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To evaluate the impact of a tailored organizational intervention on the support for family caregivers.
Methods
A convergent mixed-methods study was conducted in 17 organizations (6 hospices, 5 home care organizations, 3 nursing homes, 2 hospitals, 1 transmural organization) between November 2021 and August 2023. The intervention comprised a structured practice improvement trajectory during which each organization conducted a structured workshop to define organization-specific goals to improve their support for family caregivers and to develop an action plan to achieve those goals. The action plan was implemented over 1 year with intermittent evaluations. Pre- and post-intervention surveys were distributed among healthcare professionals (paired) and bereaved family caregivers (non-paired) to assess provided and received support. Data were analyzed with mixed models and regression analyses. Post-intervention focus groups with project team members and final evaluation reports were analyzed with qualitative content analysis.
Results
Survey respondents were 97 healthcare professionals (83% nursing staff), 123 family caregivers pre-intervention, and 99 family caregivers post-intervention. Only healthcare professionals of home care organizations reported a significant increase in attending to family caregivers’ wellbeing and needs (scale 0–20; β = 3.65; 95%CI: 1.33–5.97). Family caregivers’ reports of healthcare professionals attending to their wellbeing and needs did not change (scale 0–2; β = 0.17; 95%CI: −0.04–0.38). Across settings, healthcare professionals evaluated the care they provided more positively post-intervention (scale 0–8; β = 0.65, 95%CI: 0.38–0.97). In home care, family caregivers also evaluated care more positively (scale 0–8; β = 2.12; 95%CI: 0.89–3.34). Four focus groups and 17 evaluation reports indicated improvements at 3 levels: the support for family caregivers (increased awareness of healthcare professionals, changes in work processes, more structured support), the healthcare team (more skills, confidence, available tools), and the organization (fostering sustainability).
Significance of results
A tailored organizational intervention can strengthen the support of family caregivers in healthcare organizations.
This study aimed to explore the end-of-life decision-making experiences of bereaved family caregivers of Alzheimer’s disease (AD) patients, focusing on do-not-resuscitate orders. Given the high emotional and ethical burden on caregivers, understanding their challenges and needs is crucial to enhancing palliative care for AD patients.
Methods
A qualitative, exploratory study was conducted using semi-structured interviews with 22 family caregivers recruited through purposive sampling in central Taiwan. Participants were primary caregivers for AD patients who had been bedridden for at least a year before death. Analysis employed inductive thematic coding to identify key themes, with rigor ensured through multiple coding, member checking, and reflective journaling.
Results
Three major themes emerged: (1) Decision-making difficulties, where caregivers felt pressure and conflict when making urgent decisions; (2) Willingness to let go, which involved accepting the inevitability of death when recovery was no longer possible; and (3) Embracing the consequences of the decision, reflecting caregivers’ sense of relief and acceptance post-decision. Cultural factors, such as filial piety, were found to influence decision-making processes, often intensifying emotional conflicts.
Conclusions
Findings underscore the importance of early, culturally sensitive discussions around end-of-life care in palliative settings for AD patients. Healthcare providers are encouraged to initiate these discussions, offering clear explanations and emotional support to assist caregivers through decision-making. This study highlights the need for a family-centered approach that respects cultural nuances, helping to reduce caregiver stress and enhance the quality of palliative care in AD contexts.
To determine associations between spiritual well-being (faith and meaning dimensions) with emotional suffering (anxiety, depression, hopelessness, and quality of life) in Latinos with advanced cancer and examine themes of existential coping.
Design
In a mixed-methods study, participants were recruited from cancer clinics in New York and Puerto Rico. Measures included the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being Scale, the Hospital Anxiety and Depression Scale, and the Beck Hopelessness Scale. A subset of participants completed in-depth semi-structured interviews exploring the roles of existential and religious factors in adjustment to cancer. Correlations were conducted, and the interviews were analyzed with a thematic analysis approach.
