Amyotrophic lateral sclerosis (ALS) is a rare, progressive, and fatal disease that impacts the lives of affected individuals and their caregivers. Informal caregivers play a crucial role in supporting people with ALS (pwALS), yet they face major challenges. This study aims to analyze caregiver burden and health status among informal caregivers of pwALS in Portugal.

A cross-sectional survey-based study was conducted with adult informal caregivers of pwALS in Portugal, recruited through the Portuguese ALS patient association and healthcare professionals. Data included sociodemographics, caregiving activities, caregiver health (SF-36), patient functional status (ALSFRS-R), and caregiver burden (ZBI).

The study included 113 caregivers. Most were female (61.9%) and the partner (65.5%) or offspring (23.9%) of the pwALS. A quarter of caregivers received no social benefits. Mean ZBI was 32 ± 14.8, with most reporting mild to moderate burden. On the SF-36, general health was 51.1 ± 19.8, with mental health (55 [40; 70]) and vitality (43.8 [31.3; 56.3]) particularly impaired. ZBI scores correlated positively with caregiving hours (r = 0.274, p = 0.003) and negatively with ALSFRS-R (r = −0.411, p < 0.001). High burden caregivers exhibited poorer sleep quality (p =  0.026).

Caregivers experienced mild to moderate burden, with impaired mental health and vitality, but preserved physical functioning. A higher burden was linked with lower quality of life, poorer sleep, and greater patient disability. These findings underline the need for targeted education and training to support caregivers of pwALS.

Previous studies indicate that African immigrant women in the United States have lower rates of cervical cancer screening and prevention than other racial and immigrant groups, with additional heterogeneity by country of origin, language proficiency, and length of U.S. residence.

This review aimed to (a) summarize barriers and facilitators to screening, (b) examine how existing studies conceptualize African immigrant identity and employ disaggregated analyses, and (c) apply intersectionality and stress process frameworks to highlight structural determinants shaping screening behaviors.

This systematic review, registered with PROSPERO (CRD420251151600), synthesizes evidence on cervical cancer screening and HPV vaccination among African immigrant women in the United States. PubMed, ProQuest, EBSCO, PsycINFO, MEDLINE, Scopus, and Google Scholar were searched for peer-reviewed studies published between January 2010 and December 2024. Seventeen studies met inclusion criteria, including cross-sectional surveys (n = 7), qualitative studies (n = 5), mixed-methods studies (n = 3), retrospective cohort analyses (n = 1), and one randomized controlled trial.

Only 11 of the 17 studies disaggregated African immigrant women by country of origin or related subgroup characteristics. Risk of bias was assessed using the Newcastle–Ottawa Scale for observational studies and the Critical Appraisal Skills Programme checklist for qualitative studies. Across studies, African immigrant women consistently faced barriers to screening, including language discordance, lack of insurance, limited HPV awareness, cultural stigma, and unfamiliarity with the U.S. healthcare system. Interventions such as HPV self-sampling and culturally tailored education showed promise in improving screening uptake.

The findings point to the need for standardized disaggregated data collection, culturally responsive interventions, and theory-driven research to reduce cervical cancer prevention disparities among African immigrant women in the United States.

Withholding or withdrawing life-sustaining therapies (WLST) was introduced in France in 2005 through the Leonetti law to prevent futile treatments and “unreasonable obstinacy.” In France, WLST decisions affect 8.5–14% of ICU patients, according to the literature. The 2016 Claeys–Leonetti law updated the previous legislation, but debates surrounding end-of-life care persist.

To describe WLST patients and practices under current legislation, we conducted a multicenter, prospective, observational study in ICUs across Eastern France. Eligible adult patients facing WLST decisions were included, requiring written consent from the patient or a trusted person. Patients were followed for 1 month. We described the decision-making process and assessed family satisfaction using the FS-24R-ICU questionnaire.

Between May 3rd and October 3rd, 2023, 73 patients were included (mean age 69 years). The majority of admissions were medical (72.7%), and 50.7% of patients had neurological impairments. ICU staff initiated WLST discussions primarily due to poor survival or quality of life prospects. Only 12.5% of patients had written advance directives, and 59.1% had designated a trusted person. External consultation was not involved in 19.1% of decisions. Families were informed in 91.7% of cases. Decisions to withhold therapies occurred in 68.1% of cases, with resuscitation during cardiac arrest being the most commonly withheld intervention (98.0%). Treatment withdrawal occurred in 31.9% of cases. Family satisfaction was generally positive.

