OBJECTIVES:Individuals living with advanced pancreatic cancer (APC) face a poor prognosis and high symptom burden. Although exercise training is an evidence-based approach in improving physical and psychological health outcomes in those living with and beyond a cancer diagnosis, there is limited research exploring its role and integration within advanced pancreatic care. The aim of this study was to explore the exercise experiences and perspectives of individuals living with APC in Canada. METHODS:Using a qualitative interpretive description methodology, we conducted semi-structured interviews with 6 individuals diagnosed with advanced (stage III or IV) exocrine pancreatic cancer from across Canada. Interviews were transcribed verbatim, and transcripts were analyzed using reflexive thematic analysis. Inductive and deductive analysis was conducted using the Behaviour Change Wheel and Theoretical Domains Framework as guiding lenses. RESULTS:Three themes were identified impacting how individuals living with APC perceive and experience exercise: (1) Taking control of my journey; (2) Building the motivation; and (3) If it was a program for me. SIGNIFICANCE OF RESULTS:This study highlights aspects of the perception of exercise in pancreatic cancer care among individuals living with advanced disease in Canada. Integration of progressive programming, realistic goal setting, and fostering of a supportive environment were identified as important considerations for the care context.
OBJECTIVES:Advanced pancreatic and gastric cancers are associated with high symptom burden and psychological distress, potentially threatening patients' sense of dignity. Although Dignity Therapy (DT) has mainly been used in end-of-life care, its potential role earlier in the disease trajectory is emerging. This exploratory study investigated the feasibility and potential impact of DT during active chemotherapy on emotional distress, dignity-related distress, and quality of life (QoL). METHODS:Thirty patients with advanced pancreatic or gastric cancer undergoing chemotherapy received a 3-session DT intervention over approximately 3 weeks. Emotional distress, dignity-related distress, and QoL were assessed at baseline (T0), post-intervention (T1), and 1-month follow-up (T2) using the Distress Thermometer, Patient Dignity Inventory, and EORTC Quality of Life Questionnaire-Core 30. Exploratory analyses assessed changes over time. RESULTS:Emotional distress decreased significantly from T0 (M = 6.67, SD = 1.47) to T1 (M = 3.13, SD = 1.43; p < .001) and remained lower at T2 (M = 3.50, SD = 1.53; p < .001). Dignity-related distress also decreased from T0 (M = 37.1, SD = 3.03) to T1 (M = 27.9, SD = 1.79; p < .001), with sustained improvement at T2 (M = 25.4, SD = 12.86; p < .01). QoL remained stable. Participants reported high acceptability of the intervention. SIGNIFICANCE OF RESULTS:DT during chemotherapy appears feasible and may improve emotional and dignity-related outcomes. Results should be interpreted cautiously due to the small sample size, attrition, and lack of a control group.
OBJECTIVES: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.
OBJECTIVES:The growing demand for palliative care (PC) services and the need for standardized approaches to patient identification highlight the importance of having validated tools available in Brazilian Portuguese. The absence of culturally adapted instruments may hinder appropriate patient assessment, delay referral to PC services, and ultimately compromise the quality of care delivered. This study aims to translate and adapt the Identification des patients nécessitant des soins PALLiatifs généraux et spécialisés (ID-PALL©) instrument into Brazilian Portuguese. METHODS:Herdman's recommendations were followed, which include conceptual, item, and semantic validation stages. After authorization from the ID-PALL© developers, the translation, synthesis of the translated versions, and back-translation of the instrument were performed. Subsequently, a committee of 11 experts evaluated the semantic, idiomatic, conceptual, and cultural equivalence between the versions, resulting in the development of the pre-final version. To validate the instrument's content, this version was pre-tested (n = 30) with the participation of physicians and nurses. For statistical analyses, the content validity coefficient (CVC) was calculated. RESULTS: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.
OBJECTIVE: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.
OBJECTIVES: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.
OBJECTIVE: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.
OBJECTIVES: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.
