Narrative-based approaches have been utilized in medicine to better understand the illness experiences of individuals living with chronic conditions. In particular, people with amyotrophic lateral sclerosis (pALS) may benefit from use of narrative-based approaches, given the potential impact of progressive decline on identity of self. This review explores the use of narrative-based approaches in studies involving pALS to provide further insight to the experiences and psychosocial needs of this population.

A search was conducted utilizing EMBASE, CINAHL, PsycInfo, and Google Scholar with several terms related to amyotrophic lateral sclerosis (ALS) and narrative-based approaches. Studies were included if they were written in English, incorporated methods that promoted the production of narratives, and reported data that could be clearly isolated to pALS.

The search revealed a total of 154 articles for title and abstract screening. Fifty-two articles were selected for full-text review. Thirty-two articles met the criteria for data extraction. Four descriptive categories emerged upon examination of the narrative-based approaches implemented across the studies: psychosocial intervention, illness experience, intervention targeting specific needs, and secondary analysis of data. Some of the common themes identified across studies included: loss of physical and communicative function, adaptation to life changes, shifts in identity, and tension with the healthcare system.

Despite the communication challenges that often coincide with disease progression, narrative-based approaches can be utilized in pALS. These approaches should be implemented to gain insight on the disease experiences of pALS, providing opportunity for patient-centered interventions to address the psychosocial needs of this population.

Palliative and end-of-life (EOL) care is gaining increasing importance in Saudi Arabia due to the rising burden of chronic and life-limiting illnesses. Nurses play a central role in delivering comprehensive, culturally appropriate palliative care; however, their practices are influenced by educational preparation, institutional support, and sociocultural and religious contexts. To date, evidence on palliative nursing care in Saudi Arabia remains fragmented and insufficiently synthesized.

This systematic review aimed to synthesize existing evidence on palliative and EOL nursing care in Saudi Arabia, with a focus on nursing practices, challenges, cultural and spiritual influences, and patient and family outcomes.

A systematic literature search was conducted in January 2025 using PubMed, Scopus, CINAHL, Web of Science, Google Scholar, and Saudi grey literature sources. Empirical qualitative, quantitative, and mixed-methods studies addressing palliative or EOL nursing care in Saudi Arabia were included. Study selection followed PRISMA guidelines, and methodological quality was appraised using appropriate critical appraisal tools. A narrative thematic synthesis was undertaken due to heterogeneity among studies.

Fourteen studies met the inclusion criteria. Findings indicated that nurses are actively involved in symptom management, therapeutic communication, psychosocial support, spiritual care, and family-centered care. However, substantial barriers were identified, including gaps in knowledge and training, limited formal palliative education, emotional burden, ethical challenges related to nondisclosure, and inconsistent institutional policies. Cultural and religious norms strongly influenced communication practices and decision-making processes. Studies also showed that structured palliative care services, particularly home-based and multidisciplinary programs, were associated with improved patient comfort, dignity, and family satisfaction, although access to such services varied across regions.

Palliative and EOL nursing care in Saudi Arabia demonstrates commitment and potential but is constrained by educational, emotional, cultural, and systemic challenges. Strengthening nursing education, enhancing culturally sensitive communication and spiritual care training, expanding home-based palliative services, and providing institutional support for nurses’ emotional well-being are essential to improving the quality and equity of palliative care nationwide.

This qualitative study sought to explore the unique experiences of children receiving hematopoietic stem cell transplant (HCT) and their caregivers, with a primary focus on the multifaceted aspects of adherence following discharge.

Convenience sampling was used to enroll 14 caregivers and 15 children at a large Midwestern children’s hospital. Children had an allogenic HCT for a malignant or nonmalignant disorder and were 1–12 months off immunosuppression. Participants completed a semi-structured interview in the HCT-clinic or via phone about the child’s experience taking medications and adhering to post-transplant guidelines.

Caregivers were primarily female (n = 13, 87%), White (n = 11, 73%), and not Hispanic (n = 15, 100%). Children were primarily male (n = 9, 60%), White (n = 10, 67%; missing: n = 3), and not Hispanic (n = 13, 87%; missing: n = 2). Children’s average age was 13.14 years (SD = 2.88). Two primary themes emerged from the interviews, (1) family navigation and self-management of post-HCT medications and restrictions with 3 subthemes highlighting structured routines, adaptations to life post-HCT, and experiences with daily restrictions and other aspects of care; (2) advice from families on navigating post-HCT care with 2 subthemes highlighting communication and strategies for maneuvering post-HCT treatment. Of note, half of caregivers (n = 7, 50%) reported the child was responsible for taking their medications, and 43% (n = 6) of children were responsible for knowing when to take their medications.