WLST management in Eastern French ICUs is partially compliant with the Claeys–Leonetti law. Improved law application and public awareness could enhance end-of-life care management in France.

To explore hospital healthcare professionals’ (HCPs) knowledge, attitudes, and experiences on advance care planning (ACP), comparing different professions and care specialties, in a country where ACP is formally regulated.

An online survey involving HCPs from different care specialties involved in ACP working in Italian hospitals. Different tests were used for comparisons among HCPs.

We included responses from 724 HCPs (259 physicians, 86 residents, 339 nurses, 40 physiotherapists). Despite only 29.7% of participants having received education on ACP, the majority (75.5%) had heard of ACP and were aware of its key elements. The main misconceptions concerned legal aspects, while uncertainty regarding ACP practical implementation and correct timing were among the main reported barriers. Virtually all participants favored ACP, and 81.1% considered ACP part of their duty, but ACP is seldom offered to patients and is not always documented. Knowledge and attitudes toward ACP were similar across professional roles, while ACP education and discussion varied across specializations, with the highest levels reported by Palliative Care HCPs. In most specialties, a substantial overlap can be noted between levels of ACP education and ACP discussion among all HCPs, while higher levels of discussion were generally observed among physicians, though the magnitude of the gap between education and discussion levels differed across care specialties.

Despite ad hoc regulation and HCPs’ favorable attitudes, the legal aspects of ACP remain poorly understood and ACP implementation in hospitals is still low. This study supports the need for clear procedures and for inclusion of ACP education and training in the core curricula of all HCPs, suggesting the need for studies integrating social sciences to explore specialty-specific barriers and facilitators to ACP. Due to their unique level of engagement in the process, palliative care HCPs may play a pivotal role in implementing hospital-based ACP.

Assessing the multidimensional nature of suffering in palliative care is challenging. The Suffering Pictogram (SP) is a visual instrument developed to facilitate the communication and measurement of this experience in clinical practice.

To translate, cross-culturally adapt, and validate the SP into Brazilian Portuguese (SP-BR) for cancer patients.

A sample of 222 cancer patients completed the SP-BR and the FACIT-Sp-12 scale. Psychometric properties were assessed using exploratory factor analysis (EFA), internal consistency (Cronbach’s alpha), and convergent validity (Pearson’s correlations).

EFA confirmed a unidimensional structure (loadings 0.40–0.73; variance explained 34.42%). Internal consistency was robust (α = 0.80). The SP-BR showed a moderate correlation with the FACIT-Sp-12 (r = −0.50, p ≤ 0.001).

The SP-BR is a validated, unidimensional Brazilian Portuguese instrument suitable for holistic suffering assessment in clinical settings.

The SP-BR is a brief tool for holistic suffering assessment, making it suitable for efficient screening in clinical and research settings, including those with limited resources.

Carers of people living with breathlessness face common challenges due to the chronic, distressing and unpredictable nature of the symptom. These include unmet information and support needs resulting in worsened health and psychosocial outcomes. This review aimed to (1) identify the relative volume of studies on supportive interventions for carers of people living with breathlessness due to different respiratory diseases, (2) characterize the nature of the interventions, and (3) explore their reported effectiveness on outcomes identified by carers as being important.

Medline and CINAHL were searched for studies reporting interventions targeting unpaid adult carers of people with breathlessness, lung cancer, chronic obstructive pulmonary disease (COPD), Interstitial Lung Diseases (ILD) published 2000-2025. Intervention characteristics and reported outcomes were extracted and compared across diagnoses and intervention categories. Our findings were shaped by consultation with unpaid carers in a series of patient and public involvement workshops.

From 72 included interventions, three approaches were identified: Education, therapeutic support, and interventions for patient management. Interventions for lung cancer carers most frequently offered therapeutic support to the carer, while those for COPD carers most frequently focused on managing the patient. COPD and ILD carers have been underserved by research. We found few therapeutic support interventions for COPD carers. Reporting of carer demographics was poor, including among RCTs.