Results
A sample of 142 Latinos with advanced cancer participated (67.6% stage IV and 32.4% stage III). The spiritual well-being, faith and meaning factor were associated with anxiety and depression symptoms. Meaning was associated with lower hopelessness and showed stronger associations with emotional suffering than the faith dimension. Lower acculturation was associated with higher hopelessness but not with depression/anxiety. In semi-structured interviews (n = 24), recurrent themes were: (1) receiving existential support from counselors; (2) receiving spiritual support from family and/or friends; (3) focusing on being spiritual and finding purpose rather than on a specific religion or faith; (4) religious coping; and (5) spiritual coping, focused on self-growth, finding meaning, and helping others to cope. Patients identified sources of meaning, including helping others, having a fighting spirit, a spirit of learning, enjoying work, enjoying life, family and children, confidence in providers/treatment, God/faith, and spirituality.
Significance of results
Meaning had a more significant influence than faith on emotional suffering. Participants emphasized the importance of finding meaning and purpose, self-growth, and helping others as ways to cope with an advanced diagnosis. Interventions with a meaning-making approach, emphasizing finding purpose and growth, are needed for Latinos with advanced cancer.
To describe and assess the overall results of the La Caixa Foundation and the ICO/UVIC Chair of Palliative Care (Former WHO Collaborating Centre) Program “Comprehensive Care of People with Advanced Chronic Conditions” at 15 years (2008–2023).
Methods
We used qualitative and quantitative methods, such as prospective, quasi-experimental, and pre-post test designs, to evaluate the effectiveness of the interventions led by psychosocial teams providing support to existing healthcare services. Data were collected from the Program’s unique shared online information system, retrieving output and outcomes information, including data obtained from validated psychosocial evaluation instruments and semi-structured interviews with patients, relatives, professionals and other stakeholders, focusing on effectiveness, satisfaction, and perceived quality of different aspects of the Program, as well as outputs.
Results
From 2008 to 2022, the Program implemented 65 teams in Spain and 11 in Portugal across all the provinces, with 379 full-time professionals. They saw 286,644 patients and 371,023 relatives, with a median intervention duration of 2.3 weeks. Patients’ mean (SD) age was 73.2 (14.9) years; 52.3% were women, and most had a cancer diagnosis (60.1%). After 3 consecutive interventions, patients showed significantly improved psychosocial parameters, according to the Assessment of PSS Needs (ENP-E) and Existential Loneliness Detection Scale (EDSOL). Patients, relatives, and stakeholders were highly satisfied. The Program has developed a Master’s degree that has trained over 250 professionals and conducted 371 courses/workshops and 302 lectures. The Program developed tools, manuals, and protocols that were published, available, and common to all professionals involved. It also developed innovative approaches responding to special settings and needs.
Significance of results
A care program within a collaborative framework between public health services and non-profit foundations is an effective, efficient, and feasible model for organizing the psychosocial and spiritual dimension of care for patients with advanced chronic conditions and their relatives.
The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL) is designed to measure quality of life (QoL) in cancer patients receiving palliative care. The aim of this study was to translate and validate an Urdu version of the questionnaire, which was previously lacking.
Methods
Following formal approval from the EORTC, the QLQ-C15-PAL was translated into Urdu. Patients admitted under the palliative care service at a tertiary care center in Karachi, Pakistan, were enrolled in this cross-sectional study, and the Urdu QLQ-C15-PAL and the Edmonton Symptom Assessment Scale (ESAS) forms were administered. Performance status was assessed using the Palliative Performance Scale (PPS). Cronbach’s alpha and Pearson correlation coefficients were determined to gauge reliability and validity. Concurrent and known-group validity were tested using ESAS responses and PPS assessments.
Results
One hundred patients with varying primary cancer sites were included. Cronbach’s alpha for the overall questionnaire was 0.86 and was >0.8 for all subscales except fatigue, where it was 0.697. All correlations to indicate convergent validity had coefficients >0.8 and 87% of correlations between “unrelated” domains were weak, indicating discriminant validity. Known group validity was established and improved QoL was observed in the high PPS (>40) subgroup of patients across multiple domains. However, concurrent validity was not strongly established.
Significance of results
The Urdu QLQ-C15-PAL is a reliable and valid tool to measure QoL in cancer patients who speak Urdu. However, replication of our results in other settings is warranted.
