Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families.

A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts.

The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed.

The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.

Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out to describe clinical and cultural characteristics of pediatric end-of-life patients in a majority Jewish and Muslim country with religious and legal constraints around end-of-life care.

We conducted a retrospective chart review of 78 pediatric patients who died during a 5-year period and could potentially have utilized pediatric palliative care services.

Patients reflected a range of primary diagnoses, most commonly oncologic diseases and multisystem genetic disorders. Patients followed by the pediatric palliative care team had less invasive therapies, more pain management and advance directives, and more psychosocial support. Patients from different cultural and religious backgrounds had similar levels of pediatric palliative care team follow-up but certain differences in end-of-life care.

In a culturally and religiously conservative context that poses constraints on decision-making around end-of-life care, pediatric palliative care services are a feasible and important means of maximizing symptom relief, as well as emotional and spiritual support, for children at the end of life and their families.

Patients with metastatic upper gastrointestinal (GI) cancer may experience a large physical symptom burden. However, less is known about existential, social, and psychological symptoms. To provide the patient with palliative care, quality-of-life questionnaires are used for structured needs assessment. These are sporadically implemented, and there seems to be uncertainty to the efficiency of current practice. The aim of study was to explore the experienced assessment-process and treatment of palliative symptoms, as well as the experienced symptom burden, in patients with metastatic upper GI cancer.

Qualitative, semi-structured interviews were conducted in 10 patients with metastatic upper GI cancer. Data were analyzed using content analysis.

The patients did not expect treatment for all physical symptoms. Existential symptoms revolved around death and dying, social issues were mainly related to family, and psychological issues were based in the continuous dealing with serious illness. Existential, social, and psychological symptoms were mostly not considered part of the expected care when admitted to hospital. Patients had only vague recollections of their experiences with structured needs assessment, and the process had been inconsequential in the treatment of symptoms.

Patients with upper GI cancer experience symptoms related to all 4 areas of palliative care being physical, existential, social, and psychological, but these are differentiated in the way patients perceive their origins and treatability. Structured needs assessment was not routinely carried out, and in cases where this had been done, no follow-up was effectuated. This calls for increased focus and proper implementation for the process to be relevant in the treatment of palliative symptoms.

Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.

The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things – such as a period of ordinary family life.

Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

Recent studies on the quality of life in women with breast cancer show a high prevalence of signs and symptoms that should be the focus of palliative care (PC), leading us to question the current role they play in addressing breast cancer. Therefore, the objective of this review is to map the scope of available literature on the role of PC in the treatment of women with breast cancer.

This is a methodologically guided scoping review by the Joanna Briggs Institute and adapted to the PRISMA Extension for Scoping Reviews (PRISMA-ScR) Checklist for report writing. Systematic searches were conducted in 8 databases, an electronic repository, and gray literature. The searches were conducted with the support of a librarian. The study selection was managed through the RAYYAN software in a blind and independent manner by 2 reviewers. The extracted data were analyzed using the qualitative thematic analysis technique and discussed through textual categories.

A total of 9,812 studies were identified, of which only 136 articles and 3 sources of gray literature are included in this review. In terms of general characteristics, the majority were published in the USA (35.7%), had a cross-sectional design (44.8%), and were abstracts presented at scientific events (19.6%). The majority of interventions focused on palliative radiotherapy (13.6%). Thematic analysis identified 14 themes and 12 subthemes.

Our findings offer a comprehensive view of the evidence on PC in the treatment of breast cancer. Although a methodological quality assessment was not conducted, these results could guide professionals interested in the topic to position themselves in the current context. Additionally, a quick synthesis of recommendations on different palliative therapies is provided, which should be critically observed. Finally, multiple knowledge gaps are highlighted, which could be used for the development of future studies in this field.

Discussing end-of-life (EOL) issues with patients remains challenging for health professionals. Physicians may use various expressions, including euphemistic ones, when disclosing the prognosis to their patients to reduce their psychological impact. However, the actual expressions of EOL disclosure in clinical practice are unclear. This study aims to investigate the expressions used in EOL disclosures and explore their associated factors.

