To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain.

Families of children (ages 5–25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children’s hospital. Mothers (n = 55; 87% White) and fathers (n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role.

Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress.

In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers’ strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers’ social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.

Patients with progressive neurologic illness still lack access to quality palliative care services. Barriers to the comprehensive provision of neuropalliative care include gaps in palliative care education. To address this barrier, a novel international model of neuropalliative care education e-learning program was launched in 2022.

This is a qualitative study on the self-reported learning outcomes and educational gains of participants of a neuropalliative care e-learning course.

Thematic analysis shows changes in the participants’ perceptions of neuropalliative care and several specific educational gains. After attending the course, participants recognized neuropalliative care as a multiprofessional and interdisciplinary effort requiring more than medical knowledge and disease-specific treatment skills. They gained understanding of the complexity of prognosis in neurological diseases, as well as ethical concepts as the basis to approach difficult decisions. Valuing the needs of patients and caregivers, as well as honest and open communication were recognized as key components of the caring process. In particular, providing emotional support and building relationships to enhance the spiritual component of care were avidly discussed as essential nonmedical treatment options.

E-learning courses are helping to close the gaps in healthcare professionals’ knowledge and skills about neuropalliative care.

Palliative care (PC) faces a workforce crisis. Seriously ill patients surpass the supply of PC cliniciansin their work clinicians face repeated loss and extreme suffering which can have deleterious consequences, such as burnout and attrition. We urgently need interventions that foster thriving communities in this emotionally complex environment. Storytelling represents a promising path forward. In response to widespread loneliness and moral distress among PC clinicians before, during, and after the early months of the COVID-19 pandemic, we created the Palliative Story Exchange (PSE), a storytelling intervention to build community, decrease isolation, and help clinicians rediscover the shared meaning in their work. This paper discusses this novel intervention and initial program evaluation data demonstrating the PSE’s impact thus far.

Participants voluntarily complete a post-then-pre wellness survey reflecting on their experience.

Thus far, over 1,000 participants have attended a PSE. In the fall of 2022, we began distributing a post-then-pre-evaluation survey. To date, 130 interprofessional participants from practice locations across 10 different countries completed the survey. Responses demonstrate an increase in the connection that participants felt toward their work and the larger palliative care community after attending a PSE. Further, more than half of all free-text responses include terms such as, “meaningful,” “healing,” “powerful,” and “universal,” to describe their participation.

Training programs and healthcare organizations use the humanities to support clinician wellness and improve patient care. The PSE builds upon this work through a novel combination of storytelling, community co-creation using reflection, and shared meaning making. Initial survey data demonstrates that after attending a PSE, participants feel increased meaning in their work, in the significance of their own stories, and connection with the PC community. Moving forward, we seek to expand our community of practice, host a facilitator leadership course, and rigorously study the PSE’s impact on clinician wellness outcomes.

Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context.

Using Beaton’s methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil.

The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant’s interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality.

This validation study will be significant for future DT research from the caregivers’ perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.

Compassionate Cities are a novel approach to health-promotive palliative care that uses a population-based approach to promote health and encourage its citizens to act with confidence to help others during death, dying, or bereavement. This study aimed to provide a critical account of how the leaders of a Compassionate City adopted the initiative and how they experienced its development and implementation.

An interpretative qualitative case study was conducted in a newly established Compassionate City in the UK. Data was collected using in-depth interviews, documentary analysis, and non-participatory observations. Reflective thematic analysis was used to analyze the contents of the multiple resources.

Five observations, 4 document analyses, and 11 interviews with members of the Compassionate City steering committee were conducted. We identified 4 themes: right model, right people, in the right place, at the right time; building a network of organizations and individuals; building sustainable community capacity to deal with grief, loss, and bereavement; and, embedding and sustaining the Compassionate City initiative. The study also found that cross-cutting factors such as leadership, visibility of work, evaluation, communication, and funding influenced and shaped the key themes when developing and implementing the Compassionate City.

This study provides broad insight into the key actions taken by the leaders of a Compassionate City aiming to improve the end-of-life experience of its citizens. We highlight the many challenges and complexities faced by the leaders when translating the concepts of Compassionate Cities into practice and identify key elements to consider for the successful implementation of future initiatives.

Stigma in lung cancer patients may be associated with various negative outcomes such as increased psychosocial symptoms, severity of physical symptoms, and may act as a barrier to medical help-seeking behavior. The Cataldo Lung Cancer Stigma Scale (CLCSS) is one of the most widely used instruments for assessing health-related stigma in lung cancer patients.

To determine the psychometric properties of the CLCSS in a Mexican sample of lung cancer patients.

A non-experimental, instrumental design was employed, using non-probabilistic sampling based on availability. The sample included 265 lung cancer patients. Confirmatory Factor Analysis (CFA) was conducted to assess construct validity, and Cronbach’s alpha and McDonald’s Omega were used for internal consistency and test-retest reliability, respectively, through Pearson correlation coefficient.