To understand how the Go Wish Cards Game (GWCG) can support the expression of values, wishes, and preferences at the end of life among women living with advanced breast and/or gynecological cancer.
Methods
This descriptive qualitative study was conducted as part of a larger randomized clinical trial. Participants were recruited from a leading cancer center in Brazil and invited to sort the GWCG cards into three categories: “very important,” “somewhat important,” and “not important.” The 10 cards rated as “very important” were discussed individually to explore their meanings. At the end of the session, participants were asked: “What did it mean for you to play the cards?” Narratives associated with the “very important” cards were analyzed using content analysis based on Bardin’s methodological framework.
Results
Thirty-three women completed the GWCG. Participants described the game as a meaningful opportunity for reflection, communication, and expression of personal values and end-of-life wishes. Discussions of the “very important” cards elicited narratives focused on trust-based relationships, emotional and spiritual support, dignity, and relief from suffering. The most frequently selected cards included wishes such as “to have a doctor I trust and nurses who care about me” and “to have my family and friends with me,” reflecting shared priorities across narratives. Values and wishes were organized into three overarching dimensions: emotional and existential connections; dignity and autonomy; and care and comfort at the end of life. The GWCG was perceived as a valuable tool for facilitating the expression of biopsychosocial and spiritual values.
Significance of results
The findings indicate that the GWCG supports reflection and the articulation of end-of-life values, wishes, and priorities, particularly those related to dignity, autonomy, comfort, and emotional connection. The tool shows potential to promote meaningful conversations and care aligned with what gives purpose and meaning to women living with advanced cancer.
Acute Palliative and Supportive Care Units (APSCUs) provide unique and tailored care to patients with advanced chronic illness. In an APSCU, patients receive intensive palliative care while remaining in an acute care hospital setting. This allows for physical and psychological suffering to be aggressively treated by a dedicated interdisciplinary team. In the case of our patient, the APSCU changed the trajectory of his expected outcome of in-hospital death to a successful discharge home.
Methods
We report the case of a patient with advanced colon cancer who suffered cardiac arrest in the emergency department and was expected to die soon after transition to comfort-oriented care.
Results
After terminal extubation, our patient continued to have agitated delirium and was transferred to our APSCU for aggressive symptom control. He stabilized and progressively became more responsive, prompting a change in his plan of care with a goal of discharge home with hospice. The APSCU’s interdisciplinary team was able to adapt to the patient’s unexpected clinical improvement and provide him and his family with the medical, psychosocial, and spiritual expertise to prepare him for a successful discharge home, where he ultimately died 6 weeks later.
Significance of results
The case report demonstrates that an APSCU, with its skilled interdisciplinary team in the acute care hospital, is an ideal setting to provide patient-centered care for seriously ill patients and their families.
Patients with non-English language preference (NELP) face significant barriers to safe and effective communication in palliative and supportive care. These barriers compromise quality, delay care, and heighten the risk of unmet psychosocial needs, particularly when compounded by health literacy concerns and limited access to translated resources.
Methods
We describe two Spanish-speaking patients with advanced cancer whose inpatient and outpatient supportive care was complicated by language barriers, leading to communication gaps, including symptom misinterpretation and inadequate family discharge education. These factors contributed to significant distress and safety risks.
Results
Interdisciplinary interventions, including professional interpreter use, bilingual supportive care psychology, teach-back education, medication relabeling in Spanish, and culturally tailored communication, helped restore trust, alleviate suffering, and align care with patient and family values. In one case, a lack of validated Spanish versions of the Edmonton Symptom Assessment System within the electronic medical record (EMR) hindered symptom self-reporting and safety. Following multiple requests, the EMR team initiated development of a Spanish-language template to facilitate future integration.
Significance of the results
Structural gaps in language accessibility compound distress, reduce autonomy, and threaten safety. These cases underscore that interpreter services alone are insufficient. Integrating validated multilingual tools into EMRs, standardizing translated discharge instructions, and expanding access to in-person interpreters are critical steps toward equitable care. Institutionalizing linguistically responsive systems is essential for ensuring safety, equity, and dignity in palliative care for patients with NELP.
