To develop and validate Professional Bereavement Scale (PBS), a specific measurement tool for professional bereavement experiences.

An online cross-sectional survey collected data from 563 physicians and nurses from urban hospitals in Mainland China. Item consistency analysis, component factor analysis, exploratory factor analysis, and confirmatory factor analysis were run to develop and validate the scale. Correlational analysis was conducted to evaluate the psychometric property of the scale.

Two subscales of the PBS were developed: the 17-item Short-term Bereavement Reactions Subscale (PBS–SBR) and the 15-item Accumulated Global Changes Subscale (PBS–AGC). Four factors, namely, frustration and trauma, guilt, grief, and being moved, are involved in PBS–SBR. Five factors are involved in PBS–AGC, which are new insights, more acceptance of limitations, more death-related anxiety, less influenced by patient deaths, and better coping with patient deaths. Both subscales have good content validity, construct validity, and criterion validity, as well as satisfactory internal consistency and split-half reliability.

PBS is a specific assessment tool for professional bereavement which is clearly defined, comprehensive, rigorously tested, and generalizable to different professional caregivers from various departments. Unveiled constructs illustrate that professional bereavement experiences contain a professional dimension in addition to a personal dimension both in an event-specific and a global perspective, which distinguishes them from familial bereavement experiences.

Diagnosis of cancer is emotionally threatening not only for patients but also for their family caregivers (FC) who witness and share much of the illness experience. This study compares distress experienced by lung cancer patients and their FC during the year following the diagnosis.

A prospective cohort study of 206 patients recently diagnosed with inoperable lung cancer (participation rate 79.5%) and 131 FC (participation rate 63.6%) was conducted in an ambulatory oncology clinic in Quebec City (Canada). They completed validated questionnaires regarding their personal and psychological characteristics (Hospital and Anxiety Depression Scale—HADS), in the first months after the diagnosis of lung cancer and after 6 and 12 months. Univariate, bivariate, and linear mixed models were conducted to compare patient and FC distress.

At baseline, 7.8% of patients reported distress (HADS total score >15) and their mean distress score was 7.0 ± 4.9 (range 0–42). In contrast, 33.6% of FC presented significant distress and their mean distress score was 12.0 ± 7.2 (P < 0.0001). Proportions of patients and FC with distress remained relatively stable at 6 and 12 months, and at every time point, FC reported higher levels of distress compared to their relative with cancer (P < 0.0001). Comparable trends were found when looking at the mean scores of distress, anxiety, and depression throughout the study.

Being diagnosed with lung cancer and going through its different phases seems to affect more FC than patients. The psychological impact of such diagnosis appears early after the diagnosis and does not significantly change over time. These findings reinforce the importance for oncology teams, to include FC in their systematic distress screening program, in order to help them cope with their own feelings and be able to play their role in patient support and care throughout the cancer journey.

The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.

Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.

Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.

Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.

Caregivers have a great role in palliative care. Considering the difficult process of palliative care, the caregiver undertakes an extra burden with the responsibility of the patient. This study was carried out to evaluate the care burden and preparedness of caregivers who provide care for palliative care patients.

This study was conducted in the palliative care unit of a state hospital in Turkey between January and May 2019. No sample was selected in the study, and the study was carried out with individuals who were hospitalized in the palliative care unit and who volunteered to participate in the study between the specified dates. The data were collected with Patient Relative Questionnaire Form, Burden Interview, and Preparedness for Caregiving Scale.

The average Burden Interview score was found as 33.6, SD 13.03 in the study. Patient relatives perceived the patients they cared for as a burden at moderate levels. The Preparedness for Caregiving score average was found as 18.55, SD 6.83. It was found that patient relatives were moderately prepared to undertake the role of caregiver. It was found that care burden decreased as preparedness for caregiving increased and burden increased as preparedness for caregiving decreased (p = 0.001).

As a result of the study, it was found that caregivers of palliative patients had the moderate levels of care burden and preparedness for caregiving. It was found that as the preparedness levels of caregivers increased, their burdens decreased. Accordingly, it is important that nurses will plan nursing interventions by considering the factors that affect the care burden and preparedness of caregivers.

Older people are not traditionally expected to become caregivers. For this reason, the experience of caregiving in older persons has not been explored adequately in the research on gender differences. The objective of this study was to assess the caregiver burden among older family members who care for cancer patients facing the end of their lives, in order to compare their differences according to gender (male vs. female).

This is a cross-sectional study. A total of 102 older caregivers (aged ≥65 years) of hospice patients were interviewed through the Caregiver Burden Inventory (CBI). The sample group was divided into two gender subgroups.

