Palliative Care and Social Practice最新文献

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.

Background: Bereavement support is considered a core standard of care for paediatric palliative care (PPC) teams. Support for grieving siblings can present unique challenges. Developmentally appropriate care can help children navigate their grief experience.

Objectives: To describe the provider perspectives (mission and development) of bereavement care for siblings, and to describe the bereavement follow-up interventions offered for siblings by hospital-based PPC teams nationwide.

Design and methods: Qualitative study conducted by semidirected telephone interviews. At least one member from each PPC team was interviewed. Interviews transcribed verbatim were analysed using grounded theory.

Results: Twenty-one teams participated (response rate 91%). Most teams (80%) provided individual psychotherapy to families, and a few (28%) offered group interventions. PPC teams endeavour to expand their bereavement services and create a stronger collaboration network with community services. However, limited human resources, lack of facilities and financing, and geographical distances were frequent obstacles to bereavement care program development.

Conclusion: PPC teams support bereaved siblings as an integral part of palliative care. Although PPC teams cannot meet all the needs of bereaved families, they can serve as important reference points to consolidate knowledge of available local resources and offer well-informed guidance to families and community users. Greater public awareness of childhood bereavement and engaging with community structures could help overcome some of the common obstacles to service development. Further studies are warranted in evaluating bereavement services in France and in other healthcare systems.

Background: Housing insecurity can be linked to bereavement and is often caused or exacerbated by loss of household income and restrictions to some tenancy agreements. Housing insecurity can result in significant practical disruption, increase risk of adverse health outcomes and decrease quality of life. However, despite the impact of housing insecurity on experiences following bereavement, little is known about its underlying risk factors.

Aim: To investigate characteristics associated with housing insecurity, defined as odds of having to move home following bereavement.

Methods: This exploratory, cross-sectional analysis used data from an online survey commissioned by Marie Curie in November 2023. The survey investigated administrative difficulties faced by UK residents who had experienced a close bereavement in the past five years. Logistic regression modelling was used to quantify the strength and direction of the association between characteristics and odds of having to move home.

Results: In all, 2901 bereaved people were included in the analysis. The incidence of having to move home following bereavement was 11.2% (n = 324). Characteristics associated with significantly increased odds of having to move in fully adjusted models included being younger, being male, renting privately, bereavement following the death of a younger person, being bereaved in the last 12 months and completing practical tasks following bereavement, a proxy measure for the relationship between the bereaved and deceased. Living in Wales, living in Scotland and living in Northern Ireland were each associated with significantly lower odds of having to move compared with living in England. Data on ethnicity or socioeconomic factors were unavailable.

Conclusion: Certain groups of people may have an increased risk of having to move home following bereavement. This highlights inequity in experiences of bereavement and emphasises the need for research to explore other aspects of housing insecurity and the means to address potential inequities.

Background: Despite extensive theoretical debate, empirical research on medical aid in dying (MAID) largely has disregarded broader, contextual factors as potential correlates of attitudes in hospice clinicians.

Objective: Informed by institutional theory and neofunctional attitude theory, the objective of the current study was to quantitatively examine hospice clinicians' attitudes toward MAID as functions of institutional characteristics relating to (Aim 1) individual adherence to hospice values and (Aim 2) state law.

Design: We used a cross-sectional design.

Methods: A national convenience sample of interdisciplinary hospice clinicians recruited through US professional membership associations self-administered an online survey. Measures included attitudes toward MAID, attitudes toward the hospice philosophy of care, attitudes toward the principle that hospice care should not hasten death, orientation toward patient-centeredness, professional exposure to working in a state where MAID is legal, and demographic characteristics. Data were analyzed via a partial proportional odds model.

Results: The sample (N = 450) comprised hospice physicians (227 [50.4%]), nurses (64 [14.2%]), social workers (74 [16.4%]), and 85 chaplains (85 [18.9%]). Results of the partial proportional odds model indicated that professional exposure to working in a state where MAID is legal was significantly associated with over twice the cumulative odds of MAID support. Although neither orientation toward patient-centered care nor attitudes toward the hospice philosophy of care was significantly associated with attitudes toward MAID, results showed that disagreement with the narrower principle that hospice care should not hasten death was significantly associated with 6-to-7 times the cumulative odds of MAID support.

Conclusion: Findings suggest that contextual factors-namely, the environments in which hospice clinicians practice-may shape attitudes toward MAID. Unanticipated results indicating that hospice professionals' adherence to hospice values was not significantly associated with attitudes toward MAID underscore the need for further research on these complex associations, given previous theoretical and empirical support.