Prolonged grief is a chronic and debilitating condition that affects millions of persons worldwide. The aim of this study was to use a qualitative approach to better understand how relatives with prolonged grief disorder perceive what does or not help them and whether they were able to make recommendations.

Participants were all relatives of deceased patients admitted to 26 palliative care units involved in the FamiLife study; relatives were included if diagnosed with prolonged grief symptoms (i.e., Inventory Complicated Grief (ICG) questionnaire with a cut-off >25), and volunteered to participate. Semi-directed telephone interviews were conducted by psychologists between 6 and 12 months after the patient’s death. The interviews were open-ended, without a pre-established grid, then transcribed and analyzed using a thematic approach.

Overall, 199/608 (32.7%) relatives were diagnosed with prolonged grief symptoms, i.e., with an ICG score >25, and 39/199 (20%) agreed to be interviewed. The analysis yielded 4 themes: (1) the experience of mourning: intense sadness and guilt (reported by 35/39 participants, 90%); (2) aggravating factors (38/39, 97%): feeling unprepared for death and loneliness, presence of interpersonal barriers to adjustment, external elements hindering the mourning progress; (3) facilitating factors (39/39, 100%): having inner strength or forcing oneself to get better, availability of social and emotional support; and (4) the suggestions grieving relatives had to alleviate the grief burden (36/39, 92%). The analysis enabled to identify 5 suggestions for relieving the grief burden: improving communication, developing education about death and grief, maintaining contact, offering psychological support, and choosing the right time for the palliative care team to contact the relatives.

This study revealed how bereaved relatives experienced the help provided by the healthcare teams, their representations, and what could be improved. These findings could be used to design intervention studies.

This case highlights the limitations of current prognostication and communication in clinical practice.

We report a case of a 50 year old patient with metastatic melanoma following admission to intensive care unit and later transferred to palliative care unit for end-of-life care.

The patient had clinical improvement despite signs of predictors of death and was later transferred back to care of oncology team.

Physicians frequently overestimate or underestimate survival time which can be distressing to patients and families. There is need for further research to improve the accuracy of these tools for the sake of our patients and their families.

Coping styles can be improved by dyadic palliative care interventions and may alleviate patients’ and family caregivers’ distress. Moreover, family caregivers’ preloss resilience protects against depression after bereavement. This study aimed to determine the types of coping styles can be encouraged to increase resilience.

A self-reported questionnaire survey was administered to family caregivers at the 4 palliative care units, and their resilience was assessed using the Connor–Davidson Resilience Scale (CD-RISC) and their coping styles were assessed using the Brief Coping Orientation to Problem Experienced, as well as their background characteristics.

Among 291 caregivers with a mean CD-RISC score of 56.2 (standard deviation: 16.13), internal locus of control, educational level, and history of psychotropic drug use were associated with resilience. After adjusting for the aforementioned factors, more frequent use of positive coping styles such as active coping (Spearman’s ρ = 0.29), acceptance (ρ = 0.29), positive reframing (ρ = 0.29), planning (ρ = 0.24), and humor (ρ = 0.18), was found to be associated with higher resilience. On the contrary, more frequent use of negative coping styles such as behavioral disengagement (ρ = −0.38), self-blame (ρ = −0.27), and denial (ρ = −0.14) was found to be associated with less resilience.

By assessing internal locus of control, educational level, and history of psychotropic medication use of family caregivers, as factors associated with their respective resilience, may help identify less resilient family caregivers who are at risk for developing major depression after bereavement. In addition, coping skill-based educational interventions targeting patients and their family caregivers that focus on specific coping styles associated with resilience may increase family caregivers’ resilience, resulting in less emotional distress and a lower risk of major depression after bereavement.

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.

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.

Compassion is acknowledged as a key component of high-quality palliative care, producing positive outcomes for both patients and healthcare providers. The development of the Sinclair Compassion Questionnaire (SCQ) fulfilled the need for a valid and reliable tool to measure patients’ experience of compassion. To validate the Italian version of the SCQ and to evaluate its psychometric properties in a sample of cancer patients with a life expectancy of less than 4 months.

Cronbach’s alpha estimates were computed to evaluate the internal reliability. Exploratory Factor Analysis, Confirmatory Factor Analysis, and Item Response Theory analyses were performed to assess the validity of the construct. Divergent validity was assessed using the Functional Assessment of Chronic Illness Therapy-Treatment Satisfaction-Patient Satisfaction, the revised Edmonton Symptom Assessment Scale, and the Trust in Oncologist Scale-Short Form. Data were collected from 131 patients recruited in either a hospital or a hospice setting.

