The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death.

This qualitative study obtained interview data from N = 44 5–18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology.

Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country.

This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.

Inflammation may contribute to the high prevalence of depressive symptoms seen in lung cancer. “Sickness behavior” is a cluster of symptoms induced by inflammation that are similar but distinct from depressive symptoms. The Sickness Behavior Inventory-Revised (SBI-R) was developed to measure sickness behavior. We hypothesized that the SBI-R would demonstrate adequate psychometric properties in association with inflammation.

Participants with stage IV lung cancer (n = 92) were evaluated for sickness behavior using the SBI-R. Concomitant assessments were made of depression (Patient Hospital Questionniare-9, Hospital Anxiety and Depression Scale) and inflammation [C-reactive protein (CRP)]. Classical test theory (CTT) was applied and multivariate models were created to explain SBI-R associations with depression and inflammation. Factor Analysis was also used to identify the underlying factor structure of the hypothesized construct of sickness behavior. A longitudinal analysis was conducted for a subset of participants.

The sample mean for the 12-item SBI-R was 8.3 (6.7) with a range from 0 to 33. The SBI-R demonstrated adequate internal consistency with a Cronbach's coefficient of 0.85, which did not increase by more than 0.01 with any single-item removal. This analysis examined factor loadings onto a single factor extracted using the principle components method. Eleven items had factor loadings that exceeded 0.40. SBI-R total scores were significantly correlated with depressive symptoms (r = 0.78, p < 0.001) and CRP (r = 0.47, p < 0.001). Multivariate analyses revealed that inflammation and depressive symptoms explained 67% of SBI-R variance.

The SBI-R demonstrated adequate reliability and construct validity in this patient population with metastatic lung cancer. The observed findings suggest that the SBI-R can meaningfully capture the presence of sickness behavior and may facilitate a greater understanding of inflammatory depression.

The aim of this methodological study was to test the validity and reliability of the Turkish version of the Family Inventory of Needs.

The universe of the study consisted of 300 family members of inpatients hospitalized in the palliative care units of four hospitals in northern Turkey between April 12, 2019 and December 30, 2019. The translation process was performed in multiple stages using the forward–backward translation model. The reliability of the Family Inventory of Needs was evaluated using the Cronbach α reliability coefficient and item-total score correlations. Exploratory factor analyses were applied to examine the factor structure of the scale and its construct validity. To test the time invariance of the scale, the relationships between the scores obtained from the first and second applications were examined using the intraclass correlation coefficient (ICC).

The Kaiser–Meyer–Olkin value of the Family Inventory of Needs was found to be 0.893. The items of the Family Inventory of Needs were found to explain 45.23% of the total variance in scores. The Turkish form of the scale consisted of the importance and fulfillment subdimensions, and had 19 items. The ICCs of the test–retest scores of the importance and fulfillment subdimensions of the Family Inventory of Needs were found to be, respectively, ICC = 1.000 and ICC = 0.730 with a positive, linear, and highly significant relationship between the scores. The item-total score correlation coefficients of the scale were found to vary between 0.920 and 0.908 in the importance subdimension, and between 0.930 and 0.922 in the fulfillment subdimension.

The Turkish version of the Family Inventory of Needs was found to be a valid and reliable measurement tool that can be safely used with the family members of Turkish inpatients.

When cognitive impairment precludes patients' report of symptoms, it becomes necessary to use other means. The purpose of our study was to evaluate the validity of the method currently in use on our service.

Two members of the team simultaneously assessed the patient and independently recorded whether the patient showed signs of discomfort, and a third questioned patients with cognitive failure who maintained some ability to respond if something was bothering them.

Some 200 assessments were made of 116 patients. The kappa coefficient of agreement was 0.615. The sensitivity was 17% and specificity 99%. The positive predictive value was 88%, and the negative predictive value was 73%.

Due to the low sensitivity of this method, it cannot be recommended as a screening tool.

The purpose of this study was to determine whether the presence of gynecologic malignancies predicts the likelihood of a tertiary palliative care unit hospital admission.