There was a dominance of research focusing on carers of people with lung cancer (56% of participants). In PPI consultations, carers identified stigma and poor communication with health providers as factors contributing to the disparity between lung cancer and other respiratory diseases. More research is needed to compare the efficacy of different intervention strategies to improve outcomes that matter most to carers. To improve equity, researchers must consistently report carer demographics and prioritize developing interventions for carers underserved by research.

The aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question “what are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?”

This qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.

Thematic synthesis of the data generated five analytical themes: Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving; and Future uncertainty and facing death. The findings illustrated the complexity of the caregiving role and highlight unmet needs during the end of life stage.

This evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.

Adult children caring for a parent with cancer often assume the role of a “surrogate seeker,” looking online for information regarding their parent’s diagnosis, which they may then discuss with their parent’s clinician. The current study aims to apply the previously developed “Stoplight typology” to explore caregivers’ experiences discussing online health information with their parents’ clinicians and factors associated with each response type within the typology.

We conducted an online survey of adult children caring for a parent with a blood cancer about their experiences communicating with their parent and their parent’s clinicians. We used regression analyses to examine the association between physician responses as categorized according to the stoplight typology with 3 caregiver communication measures assessing eHealth literacy, caregiver communication, and physician–caregiver and patient communication. Second, we examined the experiences participants had with clinician communication about online health information.

A total of 121 caregivers completed the survey. Over half reported clinicians giving green light responses, with fewer reporting yellow or red light responses. Lower eHealth literacy significantly predicted greater likelihood of red light responses, whereas higher self-reported communication skills predicted more green light and fewer red light responses; neither communication measure predicted yellow responses. Thirty-two percent did not discuss their most recent online search with clinicians, most commonly because they saw no need. Seventy-four percent had discussed online information with a clinician, and 56% of these encounters were coded as green light responses. Among caregivers who had been told not to search online, 77% continued to do so despite the clinician’s discouragement.

The study findings provide support for the stoplight typology in a caregiver population. Although most clinician responses were engagement responses, results demonstrate that the rejection response is ineffective. Future research could examine caregivers who reported lower eHealth literacy to target for future intervention.

Randomized controlled trials (RCTs) of the Collaborative Care Model demonstrate strong evidence for effectively managing depression in a stepped-care approach across diverse patient populations. Despite alignment with the American Society of Clinical Oncology guidelines, which recommend a stepped-care approach for managing depression and anxiety in cancer patients, implementation of collaborative care in cancer centers remains limited and sparse real-world data exist. The Supportive Oncology Collaborative, a program integrating behavioral health and palliative care, was developed at an NCI-designated academic cancer center. This study aims to evaluate depression outcomes within this collaborative care program.

A retrospective analysis was conducted on patients with at least 2 Patient Health Questionnaire-9 (PHQ-9) scores recorded within a 12-month period between January 2022 and December 2023 at 1 regional campus. Depression response, defined as a 50% reduction in PHQ-9 scores, was assessed at 12 and 24 weeks. Response rates were compared to those reported in RCTs of collaborative care.

Mean PHQ-9 scores were 17.3 at baseline (n = 47), 11.1 at 12 weeks (n = 43), and 10.1 at 24 weeks (n = 22). Depression response rates were 34.9% at 12 weeks (n = 43) and 54.5% at 24 weeks (n = 22).

We observed depression response rates comparable to those reported in RCTs of collaborative care in individuals with cancer. However, the high proportion of missing data highlights the difficulty of tracking outcomes in real-world clinical settings and the need for further evaluation and strategies to improve data completeness.

Palliative care seeks to enhance the quality of life for individuals with serious illnesses and their families by addressing physical, emotional, and psychological needs. This phenomenological study examines the lived experiences of 8 caregivers in palliative care settings in Türkiye, focusing on the challenges they face, the coping mechanisms they employ, and their reflections on the caregiving role. Special emphasis is given to both psychological and somatic signs of stress, along with the possible advantages of body-oriented resilience techniques.

Using a phenomenological qualitative design, semi-structured interviews were conducted with 8 caregivers providing care to relatives in a hospital-based palliative care unit. Data were collected between February and April 2023 and analyzed through conventional content analysis.