Compared with male caregivers, the older female group reported significantly higher scores in the CBI–physical subscale (P = 0.028), and in the CBI, the overall score (P = 0.0399) confirmed by the generalized linear model (multivariate) evaluation that included possible predictors in the model. There were no significant differences in the other CBI subscale scores (time-dependent, developmental, social, and emotional).

Older female caregivers are at higher risk of experiencing burden and worse physical health compared with men. Further research is needed in modern palliative care to assess the role of gender differences in the experience of caregiving when the caregiver is an older person.

Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context.

As part of a secondary analysis, data derived from two qualitative primary studies on FCs’ burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement.

Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs’ experiences: “Connectedness,” “Religious Faith,” “Transcendence,” “Hope,” and a fifth overarching aspect which we named “Ongoing integration of spiritual experience.” Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs’ narratives.

In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs’ problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.

Palliative care is comprehensive supportive care addressing the suffering, pain, discomfort, symptoms, and stress of cancer and any serious life-threatening disease. It is a key part of care for our children living with cancer and is an important source of support for their families. The study aimed to assess the perception of pediatric oncology family care providers toward palliative care and its perceived barriers in Egypt.

Total number of 500 oncology children's family care providers was recruited. A descriptive research design was utilized. Researchers used three tools as Structured Interview Questionnaire to assess the participants' knowledge and perceived barriers, Attitude toward palliative care Likert Scale, and Reported Practices Observational Checklist. The study was conducted in outpatient cancer clinics affiliated with El-Nasr governmental hospital located at Port Said governorate.

51.8% of the total oncology children's family care providers had sufficient knowledge, 78.6% had a positive attitude, while,76.8% of them had inappropriate Practice towards palliative care.

The pediatric oncology family care providers had sufficient knowledge and a positive attitude toward palliative care, but their practices were inappropriate. Also, the majority of participants identified Lack of family care providers training in pediatric palliative care and improper communication between the health team and family care providers as the main barriers to providing palliative care to children. Providing a palliative care training program for family caregivers through continuing professional development is highly recommended besides further research studies using large probability samples at different settings.

To analyze the effect of DT on anxiety, depression, hopelessness, emotional distress, dignity-related distress, and quality of life (QoL) in a group of Mexican patients with stage IV LC undergoing active medical treatment with baseline emotional distress.

In this preliminary pretest–posttest study, patients received three sessions of DT and were evaluated with the HADS, Distress Thermometer, Patient Dignity Inventory, single-item questions, and QLQ-30.

In total, 24 out of 29 patients completed the intervention. Statistically significant improvements were found in anxiety, depression, emotional distress, hopelessness, and dignity-related distress with large effect sizes. Patients reported that DT helped them, increased their meaning and purpose in life, their sense of dignity, and their will to live, while it decreased their suffering. No changes were found in QoL.

DT was well accepted and effective in improving the emotional symptoms of LC patients with distress that were undergoing medical treatment. Although more research is warranted to confirm these results, this suggests that DT can be used in the context of Latin-American patients.

Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre.

Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed.

Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness.

To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

The provision of end-of-life (EOL) care has complex effects on both the professional and personal well-being of medical health personnel (MHP). Previous studies have mostly focused on negative or positive influences as mutually exclusive effects. This study offers a new conceptualization by applying a dialectical lens, looking at secondary traumatic stress (STS) and post-traumatic growth (PTG) as dual possible coexisting phenomena. The creation of four theoretically possible profiles, based on the combinations of high or low levels in each dimension, offers a practical translation of this idea toward intervention development.

Data were collected at a large tertiary pediatric medical center (n = 1,123) aiming at assessing all personnel. Research methods included collecting demographic data and using validated scales to assess STS, PTG, burnout, compassion satisfaction, and both personal and professional social support.

We classified four response profiles according to the STS and PTG levels: (1) Dialectical-impact, high STS/high PTG, (2) Growth-dominant, high PTG/low STS, (3) Stress-dominant, high STS/low PTG, and (4) Limited-impact, low STS/low PTG. The four profiles differed based on profession, but not other demographics. Physicians were represented significantly higher in the Stress-dominant profile; nurses were highly represented in the Dialectical-impact profile. A significant difference was found when adding reported EOL care as a distinct factor with a higher relative proportion of the “dialectical” response among those reporting providing EOL care.

Findings from this study point toward the recognition and understanding of the complexity resulting from the provision of EOL care. A more complex profile classification, including the dialectical profile, may reflect a broader tendency to ways that MHP are affected by their work. Introducing “dialectical thinking” can lead to more personalized and precise intervention planning for MHP. Tailored interventions promoting personal and professional well-being, based on individual profiles, can contribute to more effective interventions and better resource utilization.

