BMC Palliative Care最新文献

Background: Life-limiting illnesses often lead to complex care needs and multifaceted support requirements for both severely ill persons and their informal caregivers, particularly at the end of life. The extent to which these needs are met may be significantly influenced by available economic and social resources. However, an in-depth understanding of how such resources shape end-of-life experiences is still missing. Therefore, our systematic review of qualitative studies aimed to explore and understand the perceptions of severely ill persons at the end of life and their informal caregivers regarding the relevance and consequences of their economic and social resources in varying settings of high-income countries.

Methods: We followed the PRISMA guideline and searched MEDLINE via PubMed, CINAHL and PsychInfo from inception, which means the earliest available records in each database to October 2025. In addition, we searched reference lists of relevant studies. Three authors (DB, GM, MM) extracted the data, and four authors (DB, GM, FO, MM) assessed study quality using the JBI Critical Appraisal Checklist for Qualitative Research. The ratings were verified through mutual double checks. Any discrepancies were resolved through discussion with EB. We synthesized the data using qualitative content analysis according to Schreier.

Results: In total, we included 20 studies reporting on various economic and social resources, which were sometimes interdependent. In the overarching category of economic resources, we identified three subcategories: (1) savings and assets, (2) workplace resources of informal caregivers, and (3) state support and insurance. The identified social resources could be structured into four subcategories according to House's Social Support Theory: emotional support, appraisal support, instrumental support, and informational support.

Conclusions: Severely ill persons and their informal caregivers face major emotional, practical, and organizational challenges at the end of life, and the extent of their burden is closely linked to available economic and social resources. Informal caregivers, who both provide and need support, require targeted professional and peer interventions to manage these demands and protect their well-being. Compassionate Communities appear to be a possible approach to reducing psychological burden, social isolation, and caregiver overload.

Background: Perinatal palliative care (PPC) is increasingly recognized as an essential component of quality maternity and neonatal care. Despite international calls for structured programs, little is known about how PPC is provided in everyday healthcare systems and how parents and professionals experience it. This study explored PPC practices in Flanders (Belgium), focusing on challenges and opportunities for improving care.

Methods: We conducted a qualitative study using semi-structured face-to-face interviews with healthcare professionals experienced in PPC, and with parents who had lost a child in the perinatal period. A total of 22 healthcare professionals and 18 parents participated. Framework analysis was employed to systematically analyze the interview data. The findings were compared with the results of a recent systematic review which synthesized existing literature and outlined the key components of PPC.

Results: In the absence of a formal PPC team, considerable effort was required to coordinate care and ensure effective information transfer between hospitals and departments. Palliative care training was largely informal, with most learning occurring on the job. In contrast to findings reported in the international literature, interview data revealed that external organizations were frequently and systematically involved in PPC. The recognizability of healthcare providers was identified as a key factor in parental psychosocial support. Parents' expressions of gratitude, respect, and satisfaction were experienced by caregivers as highly supportive. In terms of shared decision-making, several parents expressed a need for clearer explanations of medical scenarios, more directive support from physicians, and early exploration of their preferred decision-making style. Simultaneously, both parents and professionals reported feeling limited by legal constraints. Additional needs included improved communication amongst all involved, greater structural support and infrastructure adapted to palliative care needs.

Conclusions: Both parents and healthcare providers pointed out the need for a multidisciplinary team to coordinate PPC across time and disciplines. Parents expressed more dissatisfaction with communication than with the purely medical aspects of care. The importance of caregiver introductions and role clarity, dedicated PPC training and experienced staff was stressed. A neutral, non-directive approach to decision-making did not suit all parents, underscoring the need to tailor support to individual preferences.

Background: Individuals with advanced cancer frequently have substantial physical, psychological, and spiritual obstacles. Spiritual health has garnered growing attention as a crucial element of palliative care, particularly in enhancing patients' quality of life (QoL) and psychological resilience. Nevertheless, studies regarding the spiritual well-being of advanced cancer patients in Macao remain scarce. This study seeks to investigate the spiritual health and narrative experiences of advanced cancer patients in Macao, while comparing the results with worldwide perspectives to emphasize cultural particularities and implications for holistic care.

Method: This study employed a qualitative narrative research approach to perform semi-structured interviews with five patients suffering from advanced cancer in a palliative care centre in Macao from March to May, 2025. Utilizing the FICA model (Faith, Importance, Community, and Address) as a framework. Themes were derived by story analysis, and the credibility of the findings was validated through collaborative developing between the researcher and the participants.

Result: Five primary themes were identified in the study: (1) psychological adjustment and emotional transformation; (2) social connection; (3) family support; (4) spiritual practice and self-healing; and (5) life reflection and experience transmission. Culture-specific findings encompassed the significance of familial support, the amalgamation of traditional culture and spiritual practices (e.g., Buddhism beliefs), and the impact of nurse-patient narrative exchanges in addressing spiritual needs.

Conclusion: Spiritual health is a critical component of the comprehensive treatment of patients with advanced cancer. Narrative research effectively elucidates patients' spiritual demands and coping mechanisms. This study advocates for the use of spiritual therapies grounded in culture and narrative understanding into palliative care procedures.

