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The cross-cultural adaptation demonstrated the suitability of the translated versions after semantic and cultural adjustments. The pre-final version showed satisfactory comprehension and semantic (CVC), idiomatic (CVC), conceptual (CVC), and cultural (CVC) equivalence, which enabled the development of the final version, named IDPALL-BR. The data obtained in the pre-test demonstrated content validity among the target audience, with a CVC = 0.909.
Significance of results
The Brazilian Portuguese version of this instrument has semantic validity and, therefore, shows potential for screening general and specialized PC needs.
Individuals with Parkinson’s disease (PD) often experience delays in initiating advance care planning (ACP) and palliative care (PC) which can impact their autonomy as cognitive function declines. Because patient autonomy and decision-making in ACP and PC for individuals with PD is insufficiently explored, this systematic review with narrative synthesis aims to fill this gap by reviewing the existing literature on these topics. It examines how awareness and timing influences ACP and PC implementation, how illness narratives shape decision-making and autonomy perceptions and the roles of caregivers and neurologists in supporting patient autonomy.
Methods
We conducted a systematic review with narrative synthesis of original research investigating ACP and PC in individuals with PD in accordance with PRISMA guidelines. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme checklists. Illness narrative types were categorized according to Arthur W. Frank’s framework (chaos, restitution and quest narratives). Findings were synthesized narratively and organized thematically in line with the review objectives.
Results
We included 42 studies using quantitative and qualitative methodologies involving 4154 individuals with PD and 2191 caregivers. Several themes were identified. Limited knowledge of ACP and PC explained its lower occurrence. ACP is often delayed due to uncertainty and misconceptions leading to late or crisis-driven discussions. Narrative medicine shows most individuals with PD share chaos narratives reflecting a focus on motor symptoms over autonomy. Lastly, individuals with PD expressed a need for greater autonomy support while ACP counseling is well received and improves understanding of care needs and end-of-life decisions.
Significance of results
Delays in initiating ACP and PC are associated with diminished autonomy in individuals with PD. Narrative medicine could help neurologists start ACP and PC discussions earlier, supporting autonomy and thereby aligning care with patient preferences.
Although it is known that parents caring for adolescent and young adult (AYA) cancer patients experience physical and psychological stress, to our knowledge, there are no reports regarding thiamine deficiency (TD) in this population.
Method
From a series of cancer patient caregivers, we identified TD in a mother caring for an AYA cancer patient and report our experience with this case, as treatment enabled the prevention of Wernicke encephalopathy (WE).
Results
A 49-year-old woman who had been caring for her 18-year-old son after he developed graft-versus-host disease following bone marrow transplantation for leukemia visited our psycho-oncology department at the recommendation of her son’s attending physician after witnessing her son experience a seizure. Thirteen months after the initial consultation, she developed difficulty climbing stairs, suggesting a possible physical abnormality. Blood tests revealed a markedly decreased hemoglobin level of 5.7 g/dL, and subsequent evaluation led to a diagnosis of iron deficiency anemia. Five days later, her thiamine level was found to be markedly reduced at 19 ng/mL (reference range: 24–66 ng/mL), and oral thiamine at a dose of 75 mg was initiated. No progression to WE, such as disturbance of consciousness, was observed.
Significance of the results
Parents caring for AYA cancer patients are profoundly affected both physically and psychologically by their child’s condition. In the future, attention should be paid to the nutritional status (including TD) of families caring for AYA cancer patients, as this may contribute to improving quality of life for both patients and their families.
To explore the stress experienced by nurses while addressing the needs of families during palliative and end-of-life care for children and young adults.
Methods
A meta-synthesis was conducted. Six online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, and Airiti) from 2014 to September 15, 2025 were searched.
Results
Of the 1,841 citations identified, 34 qualitative studies and 12 case reports were included. All included studies had adequate to strong methodological quality. Three themes emerged from the qualitative findings: (1) never seem to feel fully prepared; (2) sense of unfairness in conflicts of values; and (3) sheathing against traumatic bond attachment.
Significance of results
Nurses experience various stresses throughout the nursing process, which evoke avoidance responses. Supporting nurses is as crucial as providing family-centered palliative care to ensure a sustainable healthcare workforce. These findings demonstrate the importance of understanding how nurses perceive their stress in relation to provision of pediatric palliative care to help develop personal and team resilience.
