Explore humanitarian healthcare professionals’ (HCPs) perceptions about implementing children’s palliative care and to identify their educational needs and challenges, including learning topics, training methods, and barriers to education.

Humanitarian HCPs were interviewed about perspectives on children’s palliative care and preferences and needs for training. Interviews were transcribed, coded, and arranged into overarching themes. Thematic analysis was performed using qualitative description.

Ten healthcare workers, including doctors, nurses, psychologists, and health-project coordinators, were interviewed. Participants identified key patient and family-related barriers to palliative care in humanitarian settings, including misconceptions that palliative care was synonymous with end-of-life care or failure. Health system barriers included time constraints, insufficient provider knowledge, and a lack of standardized palliative care protocols. Important learning topics included learning strategies to address the stigma of serious illness and palliative care, culturally sensitive communication skills, and pain and symptom management. Preferred learning modalities included interactive lectures, role-play/simulation, and team-based case discussions. Participants preferred online training for theoretical knowledge and in-person learning to improve their ability to conduct serious illness conversations and learn other key palliative care skills.

Palliative care prevents and relieves serious illness-related suffering for children with life-threatening and life-limiting conditions; however, most children in humanitarian settings are not able to access essential palliative care, leading to preventable pain and suffering. Limited palliative care knowledge and skills among HCPs in these settings are significant barriers to improving access to palliative care. Humanitarian HCPs are highly motivated to learn and improve their skills in children’s palliative care, but they require adequate health system resources and training. These findings can guide educators in developing palliative care education packages for humanitarian HCPs.

Communication is essential to medical care and is key in improving patient outcomes. We aimed to understand clinicians’ emotions when communicating with patients in palliative care (PC) and the evolution of their communication skills.

Between October and November 2021, 231 Swiss PC clinicians participated in an online cross-sectional survey (65% nurses, 35% physicians). Three questions invited participants to reflect on the development of their communication skills and on their emotions when communicating with patients in PC. Answers to these questions were analyzed thematically.

Constantly adapting to complex emotions in communication was the overarching theme. Three main themes further allowed for an understanding of different communication challenges: emotions as a dynamic compass, not always under control, and evolving comfort and competence through personal and professional growth. In evolving comfort and competence, 6 strategies helped clinicians overcome fears and improve their confidence in communication: learning by doing and formal training, integrating life experiences and gaining insight from private life, taking time, collaborating and connecting with peers, acknowledging individuality, and connecting with one’s own and patients’ emotions.

Participants described powerful emotional experiences when communicating with patients in PC, underscoring the emotional labor involved in PC communication. Our study highlights the need to re-conceptualize emotions as a valuable resource rather than a hindrance in clinical practice. The interplay between personal and professional identities in shaping communication skills, emphasizes the importance of emotional competence as a core professional skill. As clinicians often develop these skills individually, our findings suggest a need for earlier integration of emotional competence training in medical education, along with ongoing support through collaboration, and improved allocation of time resources, to enhance clinician well-being and patient care.

People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success – coordination and family caregiver – are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.

Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.

Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.

Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated “facilitator” or single point of contact for families, as well as the development of tailored communication strategies.

In home-based care for severely ill patients, family caregivers’ contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers’ experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.

This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.

The results indicate that the intervention resonated with the family caregivers’ situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient’s progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.

This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.

To explore the potential of incorporating personally meaningful rituals as a spiritual resource for Western secular palliative care settings. Spiritual care is recognized as critical to palliative care; however, comprehensive interventions are lacking. In postmodern societies, the decline of organized religion has left many people identifying as “no religion” or “spiritual but not religious.” To assess if ritual could provide appropriate and ethical spiritual care for this growing demographic requires comprehensive understanding of the spiritual state and needs of the secular individual in postmodern society, as well as a theoretical understanding of the elements and mechanisms of ritual. The aim of this paper is to provide a comprehensive and theoretically informed exploration of these elements through a critical engagement with heterogeneous literatures.

A hermeneutic narrative review, inspired by complexity theory, underpinned by a view of understanding of spiritual needs as a complex mind–body phenomenon embedded in sociohistorical context.