In this study, patients admitted to a specialized tertiary palliative care unit (TPCU) with gynecologic malignancies were compared to national and provincial death rates to determine if gynecologic malignancy predicts admission, and subsequent death, in a TPCU.

Eighty-two gynecologic cancer patients were admitted to our TPCU over the 5- year study period. Out of all cancer deaths in the TPCU, death from ovarian cancer was 3.7% compared with 2.4% (p = 0.0068) of all cancer deaths in Manitoba and 2.3% (p = 0.0043) of all cancer deaths in Canada. Cervical cancer accounted for 1.7% of all our patients deaths compared with 0.7% (p = 0.0001) provincially and 0.6% (p = 0.0001) nationally. Uterine cancer deaths were not significantly different from the provincial and national death rates, whereas vulvar and fallopian cancers were too rare to allow for statistical analysis.

Gynecologic cancers may be predictive of admission to a palliative care unit.

To evaluate the sensitivity and specificity of the Distress Thermometer (DT) as a screening tool for emotional distress in oncological palliative care patients and to compare the DT with the Edmonton Symptom Assessment System-revised (ESAS-r) and the gold standard to determine the most appropriate assessment method in palliative psychological care.

Data were collected from psychological screening tests (ESAS-r and DT), and clinical interviews (gold standard) were conducted by a clinical psychologist specialist in palliative oncology from January 2021 to January 2022 in an oncology palliative care service.

The sample consisted of 356 first-time patients with a diagnosis of advanced cancer in palliative care. The most frequently reported oncological diagnoses were gastrointestinal tract (49.3%) and breast (18.3%). Most patients were female (n = 206; 57.9%), 60.4% were married/with a partner, 55.4% had between 6 and 9 years of schooling, and a median age of 57 (range, 46–65) years. The cutoff of the DT was 5, with a sensitivity of 75.88% and specificity of 54.3%. Emotional problems (sadness and nervousness) had a greater area under the curve (AUC) when measured using the DT than the ESAS-r; however, only in the case of the comparative sadness and discouragement was the difference between the AUC marginally significant.

The use of the DT as a screening tool in oncological palliative care is more effective in the evaluation of psychological needs than the ESAS-r. The DT, in addition to evaluation by an expert psychologist, allows for a more comprehensive identification of signs and symptoms to yield an accurate mental health diagnosis based on the International Classification of Diseases-11th Revision and/or Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition.

There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes.

The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words.

As a part of a larger study that included cognitive interviewing, we asked the question “what does the word healing mean to you?” Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities.

Thirty participants responded to the question “what does healing mean to you?” Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes.

Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients’ definitions provide greater insight into perceptions and expectations regarding the healing process.

The definition of sudden unexpected death (SUD) in patients with advanced cancer near the end of life (EOL) was unclear.

This study was conducted as a single-center retrospective analysis. We analyzed 1,282 patients who died of advanced cancer from August 2011 to August 2019 retrospectively. We divided into patients who died within 24 h after the acute change of general condition or others and analyzed risk factors by a multiple logistics method. The reason for SUD was found, the reason is detected by using an electronic medical record retrospectively. The risk factors in SUD were analyzed using age, sex, EOL symptom and treatment, the primary site of cancer, metastatic site of cancer, comorbidly, chemotherapy, and Eastern Cooperative Oncology Group Performance Status. The primary endpoint was to identify the frequency and risk factors of SUD in patients with advanced cancer near the EOL.

As a background, the median age is 73 years old, 690 males, 592 females, 227 gastroesophageal cancers, 250 biliary pancreatic cancers, 54 hepatocellular carcinomas, 189 colorectal cancer, 251 lung cancers, 71 breast cancers, 58 urological malignancies, 60 gynecological malignancies, 47 head and neck cancer, 31 hematological malignancies, and 22 sarcomas. The number of patients who died suddenly was 93 (7.2%) at EOL. In a multivariate analysis, Age (ORs 0.619), sex (ORs 1.700), patients with EOL delirium (ORs 0.483), nausea and vomiting (ORs 2.263), 1L or more infusion (ORs 3.479), EOL opioids (ORs 0.465), EOL sedations (ORs 0.339), and with cardiac comorbidity (ORs 0.345) were independent risk factors.