A retrospective chart review was conducted enrolling all the patients who died in a university-affiliated hospital. Expressions used in the EOL disclosure were qualitatively analyzed. The patients’ participation rate and length from the discussion to death were investigated.

EOL disclosures were observed in 341 of 358 patients. The expressions used by the physicians were categorized into 4 groups; Group 1: Clear presentation of life expectancy (n = 106; 31.1%), Group 2: Euphemistic presentation of life expectancy (n = 24; 7.0%), Group 3: Presentation of risk of sudden death (n = 147; 43.1%), Group 4: No mention on life expectancy (n = 64; 18.8%). The proportion of male patients was higher in Group 2 (79%) and lower in Group 4 (56%). Patients with cancer accounted for approximately 70% of Groups 1 and 4, but only approximately 30% of Group 3. The patient participation rate was highest in Group4 (84.4%), followed by Group 2 (50.0%). The median time from EOL disclosure to death was longer in Groups 1 and 4 (26 and 29.5 days, respectively), compared to Groups 2 and 3 (18.5 and 16 days, respectively).

A variety of expressions are used in EOL disclosure. Patterns of communication are influenced by patients’ gender and type of illness (cancer or noncancer). Euphemisms do not seem to facilitate timely disclosure of life expectancy or patient participation. For health professionals, not only devising the expressions to alleviate their patients’ distress when breaking bad news but also considering the communication process and patient background are essential.

The objective of this article is to describe the profile of the population attended to by the palliative geriatrics clinic and to evaluate the symptomatic control derived from the care provided.

During 2017 a model based on a holistic approach was implemented, in this model the team geriatric palliative care plays a fundamental role by being part of the palliative care team and functioning as a liaison with the oncology team and other required services. We outlined the profile of 100 patients aged 70 and older seen between 2017 and 2019 at our geriatric palliative care clinic. Descriptive statistics were used. In addition, the symptoms and the care clinic model effect on the symptomatic control were analyzed, as well as the complexity of patients in palliative care with IDC-Pal.

The patients median age was 83.5 years. Patients were classified by type of management: 47% within the supportive care group and 53% with palliative care only; 58% had metastatic disease and 84% presented at least 1 comorbidity. Frailty was observed in 78% and a Karnofsky scale of 60 or less was observed in 59% of the overall population.

Elderly cancer patients have a complex profile and may have multiple needs. Integrating geriatric palliative care can help to provide better and personalized care along with symptomatic control. Further studies are required to establish the ideal care model for these patients. Importantly, a personalized treatment with a geriatric palliative care specialist is a key element.

The PG‐13‐Revised (PG-13-R) is a self-report measure to assess prolonged grief disorder (PGD) in terms of Diagnostic and Statistical Manual of Mental Disorders, fifth revision, Text Revision. This measure has been shown to yield good psychometric properties in Western samples. This study aimed to evaluate the psychometric properties of the Persian PG-13-R.

Three hundred forty-seven individuals (209 women and 138 men) fully completed the scales. The participants were recruited using convenience sampling. The confirmatory factor analysis (CFA), convergent and divergent validity, and reliability of the Persian version of the PG-13-R were evaluated.

CFA results of a unidimensional model support the construct validity of this version of the PG-13-R. The results of this study demonstrated that this version of the PG-13-R has internal consistency reliability (omega coefficient of 0.93), and the test–retest reliability with an interval of 6 weeks was 0.89. The convergent and divergent validity was shown with significant correlations between the PG-13-R and measures of depression, PTSD, functional impairment, and hope.

Overall, the Persian version of the PG-13-R showed good psychometric properties in the Iranian population.

Our study aimed to analyze and compare the grief experiences of individuals in Iran who lost family members to COVID-19 and those who lost loved ones to other natural causes.

In this study, telephone interviews were conducted with 640 first-degree relatives, and finally, a total of 395 people remained in the research. Participants answered the Prolonged Grief Questionnaire (PG-13-R) and Grief Experience Questionnaire.