Background: The number of older individuals in need of care is projected to increase in the coming years. As support from family members is becoming increasingly limited, often due to geographical distance, non-kin caregivers, such as neighbours, friends, and acquaintances, are assuming an increasingly significant role in providing support. The present scoping review aimed to identify, describe and synthesise existing evidence on the experiences, individual capacities and support needs of informal non-kin caregivers of patients at the end of life, as well as the support services available to them.

Methods: The review followed the methodological framework of Arksey and O'Malley. A search was conducted in four electronic databases (CINAHL, PsycInfo, PubMed, Web of Science Core Collection) on 10 October 2022 using a highly sensitive search strategy, and updated on 8 January 2025. Reference lists of the included studies were also hand-searched.

Results: Two authors independently reviewed the titles and abstracts of 2,931 articles and screened 128 full texts. Seven articles met the inclusion criteria, and a further three articles were identified through hand searching. The analysis revealed seven overarching themes: (1) the duration and extent of non-kin caregiving, (2) caregiving relationships, (3) enabling care at home, (4) support wishes and needs, (5) modes of support, (6) non-kin caregivers as 'hidden' caregivers and (7) caregiving burden. Notable research gaps were identified, particularly regarding the low visibility of friends and neighbours in informal care, the lack of clear differentiation from family caregivers and the limited access to appropriate support and palliative care services.

Conclusions: The findings showed that informal non-kin caregivers of seriously ill patients at the end of life remain under-recognised, despite the significant responsibilities they undertake. Future research is needed to improve access to tailored support and to distinguish their experiences from those of family caregivers.

Background: During the COVID-19 pandemic, face-to-face volunteer support for patients and families was not possible, making it necessary to explore alternative ways of reducing distress. New technologies emerged as a valuable resource, facilitating communication and information exchange, and supporting volunteer tasks.

Objective: To explore the perceived usefulness of new technologies in volunteering among different stakeholders (patients, relatives, professionals, and volunteers), and to examine how these perceptions relate to participants' technological profiles.

Design: A cross-sectional mixed-methods study was conducted to explore attitudes and preferences toward new technologies. Quantitative data were analyzed descriptively and through regression models, while qualitative data were examined using thematic analysis.

Methods: Participants were recruited through consecutive non-probabilistic sampling and included patients, relatives, healthcare professionals, and volunteers from various care settings. Quantitative measures assessed perceptions of usefulness, benefits, barriers, and satisfaction with volunteering, alongside the TechPH tool to profile technological attitudes. Qualitative data were collected through interviews and focus groups using open-ended questions to explore the perceived usefulness of new technologies in palliative care volunteering. Quantitative analysis involved descriptive statistics, Pearson correlations, ANOVA, and multiple linear regression. Qualitative data were analyzed using thematic analysis.

Results: A total of 402 individuals participated: 50 patients, 45 relatives, 136 professionals and 171 volunteers. Perceived usefulness of new technologies varied: 50% of patients, 63.6% of relatives, 77.8% of professionals, and 78.2% of volunteers found them beneficial. Three themes emerged from qualitative analysis: difficulties in new technologies use (mainly among patients), perceived benefits (e.g., enhanced communication), and the need for volunteer training in digital skills.

Conclusions: All stakeholder groups recognized new technologies as useful for volunteer support in palliative care, with the highest perceived usefulness among professionals and volunteers. However, professionals were the least involved in volunteer support. Patients reported the lowest acceptance, preferring a hybrid model in which technology complements, but does not replace, in-person support.

Background: The increasing incidence of patients requiring palliative care warrants holistic care approaches for patients where caregivers play vital roles. Understanding caregiver resilience and its determinants is crucial for developing targeted interventions to strengthen care for both patients and their caregivers.

Objective: To assess resilience levels among caregivers of palliative care patients and identify associated factors using the Connor-Davidson Resilience Scale (CD-RISC).

Methods: A cross-sectional study was conducted in five palliative care centers in Nepal from 2023 to 2024 including 422 family caregivers of palliative care patients identified using the Supportive and Palliative Care Indicator Tool for Low-Income Settings (SPICT-LIS). Data were collected via demographic questionnaires and the validated Nepalese version of the CD-RISC. Resilience scores were reported as median and interquartile range. Associations were examined using non-parametric tests (Mann-Whitney U and Kruskal-Wallis H), and effect sizes (epsilon-squared) were calculated for significant findings. Statistical significance was set at p-value < 0.05 and 95% confidence intervals and data analysis were performed in SPSS version 20 with effect size calculation in R-software.

Results: The caregivers had a mean age of 38.03 years (SD ± 12.3), with 51.2% being male. The resilience scores ranged from 13 to 100 (median 70.5). Caregiver resilience was significantly associated with perceived health status (p < 0.001) and patient diagnosis (p = 0.002). Caregivers with "very good" or "good" perceived health demonstrated higher resilience scores (median 74 and 73, respectively). Those caring for patients with cardiopulmonary conditions presented the highest resilience (median 75), whereas chronic kidney disease caregivers presented the greatest variability in resilience scores.

Conclusions: The patient's diagnosis and the caregivers' perceived health status were important determinants of caregiver resilience in Nepal's palliative care context. These results emphasize that routine palliative treatment in Nepal and other low and middle income countries should incorporate routine caregiver health assesments and support. Educational initiatives and support groups tailored to a particular diagnosis can assist caregivers in overcoming the burden of care and build resilience. In addition to community based programs that honor cultural caregiving roles, training healthcare staff to recognize and support caregiver needs may reduce caregiver burden and improve the sustainability of care.