To (1) identify clinical situations that may contribute to the experience of moral distress (MD) among professionals working with motor neuron disease (MND), (2) measure the occurrence and intensity of MD, and (3) explore associations with professional quality of life, turnover intention, and associated risk and/or protective factors.
Methods
A cross-sectional online survey was distributed to healthcare professionals working in MND services across Europe. Data were analyzed using descriptive and inferential statistics.
Results
In total, 230 responses from professionals across 17 European countries were analyzed from the international survey. And 67% of respondents indicated that MD resonated with their experience of working with MND. Those who considered leaving or changing their position due to the challenges associated with caring for this patient population were also more likely to report resonance with MD (χ2 = 7.772, p = 0.020). The intensity of MD was associated with reduced professional quality of life (burnout [β = 0.106, p < 0.05], and secondary traumatic stress [β = 2.881, p < 0.001]). A total of 24 clinical scenarios were identified as potential contributors to experiences of MD in this population. Across all professional groups, service-/organization-level factors were the most common and distressing barriers to providing effective MND care.
Significance of results
This study demonstrates that MD is experienced by healthcare professionals working with MND across Europe. MD was associated with reduced professional quality of life and increased intentions to leave or change positions, underscoring its potential implications for workforce retention and sustainability. The findings show that system/organization, patient/condition and family-level causes are the primary drivers of MD in this population. Future research should focus on evaluating the effectiveness of interventions designed to address these key drivers and mitigate the impact of MD among healthcare professionals working with MND.
To raise awareness of fertility preservation and counseling in palliative care and explore considerations for practice.
Methods
This case report describes the rapid decline and death of a 36-year-old man with astrocytoma. Despite early fertility discussions with the palliative care team, sudden clinical deterioration prevented semen collection prior to death. Following death, the spouse requested post-death sperm retrieval.
Results
Post-death sperm retrieval and cryopreservation were successfully completed within the viability window. To achieve this, urgent interdisciplinary coordination across palliative care, emergency medicine, reproductive specialists, and hospital legal and executive teams was required.
Significance of results
The case highlights the importance of early and ongoing fertility counseling for patients of reproductive age in palliative care. It demonstrates that clear pathways and coordinated systems can enable post-death sperm retrieval when aligned with patient and partner wishes. The development of evidence-based policies, training, and patient resources may reduce barriers and support clinicians to conduct sensitive, informed fertility discussions.
The intersection of medicine and Buddhist spiritual care in institutional end-of-life settings remains underexplored, particularly regarding post-death rituals. This qualitative study examines how Buddhist assisted chanting (zhunian, 助念) – a 24-hour continuous recitation of Amitabha Buddha’s name – functions as a model of holistic end-of-life care that addresses the spiritual, emotional, psychological, and relational dimensions of dying.
Methods
Semi-structured, in-person interviews were conducted with 34 participants (18 volunteers, 8 patients, and 8 family caregivers) at the Lotus Assisted Chanting Association housed within Cihai Hospital in Shenzhen, China, between June 22 and July 5, 2025. Interviews were conducted in Mandarin, transcribed, and anonymized. Coding was performed in NVivo N15 using an iterative thematic framework developed by open-coding an initial subset of transcripts.
Results
Three care frameworks emerged: (1) spiritual care, including adherence to end-of-life Buddhist practices, acceptance of death, belief in rebirth, and release of worldly attachments; (2) emotional and psychological care, encompassing companionship, peace and tranquility, and financial burden alleviation; and (3) reverse care, in which dying patients exercised personal agency and tended to those around them by resisting over-medicalization, expressing concern for caregivers, and transforming caregiving into an opportunity to practice filial piety and strengthen faith.
Significance of results
These findings characterize Buddhist assisted chanting as a reciprocal model of end-of-life care that extends care beyond the moment of death. Dying patients act as moral agents who tend to those around them, challenging the unidirectional caregiver–recipient model that underlies most palliative care research. These contributions show how culturally and spiritually informed palliative care prepares families for loss and shapes how patients find meaning at the end of life. More broadly, this study illustrates how Buddhist ritual frameworks can render dying as a humanistic and mindful process.