Explore humanitarian healthcare professionals’ (HCPs) perceptions about implementing children’s palliative care and to identify their educational needs and challenges, including learning topics, training methods, and barriers to education.

Humanitarian HCPs were interviewed about perspectives on children’s palliative care and preferences and needs for training. Interviews were transcribed, coded, and arranged into overarching themes. Thematic analysis was performed using qualitative description.

Ten healthcare workers, including doctors, nurses, psychologists, and health-project coordinators, were interviewed. Participants identified key patient and family-related barriers to palliative care in humanitarian settings, including misconceptions that palliative care was synonymous with end-of-life care or failure. Health system barriers included time constraints, insufficient provider knowledge, and a lack of standardized palliative care protocols. Important learning topics included learning strategies to address the stigma of serious illness and palliative care, culturally sensitive communication skills, and pain and symptom management. Preferred learning modalities included interactive lectures, role-play/simulation, and team-based case discussions. Participants preferred online training for theoretical knowledge and in-person learning to improve their ability to conduct serious illness conversations and learn other key palliative care skills.

Palliative care prevents and relieves serious illness-related suffering for children with life-threatening and life-limiting conditions; however, most children in humanitarian settings are not able to access essential palliative care, leading to preventable pain and suffering. Limited palliative care knowledge and skills among HCPs in these settings are significant barriers to improving access to palliative care. Humanitarian HCPs are highly motivated to learn and improve their skills in children’s palliative care, but they require adequate health system resources and training. These findings can guide educators in developing palliative care education packages for humanitarian HCPs.

In home-based care for severely ill patients, family caregivers’ contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers’ experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.

This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.

The results indicate that the intervention resonated with the family caregivers’ situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient’s progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.

This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.

People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success – coordination and family caregiver – are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.

Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.

Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.

Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated “facilitator” or single point of contact for families, as well as the development of tailored communication strategies.

To explore the potential of incorporating personally meaningful rituals as a spiritual resource for Western secular palliative care settings. Spiritual care is recognized as critical to palliative care; however, comprehensive interventions are lacking. In postmodern societies, the decline of organized religion has left many people identifying as “no religion” or “spiritual but not religious.” To assess if ritual could provide appropriate and ethical spiritual care for this growing demographic requires comprehensive understanding of the spiritual state and needs of the secular individual in postmodern society, as well as a theoretical understanding of the elements and mechanisms of ritual. The aim of this paper is to provide a comprehensive and theoretically informed exploration of these elements through a critical engagement with heterogeneous literatures.

A hermeneutic narrative review, inspired by complexity theory, underpinned by a view of understanding of spiritual needs as a complex mind–body phenomenon embedded in sociohistorical context.

This narrative review highlights a fundamental spiritual need in postmodern post-Christian secularism as need for embodied spiritual experience. The historical attrition of ritual in Western culture parallels loss of embodied spiritual experience. Ritual as a mind–body practice can provide an embodied spiritual resource. The origin of ritual is identified as evolutionary adaptive ritualized behaviors universally observed in animals and humans which develop emotional regulation and conceptual cognition. Innate human behaviors of creativity, play, and communication develop ritual. Mechanisms of ritual allow for connection to others as well as to the sacred and transcendent.

Natural and innate behaviors of humans can be used to create rituals for personally meaningful spiritual resources. Understanding the physical properties and mechanisms of ritual making allows anyone to build their own spiritual resources without need of relying on experts or institutionalized programs. This can provide a self-empowering, client-centered intervention for spiritual care.

Supporting family caregivers (FCs) is a critical core function of palliative care. Brief, reliable tools suitable for busy clinical work in Taiwan are needed to assess bereavement risk factors accurately. The aim is to develop and evaluate a brief bereavement scale completed by FCs and applicable to medical staff.

This study adopted convenience sampling. Participants were approached through an intentional sampling of patients’ FCs at 1 palliative care center in Taiwan. This cross-sectional study referred to 4 theories to generate the initial version of the Hospice Foundation of Taiwan Bereavement Assessment Scale (HFT-BAS). A 9-item questionnaire was initially developed by 12 palliative care experts through Delphi and verified by content validity. A combination of exploratory factor analysis (EFA), reliability measures including items analysis, Cronbach’s alpha and inter-subscale correlations, and confirmatory factor analysis (CFA) was employed to test its psychometric properties.

Two hundred seventy-eight participants conducted the questionnaire. Three dimensions were subsequently extracted by EFA: “Intimate relationship,” “Existential meaning,” and “Disorganization.” The Cronbach’s alpha of the HFT-BAS scale was 0.70, while the 3 dimensions were all significantly correlated with total scores. CFA was the measurement model: chi-squared/degrees of freedom ratio = 1.9, Goodness of Fit Index = 0.93, Comparative Fit Index = 0.92, root mean square error of approximation = 0.08. CFA confirmed the scale’s construct validity with a good model fit.

This study developed an HFT-BAS and assessed its psychometric properties. The scale can evaluate the bereavement risk factors of FCs in clinical palliative care.

More than 50% of patients with dementia visit the emergency department (ED) each year. Patients with dementia experience frequently unrelieved symptoms that can benefit from palliative care. Response to palliative care needs in the ED can be quite challenging and access to palliative care is generally scarce. The aim of this scoping review is to assess ED use and responsiveness to palliative care needs of patients with dementia in their last year of life.

A scoping literature review following the Joanna Briggs Institute methodology. Electronic search of the literature was undertaken in Medline (PubMed), Web of Science, Scopus, Scielo, and APA PsycInfo, last updated on 19 February 2024.

Twenty-four studies were identified and confirmed that patients with dementia frequently resort to the ED near the end of life, frequently more than once in their last year of life. Eight studies directly addressed palliative care needs, suggesting significant rates of palliative care needs among patients with dementia and in comparison, to other oncological or non-oncological conditions. Infections and neuropsychiatric symptoms were the main reasons of admission to the ED. Access to palliative care was confirmed to be low.

This scoping review indicates that patients with dementia frequently resource to the ED in their last year of life with unmet palliative care needs. Although scarce access to palliative care and the existence of important barriers in the ED, palliative care intervention in this setting can be seen as an opportunity to attend palliative care needs and referral to palliative care services.