The results showed that the most common symptoms and features of grief were feeling guilt, searching for an explanation, somatic reactions, and rejection, with no significant difference observed between the 2 death groups. However, the average scores for these symptoms were higher in the COVID-19 death group. Moreover, the majority of bereaved reported signs and symptoms of prolonged grief, with a higher percentage in the COVID-19 death group, although there was no significant difference between the 2 death groups in terms of the distribution of symptoms and signs of prolonged grief. These findings suggest that the bereavement process can be challenging, and losing a loved one to COVID-19 may lead to more intense experiences of grief.

The study reveals high levels of guilt, searching for meaning, somatic reactions, and rejection among COVID-19 grievers. Losing loved ones to the pandemic appears linked to more intense, prolonged grief symptoms.

Existential guilt is a deep and multidimensional concept that is correlated with concepts, such as in/authenticity, existential anxiety, decisiveness, and personal and social responsibility. The aim of the present study is to investigate the experience of existential guilt among cancer patients.

The present research was conducted with a qualitative method with a content analysis design. A purposeful sampling method was used to select the participants and the sampling procedure went on until we reached data saturation. Data were obtained using semi-structured interviews with the participants.

From a total of 18 interviews, 94 codes related to existential guilt were obtained. After the analysis, three main concepts were extracted: (1) incompleteness, (2) passivity, and (3) feelings of harm to self and others. Each of these had a number of subcategories.

The participants of the present research were found to experience existential guilt in different ways. The research showed that it is necessary to find the sources of existential guilt in order that effective therapeutic attention can be given cancer patients.

The demand of palliative care is increasing due to the aging population and treatment hesitancy or intentional avoidance compromises symptom management.

To identify patient beliefs associated with medication hesitancy by using the theory of planned behavior (TPB) namely, attitudes, subjective norms, behavioral intention, and perceived behavioral control associated with medication hesitancy or intentional noncompliance by avoidance.

The Preferred Reporting Items for Systematic Reviews and Meta-Analysis guideline was followed to conduct a systematic literature search involving the CINAHL, Embase, MEDLINE, and PsycINFO databases from inception until March 2022. Hand-searched articles from reference lists and gray literature were included. Thematic analysis was conducted on qualitative data and triangulated with quantitative data.

About 554 articles were retrieved from the literature search and 17 articles were included based on the eligibility criteria. Three subthemes that were identified under TPB constructs were attitude: negative attitude toward medications, passive attitude toward illness and inaccurate information about disease or medication; one subtheme was identified under subjective norms: perceived negative opinions from others; and one subtheme was identified under perceived behavioral control: perception of manageable symptoms. Quantitative data provided triangulation of qualitative findings related to fear of addiction and side effects, feelings of hopelessness, unclear direction and information, social stigma, endurable symptoms, and illness as determinants for medication avoidance.

This systematic review highlighted some patient beliefs related to medication hesitancy or avoidance. Clinicians should take patient beliefs and concerns into consideration when creating treatment regimens for people receiving palliative care to optimize medication adherence and the quality of care.

To identify the patients who are most likely to participate in discussions about palliative care (PC) and advance care planning (ACP), and to determine their preferred timing and approach of discussion.

The study included women aged 18–75 years diagnosed with breast cancer. In the quantitative phase, sociodemographic and clinical characteristics, knowledge, decision-making, and stigmas were evaluated. The qualitative phase included questions about patients’ understanding, timing, and method of discussing PC and ACP, which were analyzed by Bardin’s content analysis.

In Phase 1, a total of 115 participants were included, with 53.04% completing both phases and 46.96% declining further participation. Those who completed both phases exhibited higher rates of marriage and educational attainment, while those who declined Phase 2 had a higher prevalence of advanced-stage cancer and palliative treatment. Completion of both phases was associated with a greater knowledge of reality and increased awareness of PC and ACP. Furthermore, the qualitative analysis revealed 5 convergent themes: timing, demystification, patient empowerment, misconception elimination, and open communication. These themes informed the development of a conceptual model that provides a framework for discussing PC and ACP with patients at different stages of cancer diagnosis and treatment, highlighting appropriate and inappropriate approaches and timing.

Early discussion is beneficial, but withholding information or infringing on autonomy should be avoided. The study reveals that married and highly educated individuals tend to be more receptive to these discussions. However, patients with late-stage cancer tend to decline participation. Patients value open communication, demystification of PC, and empowering discussions that eliminate misunderstandings. Efforts should be made to reach patients with limited familiarity, particularly those with late-stage cancer, to increase their receptiveness to enable well-informed decision-making.