This narrative review highlights a fundamental spiritual need in postmodern post-Christian secularism as need for embodied spiritual experience. The historical attrition of ritual in Western culture parallels loss of embodied spiritual experience. Ritual as a mind–body practice can provide an embodied spiritual resource. The origin of ritual is identified as evolutionary adaptive ritualized behaviors universally observed in animals and humans which develop emotional regulation and conceptual cognition. Innate human behaviors of creativity, play, and communication develop ritual. Mechanisms of ritual allow for connection to others as well as to the sacred and transcendent.

Natural and innate behaviors of humans can be used to create rituals for personally meaningful spiritual resources. Understanding the physical properties and mechanisms of ritual making allows anyone to build their own spiritual resources without need of relying on experts or institutionalized programs. This can provide a self-empowering, client-centered intervention for spiritual care.

Supporting family caregivers (FCs) is a critical core function of palliative care. Brief, reliable tools suitable for busy clinical work in Taiwan are needed to assess bereavement risk factors accurately. The aim is to develop and evaluate a brief bereavement scale completed by FCs and applicable to medical staff.

This study adopted convenience sampling. Participants were approached through an intentional sampling of patients’ FCs at 1 palliative care center in Taiwan. This cross-sectional study referred to 4 theories to generate the initial version of the Hospice Foundation of Taiwan Bereavement Assessment Scale (HFT-BAS). A 9-item questionnaire was initially developed by 12 palliative care experts through Delphi and verified by content validity. A combination of exploratory factor analysis (EFA), reliability measures including items analysis, Cronbach’s alpha and inter-subscale correlations, and confirmatory factor analysis (CFA) was employed to test its psychometric properties.

Two hundred seventy-eight participants conducted the questionnaire. Three dimensions were subsequently extracted by EFA: “Intimate relationship,” “Existential meaning,” and “Disorganization.” The Cronbach’s alpha of the HFT-BAS scale was 0.70, while the 3 dimensions were all significantly correlated with total scores. CFA was the measurement model: chi-squared/degrees of freedom ratio = 1.9, Goodness of Fit Index = 0.93, Comparative Fit Index = 0.92, root mean square error of approximation = 0.08. CFA confirmed the scale’s construct validity with a good model fit.

This study developed an HFT-BAS and assessed its psychometric properties. The scale can evaluate the bereavement risk factors of FCs in clinical palliative care.

More than 50% of patients with dementia visit the emergency department (ED) each year. Patients with dementia experience frequently unrelieved symptoms that can benefit from palliative care. Response to palliative care needs in the ED can be quite challenging and access to palliative care is generally scarce. The aim of this scoping review is to assess ED use and responsiveness to palliative care needs of patients with dementia in their last year of life.

A scoping literature review following the Joanna Briggs Institute methodology. Electronic search of the literature was undertaken in Medline (PubMed), Web of Science, Scopus, Scielo, and APA PsycInfo, last updated on 19 February 2024.

Twenty-four studies were identified and confirmed that patients with dementia frequently resort to the ED near the end of life, frequently more than once in their last year of life. Eight studies directly addressed palliative care needs, suggesting significant rates of palliative care needs among patients with dementia and in comparison, to other oncological or non-oncological conditions. Infections and neuropsychiatric symptoms were the main reasons of admission to the ED. Access to palliative care was confirmed to be low.

This scoping review indicates that patients with dementia frequently resource to the ED in their last year of life with unmet palliative care needs. Although scarce access to palliative care and the existence of important barriers in the ED, palliative care intervention in this setting can be seen as an opportunity to attend palliative care needs and referral to palliative care services.

This study aimed to evaluate the psychometric properties of the Persian version of the International ICD-11 Prolonged Grief Disorder Scale (IPGDS).

A total of 554 participants (18 years and older, 326 women) completed the Persian IPGDS along with other measures. Participants were recruited through convenience sampling. The study assessed confirmatory factor analysis (CFA), convergent validity, and reliability of the Persian IPGDS.

CFA supported a 4-dimensional model, indicating good structural validity of the Persian IPGDS. Convergent validity was established through correlations with measures of depression, anxiety, and PTSD.

These findings suggest that the Persian IPGDS exhibits satisfactory psychometric properties, making it a valid tool for measuring Prolonged Grief Disorder (PGD) in Persian-speaking Iranian adults.

This review provides an overview of patient-reported outcome measure (PROMs) utilized to assess the impact of advance care planning (ACP) among older adults and evaluates their psychometric properties.

