BMC Palliative Care最新文献

Background: Children eligible for palliative care represent a highly diverse population, making comprehensive, family-centered approaches essential. As many families value being at home and maintaining their daily activities and routines, healthcare services need to be tailored to each family's unique circumstances. Health technology offers promising support for home-based pediatric palliative care and has been suggested to enhance communication, coordination, and continuity of care. Despite growing interest, a significant research gap regarding the systematic integration of health technology into pediatric palliative care, particularly in understanding how digital tools can be meaningfully embedded into everyday life. Given this research gap, this study aimed to explore parents' perspectives regarding the use of health technology in home-based pediatric palliative care, with a particular focus on facilitating communication with healthcare professionals.

Methods: This qualitative exploratory study was conducted with five focus groups comprising 18 Norwegian parents of children aged 1.5-18 years old with life-threatening or life-limiting conditions. Data were analyzed using reflexive thematic analysis.

Results: Three themes were created in the analysis: (1) Digital consultations as tools for reducing disruptions to everyday life; (2) Who needs to know what? Balancing access and security in electronic health records; and (3) Keep the health technology simple.

Conclusion: Health technology has the potential to improve flexibility, reduce travel burdens, and support everyday life for families in which a child is receiving home-based pediatric palliative care. Its effectiveness depends on usability, integration with healthcare systems, and the parents' ability to control access to their child's health information. Ensuring both accessibility and security is essential for building trust in health technology. Successful implementation of health technology requires co-design with users and stakeholders to create sustainable solutions that meet the complex needs of children receiving home-based palliative care.

Background: Out-of-pocket health expenditure (OOPE) is a significant public health concern in India, with an estimated 55 million individuals pushed into poverty due to healthcare expenses. Evidence on the burden and patterns of OOPE among older adults requiring palliative care, and the financial strain faced by them, is limited.

Methods: Data from the Longitudinal Ageing Study in India (LASI) identified 2903 older adults aged 60 years and more with palliative care needs using the Supportive and Palliative Care Indicator Tool for Low-Income Settings (SPICT-LIS). Annual healthcare expenditure and OOPE were estimated separately for outpatient care and hospitalisation. At the household level, OOPE and Catastrophic Healthcare Expenditure (CHE) were calculated for the last month. CHE prevalence was mapped across India's states. The Kruskal-Wallis test and Multivariate logistic regression were used to assess differences in mean expenditure and identify household factors associated with CHE, respectively.

Results: The mean annual health expenditure for older adults with palliative care needs was ₹5002 for outpatient care and ₹36,263 for hospitalisation. OOPE accounted for 94% of outpatient and 82% of hospitalisation costs. Significant hospitalisation costs were associated with cancers (₹267.797), heart diseases (₹93,003), and stroke/neurological illnesses (₹54,913). Distress financing methods, such as liquidating savings (24.4%) and taking loans (26.5%), were standard. Nearly one-third of household health spending was attributed to older adults in need of palliative care, with 21.6% of these households facing CHE.

Conclusion: The healthcare needs of older adults requiring palliative care are predominantly funded out of pocket. One in five households with older adults needing palliative care faces catastrophic healthcare expenses, highlighting the need for expanded palliative care programs and health insurance to alleviate economic hardships.

Background: Meaningful and proactive end-of-life conversations are crucial for achieving person-centered care and supporting the concept of a "good death". However, death-related taboos and family-centered values continue to hinder such conversations in East Asian societies. Innovative and culturally sensitive strategies are needed to encourage early reflection and dialogue on end-of-life care preferences among healthy older adults.

Aim: This study describes the development and preliminary feasibility of a culturally grounded end-of-life conversation game, Tree of Peaches, designed to facilitate discussions about what matters most at the end of life and related care preferences.

Methods: The development of Tree of Peaches followed a two-phase design process, including synthesizing literature and consulting with a panel of experts to identify and validate culturally relevant attributes associated with a good death and hospice care. An exploratory descriptive study was then conducted to assess the game's feasibility among 16 healthy older adults residing in a senior community in northern Taiwan. Each small-group session involved self-reflection, prioritization of values, and group discussion. Quantitative data on card selection and weighting were analyzed descriptively; qualitative data were analyzed using qualitative content analysis.

Results: The game engaged participants in reflective dialogues on values and preferences for end-of-life care. Participants prioritized values related to dignity, followed by family emotional protection, physical comfort, and the desire to die at home. Factors discouraging hospice care included self-sacrifice reassurance to preserve family hope, optimistic beliefs, and unfamiliarity with hospice services. The findings highlight how participants navigated tensions between personal values, family love, and cultural expectations in shaping their end-of-life care preferences.

Conclusions: This study suggests that Tree of Peaches, through the integration of gamification and culturally sensitive design, offers a structured platform that may facilitate reflective and value-based discussions about end-of-life preferences among healthy older adults. The findings provide insights into the interplay between personal values and family concerns, contributing to a deeper understanding of how autonomy, interdependence, and a "good death" are negotiated within Taiwanese culture. This tool shows potential for adaptation in broader contexts to support proactive end-of-life conversations, which warrants further evaluation in future studies.