-life practices and whether these practices are Medical Aid in Dying (MAiD), which is legal in Canada. The questionnaire also assessed participants' individual characteristics such as their experience as caregivers for someone who received palliative care, their perception of health, and their financial situation.

Setting/participants: Participants were community-based community-based Canadian adults able to read French or English.

Results: In total, 27% of the participants associated the description of care withholding with MAiD, 39% incorrectly associated the description of continuous palliative sedation with MAiD, and 34% incorrectly indicated that the described intervention was illegal. Having cared for someone who received palliative care, at a younger age, a higher level of education, and having participated in advance care planning were associated with better knowledge regarding end-of-life practices.

Conclusion: Gaps in knowledge about end-of-life practices exist in the general population, they are associated with different individual characteristics and may limit citizens' capacity to engage in informed end-of-life decision-making. Community-based interventions adapted to different audiences are essential to ensure a quality end-of-life for all.

Background: As Compassionate Communities (CCs) are developing worldwide, there is a growing need to systematically assess if they are having the expected effects on the community. Although having a single strategy would be ideal in terms of standardization and comparison, due to the inherent heterogeneity of CCs, it is not known how feasible this would be.

Objectives: To assess the feasibility of creating a general strategy, based on the results of a series of focus groups conducted across three diverse CCs, to guide the evaluation of already existing programs and the development of new ones.

Design: Focus groups in three cities, including different types of stakeholders, were conducted to identify potential outcomes (benefits) from CCs, as the base of a general strategy to assess CCs.

Methods: We coded the discussions and built a list of the outcomes mentioned. Then, we merged those similar enough into a more general one that encompassed the others. We extracted from reviews all the CCs outcomes that have been measured. We merged the outcomes from the focus groups and the reviews and built a single list.

Results: We obtained a final list of 46 outcomes; 44 were reported from the focus groups, and two more were added from the reviews. Of the 44 from the focus groups, 22 (50%) were present in the three CCs, 14(32%) were present in two CCs, and the remaining 8 (18%) were present only in one compassionate community. There were outcomes commonly reported both in the three CCs and in the literature reviews related to training the general community in compassion and end-of-life topics, facilitating the development of community networks, and generating public spaces for social integration.

Conclusion: Half of the identified outcomes were reported in the three CCs. This indicates the feasibility of creating a single strategy but also reflects the need to leave room to include other aspects specific to each community according to its context in the assessment.

Background: Municipality-based pediatric palliative care (PPC) is recommended to promote the quality of life for the child and family by enabling them to stay at home as much as possible. However, municipality-based PPC presents complex challenges and places significant demands on healthcare professionals. Yet, it remains an underexplored field.

Objectives: Semi-structured and individual interviews with 16 healthcare professionals with experiences from PPC were conducted and transcribed. Data was analyzed using systematic text condensation.

Results: To increase the knowledge base and understanding of important factors for municipality-based PPC from healthcare professionals' perspective.

Design: A qualitative method with an interpretive descriptive design was applied.

Methods: The bridging theme "Establishing a sense of security and predictability for the family and healthcare professionals" emerged from the analysis. This was elaborated by three main themes: (1) "A comprehensive approach to the family," (2) "Establishing and maintaining a dedicated, multidisciplinary pediatric palliative team in the municipality," and (3) "Collaboration and communication between involved services." Each main theme was further elaborated by subthemes.

Conclusion: The importance of establishing security and predictability in municipality-based PPC was emphasized. To achieve this, holistic support for the entire family and ensuring sufficient competence in the municipality seem crucial. Establishing municipality PPC teams is proposed, and the need for early referral, routines for collaboration, and a designated coordinator appear to be key systemic factors.

Registration and reporting guidelines: The study is registered in the institutional system for research project (RETTE ID: R2082), and the study is reported according to the COREQ checklist for qualitative studies.

Background: The specialist palliative home service (SAPV) federal framework contract for adults, to be enacted in Germany until 2028, does not legally mandate the hiring of a third professional group beyond specialist nurses and physicians, although palliative care embraces the psychosocial dimension and an interprofessional approach.

Objectives: This article aims to explore the role of medical staff in integrating social work (SW) into SAPV.

Design: Qualitative case study.

Methods: The study utilised theoretical and qualitative quota sampling to explore barriers to integrating SW into SAPV-teams, ensuring diverse perspectives. Sequential analysis was applied to uncover collective interpretations, generating and validating interpretive hypotheses directly from the data.

Results: Four physicians and four nurses from the SAPV-team based at Heidelberg University Hospital participated. The medical staff's attributions to SW significantly impact its integration into SAPV. Their perception of the SW profession determines the extent and manner of its integration into daily practices. Attributions on SW in SAPV as determined by nurses and physicians were social-medical knowledge, counselling, being a core competence in SAPV and similarities to the profession of psychologists. In the examined case, the integration was effective, and there was a desire for an increased presence of SW because there is still a lack of their working hours, and the medical staff wished for the social workers' presence during home visits.

Conclusion: This study highlights that SAPV requires SW to be effective, nonetheless, not being considered in the new federal contract to allocate resources. Possible barriers against the integration of SW within the real-world clinical practice of palliative care should be further investigated in future studies by involving social workers' and healthcare managers' experiences and strategies to understand why the employment of social workers in SAPV is progressing slowly and inform strategies to enhance their integration.

Background: Pain is a common symptom in people with dementia living in nursing homes, but cognitive impairment, including language and communication difficulties, challenges pain assessment and the ability to self-report pain.

