Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent–sibling illness-related communication may contribute to siblings’ capacity to cope.

In this study, we aimed to explore parent–sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants’ responses according to illness group (chronic illness vs. LLCs).

We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups.

Two-thirds of siblings expressed satisfaction with their family’s illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness.

Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child’s maturity level, distress, and age.

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.

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.

Clinicians often rely on caregiver proxy symptom reports to treat cancer-related symptoms in children. Research has described disagreement between children’s and caregivers’ symptom reports. Factors influencing the level of agreement is an understudied area. Thus, this study aimed to examine potential factors contributing to the level of agreement between symptom reports provided by children and their caregivers.

Sixteen child–caregiver dyads participated separately in semi-structured interviews after completing a brief symptom measure independently using an electronic device. Child and caregiver quantitative symptom responses were reviewed in real-time and incorporated into the semi-structured interview. Sample characteristics and the level of agreement between symptom reports were calculated using descriptive statistics. Transcribed participant interviews were analyzed using content analysis.

Nearly half of child–caregiver dyads exhibited a moderate (37.5%, n = 6) or low (18.75%, n = 3) level of agreement on the abbreviated symptom measure. Qualitative analysis identified 5 themes: recognizing symptoms, experiencing symptoms, communicating symptoms, re-assessing and treating symptoms, and influencing individual and relationship factors. Influencing individual, including a child’s tendencies or personality traits, and relationship factors intersected the other themes, partially explained their symptom perceptions, and served to facilitate or hinder symptom communication.

Symptom communication is an important part of the symptom cycle, comprised of symptom recognition, experience, and management. Individual and relational factors may influence discrepancies in symptom perceptions between the child and caregiver. Clinicians and researchers should consider developing interventions to enhance symptom communication and promote collaboration between children and their caregivers to address symptom suffering during cancer treatment.

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.

Current recommendations do not separate adult and pediatric palliative care (PC) in terms of the personnel needed, or the distribution of care between community and hospital-based services. We evaluated the differences in the utilization of pediatric and adult hospital PC services for non-oncological patients.

Retrospective study. Parameters included demographics, underlying diagnoses, number of consultations per patient, duration of PC involvement, and follow-up. All non-oncology patients seen by the adult or pediatric PC teams between June 2021 and July 2023 at a single tertiary hospital.

A total of 445 adults and 48 children were seen by the adult and pediatric palliative teams, respectively. Adults were primarily seen in the terminal stages of common chronic diseases, with a high mortality rate. Children were mainly seen at a very young age with rare and complicated diseases. Children needed longer duration of follow-up (114 vs. 5 days, p < 0.001), more consultations (8.5 vs. 4, p < 0.001), and died less while hospitalized (25% of patients vs. 61.6%, p < 0.001).

Adult patients had relatively common diseases, seen and treated often by primary care practitioners, whereas children had rare life-limiting diseases, which primary care pediatricians may have limited experience with, and which require involvement of multiple specialized hospital-based services. Future healthcare PC planning should consider these factors in planning the primary setting for PC teams, specifically more training of adult general practitioners in PC skills, and earlier referral of pediatric patients to hospital-based PC.

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.

The aim was to gain a deeper understanding of the meaning of reconciliation as a concept in palliative care. Terminal illnesses affect almost all aspects of life and being close to death may lead to a need for reconciliation. The end of life is stressful on an existential level for both patients and relatives. It can therefore be of relevance for palliative care nurses to understand the meaning of reconciliation.

This study used a design for a literature study in accordance with a hybrid model. A deductive qualitative content analysis of autobiographies about being seriously ill and in a palliative stage in life was used to test the meaning of reconciliation. Ethical aspects concerning the use of autobiographies and the ethical principles of the Helsinki Declaration were considered. The theoretical perspective was the caritative theory of caring.

The result showed that for patients in palliative care, reconciliation can be described as a strive for acceptance, to live in a truthful way, to forgive and be forgiven. People wish to create meaning in their existence and reconcile as a whole in body, spirit, and soul. By striving to unite suffering, life, and death as well as a peaceful relationship with relatives, people can achieve reconciliation at the end of life. Reconciliation is something ongoing and can be a force in what has been, what is, and what will be.

