Psychological distress is common among palliative care patients. Despite this, little is known about the availability of psychological services to support palliative care patients within Australia. This study aimed to determine the level of psychological support services available within Australian Palliative Care Services. The study was based on a similar study in Australia by Crawford in 1999, allowing differences over time to be examined.

A 12-item online survey was distributed to adult Palliative Care Services throughout Australia from November 2021 to January 2022. Quantitative and qualitative analysis of responses was conducted, with comparisons made with the 1999 study using a 2-proportions z-test.

Social workers were the most available professionals delivering psychological care (prevalence of 94.1%), followed by spiritual care workers (62.5%), creative therapists (43.8%), counselors (36.4%), psychiatrists (31.3%), complementary therapists (28.1%), and psychologists (25.0%). Nearly 60% of services had no access to a psychiatrist or a psychologist. The proportion of Palliative Care Services that had access to a psychiatrist, psychologist, or counselor was significantly less in 2021/22 compared to 1999, with differences of 29.4% (p = 0.002), 23.4% (p = 0.015), and 26.1% (p = 0.006), respectively.

Lack of access to psychiatrists, psychologists, and counselors in Australian Palliative Care Services remains a significant issue and has become more prevalent since 1999. Ongoing advocacy and increased government funding to enable psychological health professionals to be readily employed in Palliative Care Services is vital.

The objective of this study was to compare the attitudes and beliefs of PCU physicians leaders in the United States versus Canada regarding the subcutaneous method in the administration of medications and hydration in order to gain a better understanding as to why variations in practice exist.

This survey trial took place from November 2022 to May 2023. The MD Anderson Cancer Center institutional review board in Houston, Texas, approved this study. The participants were the physician leaders of the acute palliative care units (PCUs) in the United States and Canada. The survey comprised questions formulated by the study investigators regarding the perceived comfort, efficiency, and preference of using the subcutaneous versus the intravenous method. The consent form and survey links were emailed to the participants.

Sixteen PCUs were identified in the United States and 15 PCUs in Canada. Nine US and 8 Canadian physicians completed the survey. Physicians in Canada were more likely to use the subcutaneous route for administering opioids, antiemetics, neuroleptics, and hydration. They preferred subcutaneous over intravenous or intramuscular routes (p = 0.017). Canadian physicians felt their nursing staff was more comfortable with subcutaneous administration (p = 0.022) and that it was easier to administer (p = 0.02). US physicians felt the intravenous route was more efficient (p = 0.013).

The study results suggest that exposure to the subcutaneous route influences a physician’s perception. Further research is needed to explore ways to incorporate its use to a greater degree in the US healthcare system.

The Necesidades Paliativas CCOMS-ICO© (NECPAL) screening tool was developed to identify patients in need of palliative care and has been used in Israel without formal translation, reliability testing, or validation. Because cultural norms significantly affect subscales such as social vulnerability and health-care delivery, research is needed to comprehensively assess the NECPAL’s components, adapt it, and validate it for an Israeli health-care setting. This study linguistically and culturally translated the NECPAL into Hebrew to examine cultural and contextual acceptability for use in the Israeli geriatric health sector. The newly adapted tool was measured for itemized and scale-level content validity, inter-rater reliability (IRR), and construct validity.

The NECPAL was back-translated and its content validated by a 5-member expert panel for clarity and relevance, forming the Israeli-NECPAL (I-NECPAL). Six health-care professionals used the I-NECPAL with 25 post-acute geriatric patients to measure IRR. For construct validity, the known-groups method was used, as there is no “gold standard” method for identifying palliative needs for comparison with the NECPAL. The known groups were 2 fictitious cases, predetermined of palliative need. Thirty health-care professionals, blinded to the predetermined palliative status, used the I-NECPAL to determine whether a patient needs a palliative-centered plan of care.

The findings point to acceptable content and construct validity as well as IRR of the I-NECPAL for potential inclusion as a tool for identifying geriatric patients in need of palliative care. Content-validity assessment brought linguistic changes and the exclusion of the frailty parameter from the annex of chronic diseases. The kappa-adjusted scale-level content-validity index indicated a high level of content validity (0.96). IRR indicated a high level of agreement (all parameters with an “excellent–good” agreement level). The sensitivity (0.93), specificity (0.17), positive predictive value (0.53), and negative predictive value (0.71) revealed how heavily the scale weighed upon the surprise question. These metrics are improved when removing the surprise question from the instrument.