The inclusion criteria were as follows: (1) studies that targeted older adults; (2) studies using of any type of measurement tools that measure patient-reported ACP program outcomes; and (3) studies published in English or Korean. Following PRISMA guidelines, a systematic review was conducted, encompassing electronic searches across 5 databases including PubMed, EMBASE, Cochrane Library, CINHAL, and PsycINFO and manual searches of umbrella reviews on ACP interventions. General characteristics of the selected measures were extracted, and their methodological quality was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist.

Out of 19,503 studies initially identified, 74 met the inclusion criteria, reporting on a total of 202 measures. These measures were categorized into 4 domains reflecting the targets of ACP interventions: process (n = 56), action (n = 18), process and action (n = 16), quality of care (n = 63), and health status (n = 49). Despite the breadth of measures identified, none fully met all recommended psychometric properties outlined in the checklist.

While this review aids in the selection of measures for both practical and research purposes, it underscores the necessity for further validation of PROMs in assessing ACP outcomes in older adults, advocating for rigorous psychometric evaluations and adherence to standards like the COSMIN checklist to ensure reliable and valid data. It suggests the need for shortened versions and researcher assistance to address the challenges older adults face with self-reported PROMs and improve participation rates.

Recent studies have challenged the assumption that families are invariable sources of support for cancer caregivers, noting that relationships with family members can have both positive and negative effects on caregiver well-being. This study expands upon prior literature to examine the relationship between cancer caregivers’ perceptions of the quality of their family interactions and their symptoms of anxiety.

We employed secondary analysis of baseline data from a multisite randomized clinical trial of an intervention for cancer caregivers conducted at 3 large academic palliative care clinics. We performed linear regression analyses to analyze the relationship between caregivers’ perceptions of the quality of their family interactions and their symptoms of anxiety; additional models were estimated to further characterize this relationship with the addition of relevant covariates: race, ethnicity, sex, marital/relationship status, relationship to patient, employment status, household income, and perceived social support received from friends and significant others. We also conducted a sub-analysis of data provided by caregivers who were married or partnered to examine the relationship between their perceptions of the quality of their family interactions and their symptoms of anxiety with relationship satisfaction as a covariate.

Among our analytic sample (n = 244), we identified a significant negative relationship between cancer caregivers’ perceptions of the quality of their family interactions and their symptoms of anxiety; this relationship remained statistically significant with the addition of covariates. Relationship satisfaction was not found to be a statistically significant covariate in our sub-analysis of married or partnered caregivers.

Study results provide strong support for the development, testing, and implementation of interventions to improve family interactions as a strategy to reduce caregiver anxiety.

People with advanced cancer express the need for support to balance everyday activities to experience quality of life. The Balance, Activity and Quality of Life Intervention was developed to address this need using a resource- and activity-oriented approach that integrates rehabilitation into palliative care. To inform a future full-scale evaluation, the objective of this feasibility study was to test if the selected outcome measures of health-related quality of life, including physical function and fatigue, and occupational balance could capture any possible changes of the Balance, Activity and Quality of Life Intervention in people with advanced cancer.

Repeated-measurement feasibility study without a control group (ClinicalTrials.gov NCT04772690). Twenty-two home-living adults with advanced cancer participated in the study. The intervention was delivered at the research clinic of REPHA, The Danish Knowledge Centre for Rehabilitation and Palliative Care. Data regarding health-related quality of life, including physical function and fatigue, and occupational balance were collected with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 and the Occupational Balance Questionnaire at baseline, after a 5-day intervention stay and at 6- and 12-week follow-up.

The outcome measure of health-related quality of life captured a statistically significant improvement (p = 0.0046) after the 5-day intervention stay, with 64% of the participants experiencing clinically relevant improvements. No other statistically significant changes were found. Missing data were minor.

Health-related quality of life is a promising outcome measure to capture the possible changes of the Balance, Activity and Quality of Life Intervention. The results indicate that a resource- and activity-oriented approach may be helpful when integrating rehabilitation into palliative care.

Coping-Together is a self-directed, self-management intervention initially developed for patients in early-stages of cancer and their caregivers. This study evaluated its acceptability among patients with advanced cancer and their caregivers.

Twenty-six participants (patients with advanced cancer n = 15 and their caregivers n = 11) were given the Coping-Together materials (6 booklets and a workbook) for 7 weeks. Participants were interviewed twice during this time to solicit feedback on the intervention’s content, design, and recommended changes. Audio-recorded interviews were transcribed verbatim, and thematic analysis was conducted.