This study contributes a nuanced understanding of adherence in pediatric HCT, emphasizing the need for tailored interventions that transcend traditional medical frameworks and enable clear communication between families and the medical team. Findings underscore the importance of providers adopting a comprehensive and patient-centered approach. Healthcare providers should consider the psychosocial aspects of HCT, implement tailored family-centered strategies to optimize adherence, and prioritize comprehensive communication to improve outcomes.

Prolonged grief disorder (PGD) is a debilitating condition recently recognized to psychiatric diagnostic manuals. There is a pressing need for valid, reliable, and culturally adapted instruments that align with internationally established diagnostic criteria for the diagnosis of pathological grief, particularly for Latinx populations, who often face limited access to timely mental health services. This study aimed to translate, adapt, and validate the Mexican version of the PG-13-R scale.

We translated and then back-translated the original PG-13-R. The scale was reviewed by experts in psychometrics and cognitively debriefed with a Mexican sample. The study included 397 participants, consisting of: (1) Family members of patients who died from cancer and received supportive care from a patient navigation program at a public hospital in Mexico City (CDMX) and (2) Individuals from the broader community who were contacted via social media (X, Facebook). Participants completed an online survey that included sociodemographic data, the preliminary version of the PG-13-R, an assessment of depression (PHQ-9) and of anxiety (GAD-7). Internal consistency was analyzed using Cronbach’s alpha. A confirmatory factor analysis (CFA) was conducted to examine evidence of validity, along with a Pearson correlation analysis between PG-13-R scores and existing measures assessing related but distinct constructs (i.e., depression and anxiety).

CFA supported a 1-factor structure with good model fit after accounting for error covariance between related items. The Mexican PG-13-R demonstrated good internal consistency (Cronbach’s α = 0.89) and positive significant correlations with measures of depression and anxiety, providing evidence of score reliability and validity.

The adapted PG-13-R offers a culturally appropriate tool for assessing prolonged grief in Mexican Spanish-speaking populations, with potential for use in clinical and research settings. The use of the PG-13-R scale is recommended for clinical research and mental health care in the Mexican population.

This study aimed to investigate the mediating role of perceived stigma in the relationship between cancer-related symptoms and social relationships among cancer patients.

This cross-sectional descriptive study was conducted with 250 cancer patients undergoing chemotherapy in an oncology hospital in Ankara, Türkiye. Data were collected using a sociodemographic form, the Nightingale Symptom Assessment Scale, the Cataldo Lung Cancer Stigma Scale, and the Social Relationship Scale. Descriptive analyses, group comparisons, Pearson correlation, and mediation analysis were performed with SPSS v27.0 and DataTab web-based analysis platform.

The findings revealed significant positive correlations between cancer-related symptoms and perceived stigma (r = 0.51, p < .001), and negative correlations between both cancer-related symptoms and social relationships (r = −0.24, p < .001) and stigma and social relationships (r = −0.54, p < .001). The mediation analysis suggested that perceived stigma may play a mediating role in the relationship between cancer–related symptoms and social relationships, as indicated by a non–significant direct effect and a significant indirect effect. Cancer-related symptoms significantly predicted perceived stigma (B = 0.58, p < .001), and stigma was a significant predictor of decreased social relationship quality (B = −0.72, p < .001). The indirect effect of cancer-related symptoms on social relationships via stigma was statistically significant (B = −0.42, p < .001), while the direct effect was not (B = −0.27, p = .182).

Perceived stigma is a critical psychosocial factor that may mediate the adverse impact of cancer-related symptoms on social relationships in this study. Therefore, addressing stigma may play a crucial role in maintaining social functioning in cancer care.

In the Netherlands, around 750 children (0–21 year) die annually from potentially palliative conditions. The majority of these children reside at home, receiving care from hospital services and primary care. This study aims to examine general practice utilization for pediatric palliative care patients in the last 2 years of life.

A retrospective cohort study was performed using the routine healthcare database of the Julius General Practitioners’ Network. The main outcome for general practitioner (GP) utilization was the number of GP consultations for children in the last 3 months of life. Participants were included who were children (0–21 years), and deceased in the period 01-01-2013 to 31-12-2022 from an underlying chronic condition. Data were analyzed using descriptive statistics and tested for differences in provided care between children who died in hospital and who died at home.