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.

Managing cancer symptoms while patients receive systemic treatment remains a challenge in oncology. The use of complementary and alternative medicine (CAM) approaches like virtual reality (VR) and neurofeedback (NF) in tandem with systemic treatment might reduce symptom burden for patients. The combination of VR + NF as a CAM intervention approach is novel and understudied, particularly as it relates to supportive cancer care. The purpose of this study is to summarize our VR + NF study protocol and share preliminary results regarding study retention (across 2 treatment sessions) and preliminary impact of VR or VR + NF on patient-reported outcomes such as anxiety and pain.

We utilized a parallel arm trial design to compare preliminary impact of VR only and VR + NF on cancer symptoms among patients who are actively receiving cancer treatment.

Sixty-seven percent (n = 20) of participants returned to participate in a second VR session, and the rates of return were the same between the VR groups. Patients in the VR + NF group showed improvements in anxiety after both sessions, while patients in the VR only group showed significant improvements in pain and depression after both sessions. Patients in the VR + NF group showed improved pain after session 1.

This study demonstrates that patients can be retained over multiple treatment sessions and that VR and NF remain promising treatment approaches with regard to impact on patient-reported outcomes like anxiety and pain.

The COVID-19 pandemic presented many challenges for patients with palliative care needs and their care providers. During the early days of the pandemic, visitors were restricted on our palliative care units. These restrictions separated patients from their families and caregivers and led to considerable suffering for patients, families, and health-care providers. Using clinical vignettes that illustrate the suffering caused by visiting restrictions during the pandemic, the introduction of a new concept to help predict when health-care providers might be moved to advocate for their patients is introduced.

We report 3 cases of patients admitted to a palliative care unit during the COVID-19 pandemic and discuss the visiting restrictions placed on their families. In reviewing the cases, we coined a new concept, the “Suffering Quotient” (SQ), to help understand why clinical staff might be motivated to advocate for an exemption to the visiting restrictions in one situation and not another.

This paper uses 3 cases to illustrate a new concept that we have coined the Suffering Quotient. The Suffering Quotient (SQ) = Perceived Individual (or small group) Suffering/Perceived Population Suffering. This paper also explores factors that influence perceived individual suffering (the numerator) and perceived population suffering (the denominator) from the perspective of the health-care provider.

The SQ provides a means of weighing perceived patient and family suffering against perceived contextual population suffering. It reflects the threshold beyond which health-care providers, or other outside observers, are moved to advocate for the patient and ultimately how far they might be prepared to go. The SQ offers a potential means of predicting observer responses when they are exposed to multiple suffering scenarios, such as those that occurred during the COVID-19 pandemic.

Patients with malignant wounds suffer from physical and psychological symptom burden. Despite psychological support being required, the impact of malignant wounds on patients’ psychological distress is poorly investigated. We evaluated psychological distress associated with malignant wounds for patients at their end of life.

This study used the secondary analysis of the results of a large prospective cohort study, which investigated the dying process among patients with advanced cancer in 23 palliative care units in Japan. The primary outcome of this study was the prevalence of moderate to severe psychological symptom burden, evaluated by the Integrated Palliative Care Outcome Scale (IPOS)-feeling at peace scores of 2–4. In addition, the factors affecting psychological symptoms were investigated. The quality of death was also evaluated upon death using the Good Death Scale score.

Out of the total 1896 patients, 156 had malignant wounds (8.2%). Malignant wounds were more common in female and young people. The breast, head, and neck were the most prevalent primary sites. More patients with malignant wounds had IPOS-feeling at peace scores of 2–4 than patients without malignant wounds (41.0% vs. 31.3%, p = 0.024). Furthermore, psychological distress was associated with moderate to severe IPOS-pain and the frequency of dressing changes. The presence of malignant wounds did not affect the quality of death.

This study showed increased psychological distress due to malignant wounds. Patients with malignant wounds require psychological support in addition to the treatment of physical symptoms for maintaining their quality of life.