Similar to other countries, the Israeli health-care system is regulated by policies that portray the local beliefs and culture as well as evidence-based practice. The decision about when to switch a patient to a palliative-centered plan of care is one such example. It is thus of utmost importance that only locally adapted and vigorously tested screening tools be offered to health-care providers to assist in this decision. The I-NECPAL is the first psychometrically tested palliative needs identification tool for use in the geriatric population in Israel, on both a scale and an itemized level. The results indicate that it can immediately replace the current unvalidated version in use. Further research is needed to determine whether all parts of the scale are relevant for this patient population.

To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients’ documented preferences.

We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences.

Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient’s refusal to engage in ACP conversations and family experiencing difficulty in accepting patient’s poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients’ care) as barriers to providing care consistent with preferences.

Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.

Adult daughters concerned about getting breast cancer throughout their lives and required support because their mothers had breast cancer.

This article aims to examine the revised Information and Support Needs Questionnaire (ISNQ) and validate it in a Taiwanese community population comprising daughters of mothers with breast cancer.

Using convenience sampling, daughters of mothers with breast cancer were recruited and were separated into 2 samples (Sample 1, n = 102, and Sample 2, n = 118). First, we translated and modified the ISNQ to ensure cultural adaptation and formed ISNQ Chinese version (ISNQ-C). Second, we conducted an exploratory factor analysis using both samples to explore the ISNQ-C factor structure. Finally, we tested the criterion validity and known‐group validity of the ISNQ-C using Sample 2.

Thirty-two items addressing 5 factors were identified for the ISNQ‐C. Each factor had good internal consistency. The criterion validity was supported by significant correlations between the ISNQ‐C scores and scores on the impacts of an event, anxiety, and depression. Known‐group comparisons revealed that the group with deceased mothers reported significantly more unmet needs related to “releasing my anxiety” compared to the group where the mother was stable and undergoing regular follow-ups.

The ISNQ‐C demonstrated good reliability and validity in terms of assessing needs among daughters of mothers with breast cancer in Taiwan. Using this assessment tool before genetic counseling to target the individual needs of this population at risk for breast cancer would be helpful to provide personalized care.

The present study was conducted to examine the relationship between nursing students’ compassion competencies and their perceptions of spirituality and spiritual care.

The population of the study consisted of nursing students over the age of 18 years who were educated at the nursing faculty of a state university in Turkey between May and June 2022. The study was completed with 263 student nurses. The “Sociodemographic Characteristics Form,” “Compassion Competency Scale,” and “Spirituality and Spiritual Care Rating Scale” were used to collect the data. Frequencies, percentages, mean values, standard deviations, and Pearson Correlation Analysis were used to evaluate the data.

The nursing students were found to have a high level of compassion competency (4.04 ± 0.57). It was also found that the students had moderate (54.76 ± 5.35) perceptions of spirituality and spiritual care. On the other hand, there was a moderate and positive relationship between the total mean scores of “Compassion Competency” and “Perceptions of Spirituality and Spiritual Care” (p > 0.05).

It was concluded that as nursing students’ compassion competencies increased, their perceptions of spirituality and spiritual care also increased.

This study aimed to validate the Japanese versions of the Trust in Oncologist Scale (TiOS-J) and the TiOS-Short Form (TiOS-SF-J).

A cross-sectional web-based survey was conducted among cancer patients in Japan. The forward-backward translation method was used to develop the TiOS-J. The web-based survey was mailed to 633 people, of whom 309 responded. After 2 weeks, 103 among the 156 first-time respondents completed the second survey to verify the reliability of the retest method. The validity was evaluated by exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Spearman’s correlation coefficients between the Patient Satisfaction Questionnaire-Japanese, willingness to recommend the oncologist, trust in health care, and number of oncological consultations. To evaluate reliability, Cronbach’s α and test–retest correlation were calculated.

The theoretically driven four-factor model and the EFA-driven one-factor model of the full-form TiOS-J (18 items) did not result in an acceptable fit; however, CFA supported the one-dimensionality of the 5 items from the TiOS-SF-J (χ2 (5) = 12.36, p = 0.03, goodness-of-fit index = 0.984, adjusted goodness-of-fit index = 0.952, comparative fit index = 0.991, and root mean square error of approximation = 0.069). With regard to the reliability of TiOS-J and TiOS-SF-J, the Cronbach’s alpha values were 0.94 and 0.89, respectively; the test–retest values were 0.82 and 0.78.

This study indicated that the TiOS-J and TiOS-SF-J are valid and reliable instruments for measuring patients’ trust in their oncologists and can be used to assess trust in oncologists for both clinical and research purposes.

This study aims to explore seriously ill patients’ experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan.