This research aims to examine the effect of playing games with toys made of medical materials in children with cancer on pain that occurs during intravenous (IV) treatment.

The randomized controlled clinical trial was conducted between May 2016 and February 2018. The study sample comprised 110 children (experimental group 55; control group 55), determined using power analysis from the study population. The data were collected by the researcher, using face-to-face interview techniques, the Information Form, and Wong–Baker FACES Pain Rating Scale (WBS).

The pre- and post-test pain mean scores of patients in the experimental group were 2.27 ± 0.91 and 0.43 ± 0.66, respectively (p = 0.0001). The pre- and post-test pain mean scores of patients in the control group were 1.72 ± 0.82 and 3.34 ± 0.77, respectively (p = 0.0001).

The experience of playing with toys made from materials used for invasive procedures relieves pain the during IV treatment.

End-of-life and anticipatory medications (AMs) have been widely used in various health care settings for people approaching end-of-life. Lack of access to medications at times of need may result in unnecessary hospital admissions and increased patient and family distress in managing palliative care at home. The study aimed to map the use of end-of-life and AM in a cohort of palliative care patients through the use of the Population Level Analysis and Reporting Data Space and to discuss the results through stakeholder consultation of the relevant organizations.

A retrospective observational cohort study of 799 palliative care patients in 25 Australian general practice health records with a palliative care referral was undertaken over a period of 10 years. This was followed by stakeholders’ consultation with palliative care nurse practitioners and general practitioners who have palliative care patients.

End-of-life and AM prescribing have been increasing over the recent years. Only a small percentage (13.5%) of palliative care patients received medications through general practice. Stakeholders’ consultation on AM prescribing showed that there is confusion about identifying patients needing medications for end-of-life and mixed knowledge about palliative care referral pathways.

Improved knowledge and information around referral pathways enabling access to palliative care services for general practice patients and their caregivers are needed. Similarly, the increased utility of screening tools to identify patients with palliative care needs may be useful for health care practitioners to ensure timely care is provided.

The purpose of this study is to identify whether there is an opportunity for improvement to provide palliative care services after a serious fall. We hypothesized that (1) palliative care services would be utilized in less than 10% of patients over the age of 65 who fall and (2) more than 20% of patients would receive aggressive life-sustaining treatments (LSTs) prior to death.

Using the 2017 Nationwide Inpatient Sample, we identified patients who were admitted to the hospital with a fall (ICD-10 W00-W19) and were hospitalized at least two days with valid discharge data. Palliative care services (Z51.5) or LSTs (cardiopulmonary resuscitation, ventilation, reintubation, tracheostomy, feeding tube placement, vasopressors, transfusion, total parenteral nutrition, and hemodialysis) were identified with ICD-10 codes. We examined the use of palliative care or LSTs by discharge destination (home, facility, and death). Logistic regression was used to identify factors associated with palliative care.

In total, 155,241 patients were identified (median 82 years old, interquartile range 74–88); 2.5% died in hospital, and 69.4% were transferred to a facility. Palliative care occurred in 4.5% of patients, and LST occurred in 15.1%. Patients who died were significantly more likely to have had palliative care (50.1% vs. 3.4% of home or facility discharges) and were more likely to have an LST [53.0% vs. 9.8% (home) vs. 15.9% (facility)]. Palliative care was associated with both death [adjusted odds ratio (AOR) 19.84, 95% confidence interval (CI) 18.39–21.41, p < 0.001] and LST (AOR 1.36, 95% CI 1.27–1.46, p < 0.001).

Palliative care is associated with both death and LST, suggesting that physicians use palliative care as a last resort after aggressive measures have been exhausted. Patients who fall would likely benefit from the early use of palliative care to align future goals of care.

Telephone availability is integrated into our home-based palliative care team (HPCT) with the aim of helping terminally ill patients and their caregivers alleviate their physical and psychosocial suffering, in addition to the team's home visits. We aimed to compare the differences between non-callers (patients with no phone calls during the team's follow-up period) vs. callers (≥1 phone call during the team's follow-up period) across sociodemographic, clinical, physical, and psychosocial variables.

Retrospective analysis of all patients with and without phone call entries registered in our anonymized database, from October 2018 to September 2020.

We analyzed 389 patients: 58% were male, and the average age was 71 years old; 84% had malignancies, with a mean palliative performance status of 45%. The majority of patients (n = 281, 72%) made at least one phone call to HPCT. On average, a mean of 2.5 calls (SD = 3.61; range: 0–26) per patient was registered. Callers compared with non-callers more frequently lived with someone (p = 0.030), preferred home as a place to die (p = 0.039), had more doctor (p = 0.010) and nurse home visits (p = 0.006), a prolonged HPCT follow-up time (p = 0.053), along with more frequent emergency room visits (p < 0.001) and hospitalizations (p = 0.043). Moreover, those who made at least one phone call to the HPCT had a higher frequency of conspiracy of silence (p = 0.046), anxiety (p = 0.044), and lower palliative performance status (p = 0.001). No statistically significant associations or differences were found for the other variables.

