Palliative Care and Social Practice最新文献

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.

Background: The inclusion of palliative care in policy has been encouraged internationally, and gradually implemented, including in Sweden. Care should be driven by policy; hence, examining how palliative care is included in national policy documents is paramount.

Objectives: This study aimed to examine how palliative care is included in national disease-specific policy documents for adults with chronic conditions, cancer and non-cancer, with potential palliative care needs.

Design: Document analysis.

Methods: A document analysis of Swedish policy documents for different disease-specific groups with severe chronic conditions, cancer and non-cancer, was performed. In total, 96 documents were analysed.

Results: How palliative care was included in the policy documents varied from mentioning the term without explanation to detailed discussion regarding palliative care practice. Such discussion encompassed several conceptualisations of palliative care: defined through authorities' definitions; as care of dying persons; integrated with disease-specific care and treatment; limited to disease-specific medical treatments or based on detail regarding certain key elements of palliative care such as specialised palliative care and end-of-life conversations.

Conclusion: There may be large variations in how palliative care is conceptualised in national disease-specific policy documents, as disclosed by this analysis of the Swedish case. Limiting palliative care to disease-specific medical treatments (most commonly palliative oncological treatments) or the care of dying persons limits its scope in ways contrary to current evidence supporting early integrated palliative care. The lack of palliative care recommendations adapted for each specific diagnosis indicates a gap in policy. To promote equal access to palliative care regardless of patients' diseases or medical conditions, the importance of how palliative care is included in national policy documents needs to be further acknowledged and discussed - with palliative care consistently included in such documents.

Background: The perspectives of children with life-threatening or life-limiting (LT/LL) conditions have predominantly been conveyed through their parents rather than heard from the children themselves. Despite an increase in studies focusing on children's perspectives in pediatric palliative care, this research remains limited, particularly in including children who are unable to express themselves orally.

Objective: This study seeks to address gaps in existing knowledge, especially the limited inclusion of children's perspectives and the exclusion of children with communicative and cognitive disabilities. The aim of this study was to explore the lived experiences of children living with LT/LL conditions.

Design: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice.

Methods: Twelve children with cancer or genetic conditions participated. Due to the children's varying cognitive and communicative abilities, multiple data collection methods were employed to capture the children's perspectives, including interviews, interactions, descriptions of the children's non-verbal expressions, and an adapted photo elicitation method. Data were analyzed using thematic analysis.

Results: The findings showed that the children's attention revolved around life rather than illness. The analysis revealed the presence of three themes: wanting to engage in life, being dependent on familiar relations, and the importance of cherished items.

Conclusion: Professionals across various levels within pediatric palliative care should acknowledge children's desire to engage in life despite serious illness and facilitate participation. Practices should be implemented to support children's agencies and expressions of what is important to them. This recognition can guide care plans and interventions at all levels of pediatric palliative care when a child is living with an LT/LL condition. The study emphasizes that children with LT/LL conditions are children first and foremost, with a fundamental need to participate in meaningful activity, just like any other child.

Background: End-of-life care for patients with advanced cancer can impose a significant financial burden. However, data on the economic impact of end-of-life care in low- and middle-income countries are limited.

Objective: This study aims to compare the costs associated with palliative care units (PCUs) and non-PCU settings for cancer patients in Iran.

Design: We designed a retrospective study at the largest hospital in the country.

Methods: We conducted a comprehensive evaluation of hospitalization costs and care service delivery for 150 patients in the final 5 days of life, who were admitted to the largest hospital complex in Iran. All costs were adjusted based on the 2018 USD exchange rate.

Results: Among the 150 patients included in the study, 56 (37%) were admitted to the PCU. The average total treatment cost during the final 5 days of life was three times higher in general wards compared to PCUs. In non-PCU settings, the total cost of care during this period amounted to $2873, while in PCU settings, it was $909.63.

Conclusion: The establishment of PCUs within tertiary hospitals and the provision of palliative consultation services to patients with advanced cancer can yield significant benefits, even when resources are limited.

Background: Every healthcare professional (HCP) in the Netherlands is expected to provide palliative care based on their initial education. This requires national consensus and clarity on the quality and goals of palliative care education and accessible education opportunities nationwide. These requirements were not met in the Netherlands, posing a major obstacle to improving the organization and delivery of palliative care. Therefore, a program, Optimizing Education and Training in Palliative Care (O²PZ), was established to improve palliative care education on a national level.