The importance of palliative care in cancer care is underscored, yet there is a significant gap in research specifically focusing on the role of social workers in palliative cancer care. This qualitative study aims to better articulate the specific roles of social workers within palliative oncology settings.
Methods
Data were collected by semi-structured Zoom interviews with social workers in palliative cancer care between November 2023 and January 2024. Thematic analysis was used to identify unique themes.
Results
Ten social workers in palliative cancer care were recruited for this study. Eight key themes related to social workers’ role emerged from the interviews. These were the following: (1) mapping out holistic needs through a biopsychosocial–spiritual assessment, (2) providing individual and family counseling, (3) patient and family psychoeducation, (4) resource identification and referral, (5) building communication bridges between patients, families, and oncology teams, (6) promoting patient and family engagement and voice in shared decision-making in cancer care, (7) providing anticipatory grief and bereavement counseling, and (8) strengthening team resilience and fostering well-being.
Significance of results
This study builds upon prior work by focusing specifically on the roles of palliative care social workers in oncology. The findings highlight the multifaceted roles of social workers, demonstrating their capacity to deliver holistic care to cancer patients, families, and healthcare providers to enhance quality of care. The findings may help inform the development of training curricula and practice standards for the subspecialty of oncology-focused palliative social work.
Zinc is a micronutrient essential for taste perception and may be prescribed for dysgeusia in cancer patients undergoing treatment. However, overconsumption of zinc can lead to copper deficiency, which is likely under-recognized and can present as fatigue, nausea, anemia, and myelopathy.
Case presentation
A patient in his 70s with multiple myeloma and gastroparesis taking zinc supplementation to treat dysgeusia for the past 2 years presented with generalized fatigue, lightheadedness, nausea, neutropenia, anemia, gait disturbance, and worsening numbness and tingling in the bilateral lower extremities and hands. He was found to have hypocupremia in the setting of prolonged zinc supplementation and admitted for inpatient treatment with IV cupric chloride. His symptoms gradually improved over the course of approximately 5–6 weeks.
Conclusions
Clinicians should be vigilant about screening for copper deficiency symptoms in patients taking zinc supplementation and avoid prolonged courses or overprescribing of zinc. Hypocupremia should be promptly diagnosed and treated to prevent permanent neurological deficits.
This qualitative study explored nurses’ experiences of facing death while caring for bedridden patients in palliative and long-term care settings. Nurses are the primary witnesses to the final phase of life, where technical competence and emotional endurance coexist. Understanding how nurses perceive death and how knowledge, time, and communication affect their caregiving can provide insights into improving end-of-life nursing practices.
Methods
The study was conducted with 70 primary nurse-caregivers of bedridden patients who were hospitalized in the palliative clinic of a university and an educational research hospital in Istanbul between April and August 2024. The research data were obtained through face-to-face interviews using a semi-structured interview form. The interviews were recorded on a voice recorder. The data obtained from the interviews were analysed thematically.
Results
Three main themes were identified: Deficits in Knowledge and Education, Time Management, and Communication and Coordination. Nurses expressed uncertainty and emotional tension when providing care for dying patients. Inadequate end-of-life education heightened their fear of making mistakes. Heavy workload and limited time constrained emotional presence at the bedside. Fragmented communication among healthcare professionals increased feelings of isolation and moral distress. Across these themes, nurses experienced a silent but persistent awareness of death that shaped their professional identity and coping strategies.
Significance of Results
Nurses caring for bedridden patients constantly face death, balancing medical duties with human vulnerability. Including death education, emotional support, and effective interdisciplinary communication in nursing practice can improve nurses’ resilience and the quality of end-of-life care.
Clinical pharmacists are increasingly recognized as essential members of multidisciplinary palliative care teams, yet their specific roles and impact have not been comprehensively summarized. This scoping review aimed to systematically map and synthesize published evidence on the clinical roles, interventions, and professional contributions of pharmacists within multidisciplinary palliative care services for patients with non-communicable diseases.