The frequency of patients who died suddenly was 7.2% (n = 93) at EOL. Age, sex, EOL symptom, EOL treatment, and cardiac comorbidity were independent risk factors in patients with advanced cancer near the EOL. Information on these risk factors is useful to explaining their EOL in advance.

The primary aims of this multicenter, prospective observational study were to investigate spiritual well-being, resilience, and psychosocial distress in an Italian sample of glioblastoma patients undergoing radiochemotherapy. The secondary aim was to explore the influence of demographic, clinical, and psychological characteristics on survival.

The assessment was conducted only once, within the first week of radiochemotherapy treatment. Spiritual well-being was evaluated by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp-12), and religious/spiritual beliefs and practices were evaluated by the System of Belief Inventory. Resilience was evaluated by the Connor−Davidson Resilience Scale (CD-RISC). Psychosocial distress was evaluated the by Distress Thermometer and Hospital Anxiety Depression Scale. We conducted an univariable analysis of overall survival (OS) using data from the most recent follow-up available, considering demographic and clinical variables that could influence survival. Follow-up was defined as either the time of death or the latest follow-up visit recorded.

We recruited 104 patients, and the median follow-up time was 18.3 months. “Distressed” patients had lower scores than “not distressed” patients on the FACIT-Sp-12 and CD-RISC. While OS was not significant according to the FACIT-Sp-12 threshold, the Kaplan−Meier log-rank test was 0.05 according to the CD-RISC threshold. Among demographic variables, age showed significant associations with OS (p = 0.011). Resilience showed significant associations with OS (p = 0.025).

Data showed that high spiritual well-being was associated with high resilience and an absence of psychosocial distress in our sample of glioblastoma patients undergoing radiochemotherapy. Patients with greater resilience survived longer than those with lesser resilience. Profiling spiritual well-being and resilience in glioblastoma patients undergoing radiochemotherapy can be seen as a resource to identify novel characteristics to improve clinical take-in-charge of glioblastoma patients.

Alzheimer’s disease is a chronic neurodegenerative disorder that results in total cognitive impairment and functional decline. Family members are the most usual caregivers worldwide, resulting in an increasing total burden and a subsequent degradation of their quality of life.

To evaluate the burden of care and quality of life among informal caregivers to Alzheimer patients in Egypt.

A descriptive research design was used. The study was conducted at outpatient clinics of El-Abbasya Mental Hospital in Cairo, Egypt. This study included 550 informal caregivers of Alzheimer patients. Data were gathered through questionnaires using the Sociodemographic Profile of Family Caregivers, an adopted version of the Montgomery Borgatta Caregiver Burden scale, and Health-Related Quality of Life Scale.

Nearly three quarters (73.5%) of the informal caregivers were female. Additionally, the physical burden among the informal caregivers was the highest (21.58 ± 8.13), while the psychological burden was the lowest (7.48 ± 25.35). Besides, around one-third (30%) of the informal caregivers had a total poor quality of life.

Total burden among informal caregivers of Alzheimer patients was relatively high (64.71 ± 26.86). Moreover, less than one-tenth (8%) of the informal caregivers for Alzheimer’s patients had a good quality of life, whereas more than half (62%) of them had an average quality of life. In the Egyptian context, ongoing health education initiatives for those who care for Alzheimer patients are essential, and additional research employing large study sample sizes in varied contexts is strongly advised.

The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient’s death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver’s meaning-making that occurred after the patient’s death.

In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver’s perspective before and after the death of the patient. Thematic content analysis method was conducted.

A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers’ recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, “Have I done enough?,” Significance in the timing of events, and Gaining strength and personal growth.

The deathbed is a salient time for family caregivers as they prepare for patient’s death. There are opportunities to provide support to the family based on the study findings.