Objectives: The main task of the O²PZ program from 2018 to 2021 was to implement and improve palliative care education in initial education for nursing and medical professionals. The program's ultimate goal was that every HCP be sufficiently educated to provide high-quality generalist palliative care.

Design: The O²PZ program consists of four projects to improve and consolidate generalist palliative care education nationwide.

Methods: All projects used a participatory approach, that is, participatory development, implementation, and co-creation with stakeholders, mainly HCPs and education developers. Appreciative inquiry was used to assess, improve, and integrate existing local palliative care education initiatives.

Results: (1) Establishment of an Education Framework for palliative care for all HCPs, including an interprofessional collaboration model; (2) optimization of palliative care education in the (initial) curricula of vocational education institutions and (applied) universities; (3) establishment of an online platform to disseminate materials to improve palliative care education; and (4) installment of seven regional palliative care education hubs, of which one hub was devoted to pediatric palliative care, as well as one national hub.

Discussion: We discuss some lessons learned and challenges in accomplishing the goals of the O²PZ program in 2018-2021 and address how these challenges were dealt with. We maintain that co-creation with stakeholders at policy, organizational, and operational levels, as well as ongoing communication and collaboration, is essential to consolidating and implementing results.

Conclusion: Over the past 4 years, we have improved generalist palliative care education nationwide for all HCPs through four projects in which we collaborated closely with stakeholders. This has resulted in more attention to and implementation of palliative care in education, a national Education Framework for palliative care, including an interprofessional collaboration model, an online platform for palliative care education, and palliative care education hubs covering all regions of the Netherlands.

Cancer is one of the leading causes of mortality, with new cases expected to rise. Medical advances increase cure rates and prolong patient lives, but survivorship involves high symptom burden, loss of function and emotional distress. Improving patient-centred care (PCC) and quality of life throughout the care process is essential. Key to this improvement are systematic use of patient-reported outcome measures (PROMs) and patient-centred care pathways (PCCPs). Despite established benefits, current cancer care focuses on tumour-centred care approaches often neglecting the patient perspective. Evidence-based PCC guidelines fail to be routinely incorporated into clinical practices. The Horizon 2020-funded European MyPath project aims to address these gaps by developing, implementing and evaluating digital PCCPs with PROMs. MyPath will be tailored to enhance the organisational contexts of cancer centres across Europe through the application of implementation science strategies. This paper describes the current state of applying PCC in routine cancer care and presents a forward-looking perspective on how the MyPath project can successfully adopt and implement digital PROMs across countries. A literature search was conducted to provide the state-of-the art.

Background: Home-based palliative care is a growing trend, necessitating a deeper understanding of the unique challenges faced by professional staff members in this setting. The shift to home-based care has been driven by advances in technology, changing demographics, and a move toward more patient-centered approaches. As a care setting, the home environment offers distinct characteristics, presenting both advantages and drawbacks for patients and healthcare providers.

Objectives: This study aims to explore the experiences and perceptions of professional staff members providing palliative care in patients' homes.

Design: A qualitative descriptive study.

Methods: Qualitative study with 36 home-based hospice professionals using questionnaires and interviews. Thematic analysis identified key themes in staff experiences and challenges.

Results: The central theme of "The Professional Guest" highlights the hybrid identity and boundary role professional staff members must navigate, being both medical professionals and guests in the patient's domain. Four sub-themes emerged: (1) Observing and Applying, emphasizing the conscious scanning of the home environment to build trust and tailor care plans; (2) Asking for Permission, respecting the patient's territory and adapting to their norms; (3) Expecting the Unexpected, maintaining flexibility and improvising in unfamiliar situations; and (4) Preparing the Ground for Your Absence, equipping patients and families with comprehensive self-care guidance during professional staff members' absences.

Conclusion: The "Professional Guest" phenomenon captures the complexities of providing care in patient's homes, necessitating a delicate balance between professionalism and personal vulnerability. Specialized training programs and policies should be developed to support professional staff members in navigating this hybrid identity and effectively negotiating the boundaries between professional and personal spheres.