Methods
A scoping review was conducted by searching PubMed, Embase, Web of Science, and Scopus from January 2000 to May 2024. Eligible studies reported clinical pharmacist interventions in palliative care. Data were extracted on study characteristics, pharmacist activities, and clinical outcomes.
Results
Twelve studies were included, predominantly from the United States. Pharmacist-led interventions encompassed medication reconciliation (91.7%), symptom management (83.3%), adverse drug event prevention (75.0%), patient and caregiver education (58.3%), and policy-level contributions (33.3%). High physician acceptance rates (≥90%) were consistently reported. Outcomes included improved symptom control, reduced drug-related problems, and enhanced patient-reported quality of life.
Significance of results
This scoping review synthesizes current evidence on the roles of clinical pharmacists in palliative care teams. The findings highlight their essential contributions to medication safety, symptom management, deprescribing, and opioid stewardship, reinforcing the need for pharmacist integration into multidisciplinary palliative care models to improve patient-centered outcomes. Future research should focus on implementation models, cost-effectiveness analyses, and service expansion in community-based settings.
This study aims to adapt and validate a Spanish (Argentina) version of the Caregiver Indirect and Informal Care Cost Assessment Questionnaire (CIIQ) to enable the measurement of informal care-related costs in the Argentine context, addressing the current lack of Spanish-language tools for assessing indirect costs.
Method
The CIIQ was translated, cross-culturally adapted, and validated for the Spanish–Argentine language and culture. Psychometric properties were evaluated in a purposive sample of relatives of patients with advanced chronic disease and limited life expectancy in Argentina. Missing data and internal consistency (Cronbach’s α) were assessed, along with discriminant capacity, content, and construct validity. Construct validity was examined through principal component analysis (PCA) and confirmatory factor analysis (CFA).
Results
The translation and cultural adaptation process was completed without major difficulties. A total of 154 caregivers completed the baseline questionnaire and 90 completed the follow-up assessment, with missing data remaining below 10% across items. Internal consistency was high for the overall instrument (α = 0.802) and for the unpaid care cost domain (α = 0.866). The productivity loss domain showed moderate reliability (α = 0.362). Low correlations with unrelated domains (ρ < 0.2) supported adequate discriminant validity. PCA identified 2 components – informal care costs (51.5% of explained variance) and productivity loss costs (20.3%) – which were further supported by CFA.
Significance of results
The Spanish–Argentine version of the CIIQ is a reliable and culturally appropriate instrument for assessing the economic burden of informal care in Argentina. While the unpaid care items demonstrated strong psychometric performance, productivity-related items may require refinement to improve reliability in future applications.
Patients in the re-entry phase (that is, the first 18 months after curative cancer treatment) may use meaning-making to deal with existential concerns imposed by cancer and related changes in life. The purpose of the current study was to conduct a formative evaluation of an intervention aimed at supporting patients’ meaning-making process and motivating them to pick up life during the re-entry phase.
Methods
Patients were included after finishing systemic treatment for breast cancer or melanoma. The intervention comprised a single one-hour conversation guided by a spiritual counselor who explored patients’ sources of meaning, in order to support them in dealing with existential concerns and changes in life in the re-entry phase. The evaluation included semi-structured interviews concerning the intervention and questionnaires assessing mental adjustment to cancer, psycho-spiritual wellbeing and meaning in life.
Results
Qualitative interviews with 14 participants demonstrated an overall positive experience and appreciation of the intervention. Patients reported several benefits: reflection on existential concerns and sources of meaning, validation of sources of meaning, insights regarding the use of sources of meaning, and motivation to pick up life; and to a lesser extent: prioritizing, identifying meaningful goals, or undertaking specific action. Patients made suggestions on how to tailor the intervention more to their needs. Quantitative data showed increases on the subscales autonomy, goal-orientedness, and fairness of life with small effect sizes.
Significance of the results
This study showed that an intervention to support patients with breast cancer or melanoma in the process of meaning-making in the re-entry phase after systemic treatment was positively experienced and well appreciated. It supported meaning-making, particularly through reflection on, validation and utilization of sources of meaning, and supporting motivation to pick up life. The results of the current study can be used to optimize the intervention, which can be further evaluated in a multicenter study.