Participants found Coping-Together was mostly relevant. All (n = 26, 100%) participants expressed interest and a desire to improve their self-management skills. Perceived benefits included learning to develop SMARTTER (specific, measurable, attainable, relevant, timely, and done together) self-management plans, normalizing challenges, and enhancing communication within the dyad and with their healthcare team. Most (n = 25, 96%) identified strategies from the booklets that benefited them. Top strategies learned were skills to manage physical health (n = 20, 77%) (e.g., monitoring symptoms), emotional well-being (n = 21, 81%) (e.g., reducing stress by reframing thoughts), as well as social well-being (n = 24, 92%) (e.g., communicating with their healthcare team). Barriers included illness severity and time constraints. The unique advanced cancer needs that are to be integrated include support related to fear of death, uncertainty, palliative care and advanced care planning. Suggested modifications involved enhancing accessibility and including more advanced cancer information (e.g., end-of-life planning, comfort care, resources).

Participants reported several benefits from using Coping-Together, with minimal adaptations needed. Creating SMARTTER self-management plans helped them implement self-management strategies. Specific areas for improvement addressed the need for improved accessibility and more content related to advanced cancer. Findings demonstrate how Coping-Together is acceptable for those living with advanced cancer and their caregivers, offering much of the support needed to enhance day-to-day quality of life.

Healthcare provider self-disclosures are common although sometimes controversial. Providers have unique opportunities to self-disclose for the purpose of conveying empathic concern during Dignity Therapy sessions. We examine the topics of empathic self-disclosures (ESDs) during Dignity Therapy sessions.

We analyzed 203 audio-recorded, transcribed Dignity Therapy sessions from a stepped-wedge, randomized trial of Dignity Therapy led by 14 nurses and chaplains in outpatient palliative care. We extracted 117 ESDs across sessions and applied thematic analysis guided by the constant comparative method to generate ESD topic themes and properties.

Providers disclosed ESDs referring to topics of Relationships and Family, Personal Experiences and Characteristics, Cohort Communalities, Location and Geography, and Values. Though each provider led multiple Dignity Therapy sessions in this dataset, providers rarely disclosed the same information to more than one patient. Some disclosures subtly shifted the patient’s life review. Providers often acknowledged patients that their self-disclosures were not prescribed elements of Dignity Therapy sessions.

Providers engage in ESD across a range of personal topics in a Dignity Therapy context. Some ESD topics overlapped with those considered appropriate in existing health communication literature. Other topics involved complex or underexamined types of disclosures. While self-disclosures appear to be made with empathic intent, providers undermined the impact of some ESDs by portraying them as unprescribed components of the conversation. More research is needed to assess the positive and negative impacts of ESDs during Dignity Therapy and to support augmentation of Dignity Therapy training protocols to account for providers’ ESDs.

Parents’ experiences of loss and grief in the context of caring for a child with life-limiting severe neurological conditions are complex. Supportive interventions delivered by multidisciplinary teams have the potential to mitigate illness-related and anticipatory grief before and after bereavement. To date, the literature on professionals’ discussion of loss and grief with parents has not been synthesized. This systematic review aims to synthesize the evidence to establish what is known about professionals’ experience of these discussions with this population, with particular emphasis on timing, frequency, and the setting in which discussions occur.

A scoping review was developed, informed by the Preferred Reporting Items for Systematic Reviews and Meta analyses – Scoping Extension guidelines and the PCC (Population, Concept, Context) framework. Three electronic databases (PsycINFO, CINAHL, and PubMED) were searched using medical subject heading (MeSH) terms and keywords search strings in January 2023. The search was not limited to year of publication. Overall, 35 articles were analyzed using a combination of descriptive analysis and thematic synthesis.

Two overarching themes were identified, “loss and grief are part of this context” and “lack of recognition of loss and grief,” illustrating that despite the lack of evidence of explicit discussion of these issues, some aspects of loss and grief appeared to guide or implicitly influence healthcare professionals’ practice. Failure to acknowledge loss and grief was associated with an increase in parental distress and had implications for future care planning.

Healthcare professionals are well placed to discuss loss and grief with parents of children with life-limiting severe neurological conditions. However, these discussions are only implicitly reported in the literature. Findings suggest that some professionals avoided discussing loss and grief. Bereavement outcomes are not typically considered in findings of the papers reviewed. Based on these findings, future research should focus on what this means for understanding professionals’ capacity to engage with loss and grief.