Forty-eight children from 32 GP practices met inclusion criteria. Median age was 10.0 years (interquartile range [IQR] 1.5–17.1). Common diagnoses were oncological (29%), congenital (29%), and metabolic conditions (23%). Ninety-six percent of children had contact with their GP in the last 3 months (median 7 consultations, IQR 3.0–10.0), i.e. 26 children who died in hospital had median 3.5 GP consultations compared to 20 children who died at home median 9.5 GP consultations (p < 0.001). Thirty-five percent of children were documented as being palliative, with 54% having some form of advance care planning discussions documented.

These results demonstrate that GPs are highly involved in providing pediatric palliative care. The palliative nature of these children and advance care planning discussions are not routinely documented and/or performed by GPs. Further insights into guidance that supports GPs, in collaboration with other healthcare professionals, in providing palliative care for children at home and their families are needed.

This study aimed to culturally adapt the Self-Blame Attributions for Cancer Scale (SBAC) into Turkish and evaluate its psychometric properties, including validity and reliability.

This methodological study enrolled 161 patients from both inpatient and outpatient oncology departments of a university hospital during a 1-year observation period (March 2024–March 2025). Participant data were obtained by using 2 instruments: a demographic questionnaire and the adapted Turkish version of “the SBAC.”

Confirmatory factor analysis revealed strong factor loadings ranging from 0.670 to 0.850, indicating good item reliability. Model fit statistics demonstrated excellent psychometric properties (χ2/df = 2.00; root mean square error of approximation = 0.079; Comparative Fit Index = 0.99; standardized root mean square residual = 0.042; Tucker–Lewis Index = 0.98; root mean square residual = 0.042). The scale showed high internal consistency, with a total Cronbach’s α of 0.93 and subscale α coefficients ranging from 0.85 to 0.90. The original 2-factor structure of the SBAC was supported.

The study confirmed the bidimensional structure (11 items) of SBAC’s Turkish version with excellent validity and reliability indices, supporting its cultural and psychometric adequacy for Turkish samples.

This study aimed to translate the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC) into Turkish and to examine its psychometric properties.

After completing the necessary translation stages, 190 participants (109 women and 81 men) with a mean age of 43.63 years (SD = 11.83), who provided care to individuals requiring palliative care, were recruited using convenience sampling. Participants completed the Sociodemographic Information Form, FACQ-PC, Burden Interview, Positive and Negative Affect Scale, and Palliative Performance Scale. Subsequently, reliability and validity analyses were conducted on the collected data.

Reliability analyses included internal consistency coefficients and test–retest reliability. Cronbach’s alpha coefficients were 0.88 for the negative outcome’s subscale, 0.90 for the positive caregiving appraisal subscale, and 0.82 for the family well-being subscale. Pearson’s correlation coefficients for test–retest reliability were 0.95, 0.87, and 0.94 for the negative outcomes, positive caregiving appraisal, and family well-being subscales, respectively. Validity analyses revealed a 3-factor structure similar to that of the Polish version but different from that of the original version. Based on factor loadings, two items were removed from the scale, resulting in a final 23-item version. Examination of the factor loadings revealed that these 2 items did not load onto any factor.

The reliability and validity analyses indicated that the Turkish version is a reliable and valid measurement tool for research and clinical applications. This tool is recommended for addressing the challenges faced by primary care physicians, health-care professionals working in home health and palliative care units, as well as family members and relatives who provide palliative care to patients.

Palliative psychiatry is an approach that aims to prevent and/or alleviate suffering and improve the quality of life of patients and their families through timely assessment and treatment when faced with physical, psychological, social, and spiritual problems associated with serious life-threatening mental illness. However, the need for psychiatric palliative care for individuals with serious mental illness has remained in the background and only became possible in the early 21st century. Therefore, it is essential that nurses, one of the most important actors of patient-centered care, assume the responsibility of providing palliative psychiatric care as a requirement of their patient advocacy role. The aim of this study was to determine the perception of palliative psychiatric care by psychiatric nurses in a country where palliative psychiatry has not yet emerged.

A study in qualitative descriptive design with semi-structured interviews. Fifteen psychiatric nurses participated in individual interviews. The data were analyzed using thematic analysis.