This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs.

Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity.

Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs’ key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training.

We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis.

We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists.

Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.

Although psychological distress in palliative patients has at least an equal or greater impact on the quality of life compared to physical or spiritual distress, there is limited research on contextual factors associated with psychosocial intervention accessibility and relevance. This is the first published study to explore patients’ views on psychosocial intervention delivery medium preferences, key biopsychosocial target domains, and well-being priorities during the palliative and end-of-life (EOL) phases.

Eighty-one palliative patients from a Specialist Palliative Care Service completed a questionnaire, which collected quantitative and qualitative data on preferred mediums for receiving psychosocial interventions, priority biopsychosocial target domains, and well-being priorities during the palliative and EOL phases.

Results showed that an individual in-person was the most preferred medium for receiving psychosocial interventions. Improving quality of life, distressing emotions, and adjusting to the palliative care context were the 3 most frequently endorsed biopsychosocial target domains. Valued living and comfortable living were the key priority well-being themes for the palliative phase, whereas being surrounded by loved ones and comfortable and dignified dying were the priority well-being themes for the EOL phase.

Findings highlight psychosocial interventions as an essential part of a holistic approach to patient-centered care throughout both the palliative and the EOL phases. Results can inform the refinement of existing and the development of new psychosocial interventions, particularly those that target emotional distress, adjustment, and quality of life. Furthermore, in-person treatment delivery remains essential in an evolving digital world.

Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, “narstaende.se,” from the perspective of spouses of patients receiving specialized home care.

A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend “narstaende.se” to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website’s potential to provide support and increase preparedness for family caregivers in general.

This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping.

Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019–2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping.

The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001).

Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver’s health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.

To describe nurses’ experiences of caring for individuals who have attempted suicide in specialized palliative care and to describe if the care of these individuals changed after the suicide attempt.

A qualitative, descriptive study was conducted. Nine nurses working in specialized palliative care units were interviewed following a semi-structured interview guide. Conventional content analysis was used in the analysis process.

The results are presented in 3 categories: “A suicide attempt evokes strong emotions,” “Health-care efforts changed after the suicide attempt,” and “Experiences for the rest of working life.” Suicide attempts aroused emotions in nurses such as frustration, compassion, and feelings of being manipulated. The relationship between the nurse and the individual was strengthened after the suicide attempt, and their conversations became deeper and changed in nature. Health-care efforts relating to the individual increased after the suicide attempt.

The results of the study can create an awareness that the palliative process also includes the risk of suicide and can be used to create conditions for nurses to be able to handle questions about suicide without fear. The results of the study can be used as an “eye opener” to the fact that suicidality occurs in palliative care. In summary, there is a critical need for nursing education in suicide risk assessment and continued follow-up care for patients at risk of suicide within palliative care.

This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians.

This Belgian nationwide qualitative study follows a grounded theory approach. We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven, and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ).

Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient’s demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians’ inner conviction about the need of PS-ES.

Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.

Adherence plays a vital role in the effectiveness of non-pharmacological interventions. The disappearance of interventions’ effects at follow-up was caused by inadequate self-practice beyond intervention period. The purpose of this study is to examine the factors associated with adherence to aerobic exercise and Tai Chi and the impact of adherence on the short- and long-term effectiveness in improving sleep in patients with advanced lung cancer.

This study analyzed data collected in a clinical trial that evaluated the effects of aerobic exercise and Tai Chi in patients with advanced lung cancer. Two types of exercises were maintained at the same intensity but with different dosage. A total of 99 patients with advanced lung cancer who were recruited between 2018 and 2020 were included. Data were collected using self-report questionnaires.

Fifty participants were randomly assigned to aerobic exercise and 49 to Tai Chi intervention. Higher levels of satisfaction and lower levels of depression were significantly associated with higher attendance and compliance in both groups. Low fatigue levels contributed to higher attendance in Tai Chi. Both attendance and compliance were significantly associated with long-term sleep improvement.

Higher levels of satisfaction and lower levels of depression were important characteristics of attendance and compliance with home-based practice in both groups, whereas lower levels of fatigue uniquely contributed to higher attendance in Tai Chi. Better exercise adherence improves long-term effectiveness of sleep in patients with advanced lung cancer. Adopting strategies is imperative to promote exercise adherence in patients with greater levels of depression and fatigue.

Emphasizing the pivotal role of caregivers in the cancer care continuum, a program designed to educate caregivers of cancer patients undergoing chemotherapy underscores their significance. The palliative care education initiative strives to cultivate a compassionate and effective care environment, benefiting both patients and caregivers. By imparting education, fostering positive attitudes, offering support, encouraging appropriate behaviors, and providing essential resources, the program aims to enhance the overall caregiving experience and contribute to the well-being of those navigating the challenges of cancer treatment.