The 17-item version yielded a model with 4 factors (stigma and shame, social isolation, discrimination, and smoking) explaining 50.74% of the variance, with adequate values of internal consistency and test-retest reliability.

The Mexican version of the CLCSS is culturally appropriate, brief, psychometrically valid, and reliable for assessing health-related stigma in Mexican lung cancer patients.

Promising studies show that psilocybin-assisted therapy relieves existential distress in patients with serious illnesses, a difficult condition to treat with current treatment options. There is growing interest in this therapy in palliative care. Canada recently amended its laws to allow physicians to request psilocybin for end-of-life distress. However, barriers to access remain. Since implementing psilocybin-assisted therapy within palliative care depends on the attitudes of healthcare providers willing to recommend it, they should be actively engaged in the broader discussion about this treatment option. We aimed (1) to identify issues and concerns regarding the acceptability of this therapy among palliative care professionals and to discuss ways of remedying them and (2) to identify factors that may facilitate access.

A qualitative study design and World Café methodology were adopted to collect data. The event was held on April 24, 2023, with 16 palliative care professionals. The data was analyzed following an inductive approach.

Although participants were interested in psilocybin-assisted therapy, several concerns and needs were identified. Educational and certified training needs, medical legalization of psilocybin, more research, refinement of therapy protocols, reflections on the type of professionals dispensing the therapy, the treatment venue, and eligibility criteria for treatment were discussed.

Palliative care professionals consider psilocybin-assisted therapy a treatment of interest, but it generates several concerns. According to our results, the acceptability of the therapy and the expansion of its access seem interrelated. The development of guidelines will be essential to encourage wider therapy deployment.

Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients’ life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity.

We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55–88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact.

Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact.

Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.

Children with brain cancer and their families have complex care needs throughout diagnosis, active treatment, long-term survivorship, and the palliative phase of illness. This study aimed to explore the perspectives of Australian specialist clinicians on barriers and facilitators to health care for children with brain cancer and their families.

A qualitative approach was taken using semi-structured interviews. Eligible participants were clinicians of any discipline providing care to children with brain cancer and their families in Australia. Interviews were conducted by telephone and asked about perceived strengths and weaknesses in health care and available resources for this population. Qualitative content analysis used a directed approach with inductive refinement.

Eleven clinicians participated, 5 of whom were medical, 3 nursing, and 3 allied health. The overarching theme was that the rarity and diversity of brain tumors in children confers challenges to care that lead to variation in practice. Participants reported having to adapt care from guidelines and patient/family resources designed for adults with brain cancer and children with other cancers, and rely on clinical and research networks. Specialist comprehensive cancer care was generally perceived to offer the best model for accommodating the unique needs of each child/family, but barriers to access were highlighted for children in remote Australia, and long-term follow-up was perceived to be inadequate regardless of where children lived. Significance of results. Until further brain cancer-specific paediatric guidelines become available, our findings highlight the need for communities of practice to share resources and reduce unwarranted variation.

Future research should focus on developing and evaluating guidelines and other resources specific to children with brain cancer, as well as informing suitable models for long-term follow-up care for survivors.

The study used a methodological design to adapt a Turkish translation and validate the Bolton Compassion Strengths Indicators scale.

The sample of the study consisted of 500 nursing students. Partial least squares structural equation modelling was used to analyze the construct and internal validiy. The values of average variance explained were analyzed for convergent validity. Tukey’s test of additivity examined the additivity, and Hotelling’s T2 test examined the mean difference between items. Internal consistency and test–retest reliability were ensured for reliability. Test and retest scores were compared by applying the paired samples t-test and Wilcoxon test, and the fit was analyzed through the intra-class correlation coefficient.

The Turkish version of the scale consisted of 34 items and 8 subscales. The Cronbach’s alpha coefficient of the overall scale was 0.954. The scale was highly reliable and displayed psychometric solid properties.

It has been determined that the Turkish version of the Bolton Compassion Strengths Indicators scale is a comprehensive, easy-to-understand measurement tool with a broad perspective that can be safely applied to future nurse candidate students. The scale has been evaluated as a reliable measurement tool that can provide cross-cultural measurement.

We describe a development and feasibility study of a Sitting Simple Baduanjin program for advanced cancer patients suffering from the fatigue–sleep disturbance symptom cluster. This study was to evaluate the practicality and safety of the Sitting Simple Baduanjin intervention and determine its preliminary efficacy.

This work employed a single-arm mixed-methods approach. The primary outcome measures were feasibility (i.e., recruitment, adherence, and satisfaction) and safety. Validated self-report questionnaires were used to evaluate the preliminary effects of the program, including fatigue, sleep quality, and quality of life at the 4th, 8th, and 12th weeks of the intervention. Qualitative interviews were also conducted after the program.