Several factors seem to correlate with an increased number of phone calls, and physical suffering does not play a relevant role in triggering contacts, in contrast with psychosocial and other clinical factors.

The spiritual well-being scale (SWBS) is a widely used clinical scale which should be evaluated for Iranian patients with cancer. The aim of this study is to evaluate the psychometric properties of the Persian version of the SWBS in Iranian patients with cancer.

This cross-sectional, methodological study was conducted among Iranian patients with cancer (n = 400). The participants were recruited using convenience sampling. The content, construct, convergent and discriminant validity, and reliability of the Persian version of the SWBS were evaluated.

A two-factor structure for the scale was indicated with the factors being: connecting with God and meaningless life that explained 54.18% of the total variance of the concept of spiritual well-being. The results demonstrated the model had a good fit. Cronbach's alpha, McDonald's omega, and the inter-item correlation values of the factors indicated good internal consistency of the scale.

These results suggest that the Persian version of the SWBS is a reliable and valid measure to assess the spiritual well-being of patients with cancer through 16 items related to connecting with God and meaningless life.

Fatigue is having high prevalence and increased acknowledgment of negative effect on the patient's well-being which has resulted in fatigue being important research variable in breast cancer patients. The recent development shows greater receptivity of health professionals to assessing cancer-related fatigue (CRF). In this review, an attempt has been made to identify CRF instruments which have been used in breast cancer patients with the detailed description about the instruments and their psychometric properties.

A search was conducted from January 2000 to April 2020 from electronic databases such as PubMed, Cochrane, Embase, and Google Scholar. The studies were included if the instrument was used to measure fatigue in breast cancer patients and its description and psychometric properties reported in breast cancer patients. The search was limited to studies in the English language and use of English version of instruments.

Among 34 CRF instruments, 9 instruments were included according to inclusion and exclusion criteria. From nine instruments, six were multidimensional, two were unidimensional, and one instrument was quality-of-life (QOL) subscale. All the scales have showed accepted reliability and validity in breast cancer patients. A minimal clinically important difference was available for Multidimensional Fatigue Symptom Inventory — Short Form, Brief Fatigue Inventory, Piper Fatigue Scale — Revised, FACIT Fatigue scale, and Fatigue symptom inventory instruments.

This review will help healthcare providers who are dealing with breast cancer patients to acknowledge and better understand what their patients are experiencing. The most appropriate tool will allow healthcare providers to use for holistic assessment of CRF. The instrument will help them to monitor their patient's condition or treatment progress, so it can be incorporated into treatment decisions for better management of fatigue.

This review provides an overview of the existing literature on the importance of care coordination for lung cancer care and other cancers in general. The review is inclusive of the burden of cancer, with a special reference to lung cancer, as well as challenges and achievements relating to cancer care coordination.

We conducted a search of online databases of peer-reviewed studies published in the English language. The analysis for this review has been packaged into themes in order to generate results that can inform researchers and cancer health professionals, on the existing gaps necessary for developing appropriate intervention strategies and policy guidelines.

Cancer is a complex condition that often requires multiple interventions provided by a variety of health professionals within the healthcare continuum. This paper reviewed research studies that explored the supportive care needs of cancer patients. The results are presented in three superordinate themes, namely (a) cancer as a healthcare priority in South Africa (SA), (b) making a case for coordinated cancer care in SA, and (c) care coordination: a poorly defined, yet complex concept. One major need identified was the requirement of informational support. Other essential needs included referral, emotional, and financial support.

The identification of current obstacles has the potential to guide the development of a model to improve quality coordinated cancer health care. It remains that limited research exists around cancer services and cancer care in the South African region. This narrative review identified common elements and barriers to care for lung cancer patients and survivors, and offers recommendations for developing clinical care models.

Spiritual distress is a common symptom among patients with cancer. Spiritual injury (SI), a type of spiritual distress, occurs when there is a breakdown in the relationship between the individual and their higher power. Patients who experience spiritual injury may have poor health outcomes.

A case report of a woman with stage IV non-small cell lung cancer who had experienced a SI.

The palliative care team, in collaboration with the palliative care chaplain, was able to recognize that the patient had experienced a SI. They were able to help the patient to process and reflect upon this experience and ultimately treat her suffering.

All palliative care providers should assess their patients’ spiritual health and monitor for the existence of SI.