We conclude that reconciliation is a concept of importance when caring for patients in end-of-life care. However, reconciliation can be expressed in different ways without necessarily using the concept itself. A broader and deeper understanding of the concept facilitates conversations about the meaning of reconciliation in palliative care and can enable patients who strive to achieve reconciliation to be more easily identified and supported.

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.

Inadequate access to cancer care, high mortality, and out-of-pocket expenditure contribute to health-related suffering in low- and middle-income countries, making palliative care a relevant option. How palliative care development has alleviated suffering is not systematically studied, necessitating this review’s conduct. The objective of this systematic review with a framework synthesis approach is to identify and map the dimensions and indicators of cancer palliative care development and the components of integration between cancer and palliative care in LMICs.

Uni- and multi-disciplinary databases like Cochrane, MEDLINE (PubMed), EMBASE, CINAHL Complete, and PsycINFO will be systematically searched for eligible studies exploring cancer palliative care development in LMICs and their contribution to alleviating health-related suffering in the cancer context. Our selection process will encompass countries classified by the World Bank as low-income (26 countries), lower-income (54 countries), and upper-middle-income (54 countries).

Review findings will be synthesised and analysed using a best-fit framework synthesis method using 2 frameworks (the WHO model of components and indicators for palliative care development and integration elements between oncology and palliative care), and the findings will be developed as themes and subthemes, and patterns interpreted using these 2 models.

This review will analyse the development of cancer palliative care in LMICs. It will identify gaps in provision, solutions derived at the regional level to address them, and best practices and failed models with reasons underpinning them.

Cancer is an enormous public health burden among Black and Latinx cancer survivors, and they are at risk of facing barriers to accessing cancer treatment and support in the United States. This study explored the unique challenges and experiences faced by Black and Latinx cancer survivors through the lens of their caregivers, including the specific cultural, social, and systemic factors that influence cancer survivorship experience and quality of life within these communities in the United States.

We used a qualitative descriptive design for the study, and conducted 6 focus group discussions (3 Latinx and 3 Black groups) with a total of 33 caregivers of cancer survivors, (Mean age = 63 years). Data were analyzed using inductive content analysis.

We identified 3 main themes: (1) families as (un)stressors in survivorship such as the vitality of social connections and families as unintended burden; (2) responses after diagnosis specifically whether to conceal or accept a diagnosis, and (3) experiencing health care barriers including communication gaps, biased prioritizing of care, and issues of power, trust, and need for stewardship.

The findings align with previous research, highlighting the complex interplay between cultural, familial, and healthcare factors in cancer survivorship experiences within underserved communities. The study reiterates the need for culturally tailored emotional, physical, financial, and informational support for survivors and their caregivers. Also, to improve quality of life, the study highlights a need to strengthen mental health and coping strategies, to help address psychological distress and improve resilience among survivors and their caregivers.

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.

Compassion is essential in palliative care; however, there is a lack of evidence of the association between this construct and patients’ dignity-related distress. The present study aimed to investigate the association between end-of-life cancer patients’ sense of dignity, the level of compassion of the healthcare professionals (HCPs) noticed and perceived by the patients, and levels of compassion that HCPs felt they had toward patients, investigating through specific attitudes and behaviors. Furthermore, the relationship between compassion and patients’ physical and psychological symptoms, such as levels of anxiety and depression, was also investigated.

The study was cross-sectional. The sample consisted of 105 end-of-life cancer patients and 40 HCPs. Patients had a Karnofsky Performance Status of 50 or lower and a life expectancy of less than 4 months. For each patient, sociodemographic data were collected, and a set of rating scales assessing compassion, dignity as well as physical and psychological symptoms were administered.

The results showed significant negative associations between patients’ perception of compassion and dignity-related distress as well as significant negative associations between patients’ perception of compassion and patients’ symptoms.

Compassion seems to be involved in diminishing dignity-related distress and alleviating physical and psychological symptoms. Other studies are needed to understand whether patients’ symptoms or whether specific HCPs’ conditions influence compassion. Exploring compassion and at the end-of-life could encourage a dignity-conserving care.