A total of 30 participants were enrolled, of which 23 (77%) completed the 12-week Sitting Simple Baduanjin program. The mean adherence rate was 88% and no adverse events were reported. Statistically significant improvements were observed in terms of fatigue, sleep quality, and quality of life after program completion. Four themes emerged from the qualitative interview data: (a) acceptability of the Sitting Simple Baduanjin technique, (b) perceived benefits of exercise, (c) barriers, and (d) facilitators.

The findings support the feasibility of the Sitting Simple Baduanjin program for advanced cancer patients and show promise in improving patients’ levels of the fatigue–sleep disturbance symptom cluster and quality of life.

A desire for hastened death is commonly expressed by cancer patients. Although efforts to define and explore this issue have been undertaken, no standardized approach exists to address these desires.

Ms. J expressed a wish for accelerated death and subsequently experienced unexpected clinical decline resulting in a quick, natural death. Our team experienced a mixture of both emotional distress and awe after witnessing the pragmatic approach our patient had to her impending decline, that we felt was worthy of further exploration.

Most clinicians lack formal training in communication, potentially making cases like Ms. J’s highly distressing. Clinicians should feel comfortable addressing and potentially inquiring about patients’ desire to hasten death. While our initial reaction might be to correct this desire, we propose reframing this expression as an opportunity to explore more about our patients.

Recent years have witnessed the rise of patient-reported outcome measures (PROMs) in palliative care (PC), particularly those focused on the standardized measurement of symptom burden. These measures seek to evaluate the quality of PC through the quantification of various aspects of potential suffering (e.g., sleeplessness, loss of appetite, and pain). Further, drawing on patient experience, they provide a framework for evaluating the effectiveness of, and at times expanding, PC services. The aim of this paper is to provide a theoretically informed normative critique of PROMS-PC through a critical engagement with heterogeneous literatures.

A hermeneutic narrative review underpinned by a view of “knowing” as an ongoing social accomplishment and inspired by complexity theory.

This narrative review highlights some limitations to the development of PROMs, including the use of proxies to complete them, and how the outcomes may not always reflect either the character of PC or the key aspects of practice and experience therein.

In their current form, PROMs have the potential to skew understandings of service quality, for example, by privileging one aspect of quality, that is, physical symptoms over other aspects of quality such as communication with care providers.

This umbrella review will summarize palliative and end-of-life care practices in peri-intensive care settings by reviewing systematic reviews in intensive care unit (ICU) settings. Evidence suggests that integrating palliative care into ICU management, initiating conversations about care goals, and providing psychological and emotional support can significantly enhance patient and family outcomes.

The Joanna Briggs Institute (JBI) methodology for umbrella reviews will be followed. The search will be carried out from inception until 30 September 2023 in the following databases: Cochrane Library, SCOPUS, Web of Science, CINAHL Complete, Medline, EMBASE, and PsycINFO. Two reviewers will independently conduct screening, data extraction, and quality assessment, and to resolve conflicts, adding a third reviewer will facilitate the consensus-building process. The quality assessment will be carried out using the JBI Critical Appraisal Checklist. The review findings will be reported per the guidelines outlined in the Preferred Reporting Items for Overviews of Reviews statement.

This umbrella review seeks to inform future research and practice in critical care medicine, helping to ensure that end-of-life care interventions are optimized to meet the needs of critically ill patients and their families.

Patients with advanced cancer present various symptoms as their disease progresses. Among these, fatigue is a frequent symptom in patients with advanced cancer and is associated with decreased quality of life (QOL). However, there are few reports regarding its association with thiamine deficiency (TD).

We report a case in which we found TD in a patient with advanced lung cancer who presented with weight loss, significant fatigue, and appeared to have a worsening general condition, for whom symptoms were dramatically improved within a short period of time by intravenous administration of thiamine.

The patient was a 76-year-old woman who had been diagnosed with lung cancer and liver metastases 6 months earlier. Due to interstitial pneumonia, she was not a candidate for chemotherapy and so palliative care was started. At 8 months after initial diagnosis, the patient complained of fatigue during a medical examination, so a blood sample was taken. A week later, she visited the hospital with a cane. She felt extremely fatigued and was unable to stand, but results from the previous blood test revealed that a TD. The fatigue disappeared 15 minutes after intravenous administration of thiamine and she was able to return home without the cane.

Fatigue is a frequent symptom in advanced cancer patients, and TD may be the underlying cause. Inclusion of TD in the differential diagnosis may contribute to improving patient QOL.

Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being.

This study sought to review existing qualitative literature on family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role.

A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: “Cancer,” “Caregiver,” “End of Life Care,” “Home,” and “Qualitative.” Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research.

Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: “motivations for providing care,” “interactions with health-care professionals,” and “changes during the caring process.”

Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.