Four themes (Perception of palliative psychiatric care, Palliative psychiatric care practices, Barriers to palliative psychiatric care, and Recommendations for providing palliative psychiatric care) and 14 sub-themes were identified.

Psychiatric nurses are not familiar with the concept of palliative psychiatric care and associate it with holistic and individualized care. Nurses stated that palliative psychiatric care targets serious psychiatric disorders, treatment-resistant conditions, comorbidities and end-of-life care. In order to overcome barriers to palliative psychiatric care, suggestions were made for reorganizing the health system, establishing palliative care centers, training professionals in this field, and efforts to combat stigma.

The use of telehealth in palliative care has expanded rapidly, offering opportunities to enhance symptom management and provide psychosocial support to patients and families. Nurse-led virtual interventions play a critical role in improving access to care, particularly for those facing geographic or logistical barriers.

To systematically synthesize global evidence on the effectiveness of tele-palliative nursing interventions in improving symptom management and family support for adults with life-limiting illnesses.

This study was conducted as a hybrid umbrella review in accordance with PRISMA 2020 guidelines. Six databases and two trial registries were searched through September 2025. Eligible evidence included (a) systematic reviews, scoping reviews, integrative reviews, and mixed-methods reviews, and (b) primary studies such as randomized controlled trials (RCTs), quasi-experiments, observational studies, and pilot/feasibility studies. Systematic reviews were appraised using AMSTAR-2; primary studies using RoB 2, ROBINS-I, or CASP, as appropriate. A narrative synthesis was employed, with review-level evidence prioritized and primary studies used to contextualize effect directions. Potential overlap of primary studies across included reviews was assessed conceptually to avoid double counting. This approach was selected to integrate both review-level and primary evidence within a unified synthesis framework.

Twenty-eight studies (≈2,500 participants from primary studies only) from North America, Europe, Asia, and Australia were included. Interventions included video consultations, structured telephone follow-ups, remote symptom monitoring, and caregiver education programs delivered by nurses. Across studies, nurse-led telehealth interventions were associated with improvements in access to care, symptom monitoring, patient satisfaction, and aspects of family support. Evidence for symptom severity reduction and caregiver burden was mixed, with moderate heterogeneity. Risk of bias was generally low to moderate, with RCTs offering the strongest evidence.

Tele-palliative nursing is a promising model for delivering symptom management and family support remotely. It demonstrates feasibility and acceptability across diverse settings. However, findings should be interpreted cautiously due to heterogeneity in study designs, reliance on secondary evidence, and variable methodological quality. Further large-scale trials with standardized outcome measures are needed to strengthen the evidence base.

The effective integration of palliative care along the hospital–home trajectory remains a challenge, with digital technologies representing a promising strategy to improve continuity and coordination of care. This study aimed to validate, through expert consensus, the objectives, functionalities, clinical content, organizational requirements, and barriers and facilitators of a technological resource to support the integration of palliative care from hospital to home.

A methodological consensus study using a modified Delphi technique was conducted over two rounds. A multidisciplinary panel of experts with experience in palliative care, digital health, and healthcare organization participated. In the first round, experts evaluated an initial set of items derived from the literature and clinical practice. Items were analyzed for consensus and, based on qualitative comments, linguistically refined. In the second round, experts reassessed the items to confirm consensus and evaluate the stability of responses. A 4-point Likert scale was used. Consensus was defined as ≥75% of responses indicating “Agree” or “Strongly agree,” with calculation of the Item Content Validity Index (I-CVI) and the coefficient of variation.

Thirty-three experts participated in both rounds, corresponding to a 100% retention rate. All items reached consensus in the first round and maintained consensus and high stability in the second round. Agreement levels were high across all domains, with I-CVI values ≥0.78 and coefficients of variation below 0.25, confirming the content validity of the final set of items. No items were excluded throughout the Delphi process.

This study validated a comprehensive and structured set of essential components for the development of a technological resource to support the integration of palliative care from hospital to home. The high levels of consensus and stability achieved support the clinical and organizational relevance of the resource, providing a solid foundation for its development, implementation, and future evaluation.

Early integration of pediatric palliative care (PPC) offers significant benefits for children with cancer, yet referrals often occur late in the child’s cancer trajectory.

As part of a larger project looking at barriers and facilitators to early integration of PPC, this study explored the perspectives of healthcare providers (HCPs) on the pros and cons of a universal referral system where all children with cancer are referred to PPC at diagnosis.