Objectives: This study aimed to identify and summarize patterns, advances, and gaps in research literature describing pain assessment in people with dementia living in nursing homes.

Design: We conducted a scoping review following Arksey and O'Malley's methodological framework.

Methods: Systematic searches were conducted in CINAHL, Embase, MEDLINE, and PsycINFO. We included studies describing pain expressions in people with dementia and/or healthcare personnel assessment of pain in people with dementia, in a nursing home context. Charted data included demographics, methodological descriptions, ethical and quality assessment and relevant findings. Relevant findings were summarized using thematic analysis, and an overview of patterns, advances, and gaps in the research literature is presented.

Results: Thirty-nine studies were included. The results describe three patterns: (1) pain awareness; (2) suspected pain and (3) pain mapping. Collectively, these patterns constitute a process of pain assessment, integrating pain expressions of people with dementia. Important perspectives on self-reporting are touched upon in several of the included studies, though direct descriptions of attempts to capture the residents' own experience of pain are sparse.

Conclusion: This scoping review provides a comprehensive description of pain assessment in people with dementia living in nursing homes as a process in three steps. We identified several knowledge gaps in the understanding of this process and provide concrete recommendations for further research. The results underpin the importance of pain assessment approaches that incorporate the flexibility to meet residents' varying and potentially fluctuating ways of communicating pain.

Trial registration: This scoping review is registered in the Open Science Framework (https://osf.io/8kaf5/).

Background: In countries where euthanasia and assisted suicide are not allowed, such as France, little is known about how a request for euthanasia and/or assisted suicide, expressed by an end-of-life patient, impacts their relatives.

Aim: To understand the experiences of relatives of patients in the advanced stages of a serious illness, hospitalized in a Palliative Care Unit (PCU), and requesting euthanasia or assisted suicide in the French context where these practices are illegal.

Design: We conducted a qualitative study in five French PCUs over the course of 1 year. Following the principles of grounded theory, semi-structured interviews were conducted with the relatives of patients who had explicitly requested euthanasia or assisted suicide to a healthcare professional. Two interviews were scheduled: the first within 48 h of the initial request (D1), and the second one a week later (D7).

Methods: We conducted in-depth face-to-face interviews with relatives of patients requesting euthanasia or assisted suicide, in PCUs within a specific region of France, prior to the French Claeys-Leonetti Law. A thematic analysis of the data was performed.

Results: Ten semi-structured interviews were conducted. Five families (patients and their relatives) were included, and eight relatives were interviewed. The discussions between patients and their relatives about requesting euthanasia or assisted suicide varied significantly from one family to another. Five main themes emerged: denouncing end-of-life conditions; the desire to have a peaceful death; the different levels of support and accompaniment for the request; values in favor of euthanasia and assisted suicide; boundaries and barriers.

Conclusion: Requests for euthanasia and/or assisted suicide are generally understood by relatives. However, receiving and discussing such requests is a challenging and emotionally demanding task, generating significant suffering. All relatives seem to experience some degree of suffering, although its expression varies greatly between individuals. We encourage healthcare professionals to identify the nature of this suffering and to invite patients and their relatives to openly discuss these issues and to proactively address the request.

Background: Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function and clinical predictors and neglects inter-individual differences. A better understanding of end-of-life trajectories, including what is shared among people and what is individually specific, is needed for an optimal provision of palliative care and health services planning.

Objectives: TRAJECT is a European Research Council-funded interdisciplinary project with a central aim to gain understanding of what is generalisable and what is individually specific in older people's end-of-life trajectories and in the circumstances that shape them.

Design: Convergent mixed-methods design including a quantitative longitudinal survey study, a serial narrative study and a mortality follow-back survey.

Methods and analysis: TRAJECT applies a novel methodological and analytical framework, examining trajectories through two distinct scientific lenses, both suited for uncovering variability as well as general principles: a structured quantitative approach to capture fluctuations in a standardised way, and an experience-focused qualitative approach to study the subjective stories and meanings behind changes in health. The findings of the quantitative and qualitative methods will be integrated through triangulation and by systematically threading key findings from one method across to the other. The research is conducted in Belgium.

Discussion: This project will lead to a new understanding of the varied ways in which older people's end-of-life trajectories unfold and which circumstances and experiences shape them. It will also reveal which elements of trajectories are shared across groups of people and which are individually specific. These new insights will provide a much-needed evidence base concerning groups at risk of poor well-being as they near death, which is needed to optimise palliative care practice, needs assessment, as well as health service planning.

Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.

Objective: To develop C-POS:UK (Children's Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties.

Design: Sequential mixed-methods approach to PCOM development, guided by Rothrock's measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology.

Methods: (i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation.

Results: (i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child's developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child's developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing.

Conclusion: A sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning.

The Fourth International Last Aid Conference was held from 4th to 6th September 2024 in Cologne, Germany. Seventy-three participants from 16 different countries and nationalities participated in the Fourth International Last Aid conference in the Mildred Scheel Academy and the Department of Palliative Medicine at the University Hospital of Cologne, Germany. The main topics of the conference were experiences with Last Aid Courses, research on public palliative care education (PPCE) and networks in community palliative care from different countries. The speakers from different countries around the world presented experiences with networking in community care, PPCE and lessons learned from the implementation of Last Aid Courses and different course formats in different countries. The contribution of research and the past and future work of the Last Aid International Research Group (LARGI) for the development of Last Aid was presented and discussed. This report provides an overview of the conference topics, the presentations by international experts from around the world and the most important results and implications.