Head and neck cancer (HNC) often requires complex management and care. While the primary goal of treatment is curative, some advanced cases require consideration of non-curative pathways to optimize patients’ quality of life (QOL) and survival. This narrative review describes important aspects of palliative care and highlights strategies for employing these non-curative options in HNC.

We identified peer-reviewed articles on the state of palliative care in HNC and its implementation. We searched for articles using terms including “palliative care,” “non-curative care,” “comfort care,” “head and neck cancer,” and “head and neck squamous cell carcinoma.”

HNC is associated with a high disease burden; patients report high levels of pain, and both disease and treatment often compromise ability to carry out activities of daily living. There exist several non-curative routes of treatment, including palliation of symptoms, acute end-of-life (EOL) care, and hospice and home care. These care options provide comfort and optimize QOL of patients. Unfortunately, non-curative care could be misconstrued as withdrawal of treatment, or the provider team “giving up” on patient; these misconception can discourage patients from embracing palliative measures designed to alleviate symptom burden. Proper physician–patient communication, normalization, and early incorporation of these non-curative strategies into mainstream treatment could potentially ease patient concerns, and, eventually in EOL cases, help patients achieve dignified deaths.

Patients with HNC have unique palliative care needs due to their complex treatment and symptom burden. Early incorporation of non-curative plans such as palliative care alongside active treatment could help reduce symptom burden. Clinicians should strive to build trusting relationships with patients with HNC and effectively communicate with them about palliative care options. Guidelines that include such recommendations can help physicians regularly introduce palliation into the realm of active HNC treatment for advanced/incurable disease.

Sleep problems are common in palliative care patients. In addition, psychological problems can affect sleep quality. The aim of this study was to investigate sleep quality, anxiety, and depression in palliative care patients.

The study was conducted between May 1, 2023 and October 31, 2023 in Turkey. The patient information form, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS) were used to collect data. The data were analyzed using the Pearson correlation and multiple linear regression test.

A total of 59.3% of patients were male, 76.7% were married, 89.3% had poor sleep quality, 61.3% had anxiety, and 86.7% were at risk of depression. A positive moderate correlation was found between HADS-anxiety, HADS-depression, and HADS total with subjective sleep quality. A positive moderate correlation was found between HADS-anxiety, HADS depression, and HADS total with the PSQI total. Sleep latency, sleep duration, sleep disturbances, use of sleep medication, and daytime dysfunction showed a weak positive correlation with HADS-depression and HADS total. In the regression analysis, anxiety proved to be a statistically significant predictor of sleep quality, while depression was not a significant predictor. These variables were found to explain 22% of the total variance in sleep quality.

The patients’ sleep quality was poor. Anxiety and the risk of depression were high. A positive moderate correlation was found between the total score of sleep quality and anxiety and depression. Anxiety was found to be a statistically significant predictor of sleep quality.

Dignity is perceived as being valued and respected. Maintaining dignity throughout illness is a fundamental principle of palliative care. Dignity can be influenced through family caregiver’s communication, support, and acts of empathy or indifference among other factors. The perception of dignity and the practices adopted by family caregivers to preserve the dignity of their ill relative with serious illness in Lebanon are explored in this paper.

This is a part of a larger study that explored the understanding of dignity from patients’ and family caregivers’ perspectives in a palliative care context. Data collection involved in-depth interviews with 15 family caregivers. Interviews were analyzed using reflective thematic analysis.

Four main themes, that explained how family caregivers understand, and uphold their relative’s dignity during illness, were developed:

(a) Familial duty expressed through presence and compassion;

(b) Holistic care and financial stability;

(c) Social connection and family roles;

(d) Compassionate services and communication.

Family caregivers maintained the dignity of their ill relatives through being there, compassionate communication, supporting the personal and medical needs of the patient, and helping them preserve their family role. Family caregiving was often underpinned by religious values and a sense of duty. Compassionate services and effective communication were essential to preserve dignity of the ill relative during hospitalizations.

Family caregivers assume multiple roles in fostering the dignity of relatives with serious illnesses. It is crucial that family caregivers are supported by policies, healthcare systems, and community initiatives as patients cannot thrive nor sustain dignity without their support.