To evaluate the effectiveness of a palliative care education program for caregivers of cancer patients receiving chemotherapy.

The research employed a purposive sample comprising 155 caregivers who were actively present with their cancer patients throughout the pre- and post-test phases within a quasi-experimental research design. The study took place at the outpatient oncology center of Al-Shifa Medical Complex in Port Said City, Egypt. To gather comprehensive data, 4 instruments were utilized: a demographic questionnaire, a nurse knowledge questionnaire, a scale measuring attitudes toward palliative care, and an assessment of reported practices in palliative care. This methodological approach allowed for a thorough exploration of caregiver perspectives, knowledge, attitudes, and practices within the context of a palliative care education program.

Before the palliative care education program, only 1.3% of caregivers had a good overall level of knowledge about cancer and palliative care; this increased to 40.6% after the program. Similarly, before the palliative care education program, 32.9% of caregivers had a positive overall attitude, which increased to 72.3% after the program. Similarly, 27.1% of caregivers had an overall appropriate palliative care practice during the pre-test phase, which increased to 93.5% after the palliative care education program.

The palliative care education program significantly improved caregivers’ knowledge, attitudes, and practice scores. It is strongly recommended that caregivers of cancer patients receive continuing education in palliative care. In addition, it is crucial to conduct further research with a larger sample size in different situations in Egypt.

To provide appropriate palliative care, nurses should have appropriate level of self-efficacy in palliative care, but the levels among nurses were low. To improve the levels effectively, self-efficacy in palliative care should be assessed using reliable and valid instruments. The purpose of this study was to examine the reliability and validity of the Self-Efficacy in Palliative Care Scale in Korean nurses.

In this cross-sectional, observational study, 272 nurses (mean age: 30 years) were enrolled from 6 university-affiliated medical centers or community hospitals in South Korea. Data on self-efficacy and demographic characteristics were collected. Validity was assessed by exploratory and confirmatory factor analyses (SPSS and Mplus). Reliability and homogeneity were assessed by Cronbach’s alpha and item analyses (SPSS), respectively.

The exploratory and confirmatory factor analyses supported the 4-factor structure (communication, assessment and symptom management, psychosocial and spiritual management of patient and family, and multiprofessional teamworking) with factor loadings >.60 and with good model fit: root mean square error of approximation =.07, Tucker–Lewis index =.94, comparative fit index =.95, and standardized root mean square residual =.04. Cronbach’s alphas for the total scale and each of the subscales ranged from .883 to .965. The corrected item–total correlation coefficients of all items ranged from .61 to .90.

The findings of this study supported the reliability and validity of this instrument among Korean nurses. This instrument can be used to assess nurses’ self-efficacy in palliative care and to test intervention effects on it.

Cervical cancer affects survivors’ overall coping. Yet, specifically emotional and behavioral expression patterns among cervical cancer survivors have barely been examined. In addition, no study has focused on survivors’ experiences of sequences related to coping. Understanding these perceptions can help provide a tailored response and improve psycho-social interventions. The aim of this study was to gain a better understanding of the emotional and behavioral motives involved in coping with cervical cancer recovery.

Qualitative interviews were conducted with 15 survivors of cervical cancer (stages I and II), using a semi-structured in-depth questionnaire. The interviews were recorded, transcribed, and analyzed by three researchers using thematic analysis.

Six main themes emerged: (i) Reasons and benefits for keeping the disease a secret or sharing it with others; (ii) “When you get used to despair, there's also room for hope”: Despair alongside hope; (iii) Self-guilt following the disease, but also knowing how to forgive yourself; (iv) Deep loneliness alongside a significant need for support; (v) Finding the way from passivity to activity; and (vi) When meaning in life is missing, and the importance of meaning when it is present. There was a balance between negative emotions and behaviors (despair, confidentiality, guilt, loneliness, passivity, lack of meaning) and positive emotions and behaviors (hope, openness, forgiveness, significant support, activity, meaning).

The study revealed that in some cases cervical cancer coping during the recovery period moves across sequences. The women's narratives portray past difficulties as the reason for present psychological health, and their experience of a healthy present is intensified by their past difficulties. Implications for practice are discussed.

Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1–3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis.

This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke’s guidelines.

Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals.

We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients’ identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.

In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child’s emotional status using the same scale.

The average child’s emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children’s emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children’s emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).

Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.