Using the grounded theory method, semi-structured interviews were conducted with 66 oncology and PPC providers across 4 tertiary cancer centers in Canada. Interviews were coded line-by-line to explore patterns and themes across the dataset.

Three key benefits emerged that included: reducing stigma and normalizing PPC as standard care, fostering early relationship building with patients and families, and minimizing HCP subjectivity in making PPC referrals. Cons included the idea that universal referral was a poor use of resources, particularly for children with curable cancers, and that this system lacked usefulness for patients and families.

Universal referral can promote equitable, timely, and family-centered integration of PPC in pediatric oncology. However, these types of referral systems face substantial challenges, particularly around resources. There was also wide variation of opinions and acceptability of universal referral among providers. The adoption of standardized or tiered referral criteria, guided by disease risk, prognosis, or symptom burden, may represent a practical middle ground. Future work should evaluate the impact of such criteria-based referral models on patient and family outcomes, provider experiences, and healthcare resource use.

Spiritual care is a core element of palliative care, addressing religious, spiritual and existential concerns and enhancing quality of life. In Finland, systematic assessment of patients’ spiritual needs is limited due to the lack of a validated instrument. This study aimed to develop and psychometrically validate the Spiritual Needs in Palliative Care (SNPC) questionnaire for Finnish palliative care patients.

A prospective, multi-phase validation study, included item generation, expert review, pilot testing, and psychometric evaluation. Content and construct validity, as internal consistency and Cronbach’s alpha values were assessed using explorative factor analysis (EFA). For convergent and divergent, validity Pearson’s correlations were calculated for Edmonton Symptom Scale (ESAS), WHO Performance Status Scale, and the Spiritual Well-being Questionnaire (EORTC QLQ-SWB32).

The SNPC included 28 items covering existential, emotional, religious, and spiritual distress domains, with sections for importance and fulfillment of each need. A total of 116 patients (mean age 71 years; 61.2% female; 88.8% with cancer)), were recruited from 10 oncology and palliative care units across Finland. EFA supported an 8-factor structure – Communication and Preparation for Death; Meaning and Continuity; Emotional and Inner Peace; Artistic and Quiet Comfort; Religious Needs; Ritual Participation; Freedom from Guilt and Shame; Fear and Survival – explaining 71% of variance, with good reliability (Cronbach’s α = 0.63–0.93). The most important needs were safety in care, peace of mind, and participation in care decisions, while religious rituals and visits by clergy were less important. Significant gaps emerged between perceived importance and fulfilment of needs, regarding being heard, hope, peace, and the presence of loved ones. Fulfilled spiritual needs correlated well with SWB32 but not with ESAS.

The SNPC is a valid and reliable instrument for assessing the spiritual needs of Finnish palliative care patients. It could support systematic identification of unmet spiritual needs of palliative care patients.

In this study, we aimed to elucidate the underlying structural mechanisms that generate a desire for hastened death (DHD) in patients with terminal cancer from a whole-person perspective based on insights from palliative-care professionals (PCPs).

We conducted semi-structured interviews with 36 PCPs experienced in caring for patients with terminal cancer and DHD, followed by a thematic analysis based on Boyatzis’ hybrid approach.

We identified 6 themes that characterize the underlying structural mechanisms of DHD. DHD arises from feelings such as loss of self-control, inability to escape adverse circumstances, confronting death and letting go of life, pain of loneliness, being unable to accept living life as it is, and feeling unable to live with the thought of being an inconvenience to others, in addition to physical and psychological pain. In contrast, certain patients who had built good relationships with family members and/or PCPs found new meaning and value in their current lives, expressing a desire to live in the moment and choosing to continue living until the end.

This study provides the first comprehensive analysis of the underlying structural mechanisms of DHD in patients with terminal cancer from a whole-person perspective. DHD with spiritual pain is linked to the loss of future orientation, autonomy, and meaningful relationships through interconnected structural pathways, leading to feelings of worthlessness and existential meaninglessness. The identified framework demonstrates that these underlying mechanisms operate through an interplay of existential, relational, and autonomy-related factors extending beyond physical and psychological symptoms, reflecting an interconnected human experience across physical, psychological, social, and spiritual dimensions. This study established an evidence-based framework enabling healthcare professionals to implement whole-person approaches to recognize the multidimensional nature of DHD and address existential distress across all dimensions of human experience in end-of-life care.