The analyses confirmed the single factor structure of SCQit, with Confirmatory Factor Analysis factor loadings ranging between 0.81 and 0.92 and satisfactory internal reliability. Hospital setting and high diagnosis/prognosis awareness were associated with significantly lower SCQit scores, whereas practicing a religious faith was associated with greater experiences of compassion.

The Italian version of the SCQ (SCit) is a valid and reliable measure of patient-reported compassion. The SCQit can be used in clinical practice and research to measure the compassion experiences of terminally ill cancer patients and to evaluate the effectiveness of training to promote compassionate care in healthcare professionals.

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.

Coping with a patient’s death is one of the most challenging events faced by healthcare professionals in clinical practice. A broad understanding of the coping strategies used by healthcare professionals is fundamental to the development of effective interventions and the provision of good bereavement care. This review aims to systematically synthesize the coping experience of healthcare professionals in the course of their work when they are confronted with patient deaths.

PubMed, Embase, ScienceDirect, CINAHL, PsycINFO, Web of Science, Cochrane Library, Scopus, and Wiley online library were searched in April 2023 with no restriction on publication date. A 3-stage thematic synthesis method was applied for data integration and analysis.

Thirty studies involving 545 participants met the inclusion criteria and scored a high level on quality assessment ranging from 9.0 to 10.0. Six themes were identified: emotional coping, cognitive coping, behavioral coping, relational coping, spiritual coping, and occupational coping.

Overall, the coping strategies used by healthcare professionals in response to bereavement were found to be unique and multidimensional. Understanding how healthcare practitioners use emotional, cognitive, behavioral, relational, spiritual, and professional strategies to cope with bereavement will prove extremely beneficial in helping them to manage their grief, and can furthermore promote their professional growth and ensure the provision of excellent bereavement care for patients.

To identify the prevalence of depression, anxiety, and psychosocial distress among Ugandan palliative care providers during the COVID-19 pandemic, measure providers’ perceived levels of social support, and identify factors affecting a provider’s likelihood of being depressed, anxious, distressed, or perceiving various levels of social support.

Data was collected from 123 palliative care providers using an online survey. Depression, anxiety, and psychological distress were measured using the Patient Health Questionnaire-9, the Generalized Anxiety Disorder-7, and the Self-Reporting Questionnaire, respectively. Information on perceived level of social support was gathered through the Multidimensional Scale of Perceived Social Support. The survey also asked about mental health resources available to providers at their place of work and what resources are still needed.

Participants ranged in age, gender, religion, marital status, clinical position, and years of experience in palliative care. Results indicate that 20% of respondents show signs of moderate to severe depression, 14% show signs of moderate to severe anxiety, and 33% show signs of psychological distress. Additionally, 50% of respondents reported a low total level of social support. Depression, anxiety, and psychological distress scores were all negatively correlated with perceived social support scores. Over 50% expressed a desire for additional mental health resources at their place of work.

In 2021–2022, the severity of depression, anxiety, and psychological distress varied among palliative care providers in Uganda, with some experiencing moderate to severe mental health effects. Higher degrees of depression, anxiety, and psychological distress were correlated with lower levels of perceived social support, highlighting the importance of social support during times of crisis. The results highlight a desire for improved access to mental health resources and will help providers and organizations provide better support and better prepare for future crises.

Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death.

A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013–December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults.

This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence.

The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

In 2022, assisted suicide (AS) was legalized in Austria. We aimed to investigate the experiences and attitudes of palliative care (PC) and hospice nurses toward AS in Austria after the first year of implementation of the new law.

A cross-sectional survey was distributed online to nurses in every known specialized and general hospice and PC units in Austria (n = 255 units). The questionnaire included sociodemographic characteristics, the Assisted Suicide Attitude Scale, the Comfort Discussing Assisted Suicide Scale, and questions on recent experiences with AS requests. We used Spearman’s correlation coefficient for determining associations between sociodemographic characteristics and attitudes toward AS, as well as comfort discussing AS. For comparison of frequencies, we applied ꭓ2 tests. We computed a linear regression model to examine predictors for attitudes toward AS.

The total sample were N = 280 nurses. More than half (61.2%) indicated that they had cared for a patient who expressed a wish for AS within the first year of implementation. Though responses varied widely, more nurses expressed support for AS than those were opposed (50.36% and 31.75%, respectively). Factors that statistically contributed to more reluctance toward AS in the regression model were older age, religiousness, and experience of working with patients expressing a wish for AS.

This work provides valuable insight into nurses’ perceptions toward the legislation of AS in the first year since the new law was passed. The results can inform the future development of the AS system and support for nurses in end-of-life care, and critically contribute to international discussions on this controversial topic.

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.

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.