Four central themes emerged from inductive coding: harmony in healing, navigating difficulties, resilience in palliative care, and reflections on the finite. The findings reveal a dual reality: palliative caregivers derive meaning and satisfaction from compassionate connections, high-quality clinical care, and peer support, yet they also endure significant burdens, including emotional strain, physical exhaustion, disrupted daily routines, and shifting relational dynamics. Anticipatory grief and chronic stress responses were prevalent, frequently manifesting in both psychological and somatic forms (e.g., sleep disturbances, muscle tension, and autonomic arousal). Despite these challenges, palliative caregivers employed spiritual beliefs, peer interactions, and self-care routines as resilience strategies.

The mind–body challenges identified in the study emphasize the need for interventions that focus on self-regulation and resilience, including body-oriented approaches that strengthen internal resources, regulate stress responses, and encourage adaptability. Incorporating such approaches into group-based settings may improve mutual support and enhance both individual and relational well-being. The study highlights the importance of comprehensive, caregiver-centered support systems to reduce burden and improve the overall quality of palliative care.

To explore cancer patients’ understanding of Advance Care Planning (ACP) and identify the main barriers hindering its effective implementation in clinical practice.

This qualitative descriptive study included Brazilian women with breast cancer aged 18–75 years, all with preserved functional status, recruited by convenience sampling. Exclusion criteria were difficulty using online calls or significant communication impairment. Data collection involved a sociodemographic questionnaire and a follow-up interview. After receiving an informational brochure, participants were contacted by video call 14 days later and asked, “How do you understand what ACP is?” Interviews were conducted confidentially at home, transcribed, and analyzed according to qualitative research reporting guidelines.

Sixty-one women participated. Most had difficulty understanding ACP; nearly 40% could not define it. Main barriers included cultural resistance to discussing death, reliance on family members or physicians for decision-making, and lack of clear information. Many participants confused ACP with preventive care. A conceptual multilevel model was developed, showing how cultural taboos, family dependence, and systemic inertia interact to sustain barriers through a feedback loop in which cultural avoidance reinforces structural gaps and institutional neglect.

This study provides evidence on how ACP is understood and misinterpreted by cancer patients in a middle-income Latin American setting, an area that remains underrepresented in the literature. By demonstrating that misconceptions, cultural taboos, and systemic barriers operate through a reinforcing multilevel process, the findings offer a conceptual framework that explains why ACP remains marginal in routine oncology care. The model highlights critical points for intervention, including patient education, professional communication, and institutional support, and is directly applicable to similar sociocultural contexts characterized by strong family involvement and biomedical dominance. These results have clear implications, supporting the integration of ACP as a proactive, relational, and value-based process rather than a late end-of-life intervention.

Hepatocellular carcinoma (HCC) is associated with high mortality and imposes substantial symptom and psychological burdens; however, the impact of different treatment modalities on quality of life (QoL) and mental health remains underexplored. This study aimed to examine the associations among symptom distress, depression, and QoL across various HCC treatments.

A cross-sectional study was conducted with 101 inpatients at a regional hospital in Taiwan (October 2020–December 2021). Patients received hepatic resection (HR), radiofrequency ablation (RFA), transarterial chemoembolization (TACE), hepatic arterial infusion chemotherapy (HAIC), or immunotherapy (IT). Data were collected using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30), the Hospital Anxiety and Depression Scale (HADS), and the Brief Symptom Rating Scale (BSRS).

RFA patients reported better functional scores (96.13 ± 7.55) and lower HADS scores (18.31 ± 4.92) than those treated with TACE, HAIC, or IT (function: 87.77 ± 17.77; HADS: 23.26 ± 7.66). These differences may reflect earlier disease stage and better baseline health in RFA recipients. Older age and advanced stage were associated with poorer global health (p < 0.05), while female gender (β = − 7.38, p = 0.014) and disease recurrence (β = − 6.48, p = 0.019) were associated with lower functional status.

Treatment type, disease stage, and demographics significantly shape QoL and mental health in HCC patients. Minimally invasive therapies like RFA may preserve QoL in early-stage disease, while invasive or palliative treatments necessitate greater psychosocial support.

To pilot a registry to evaluate the use and effectiveness of interventional cancer pain management.

Upon interventional pain procedure scheduling, patient demographics, cancer, and pain information were entered into the longitudinal clinical registry in 2 tertiary hospitals in Sydney, Australia (Royal Prince Alfred Hospital and Chris O’Brien Lifehouse). Details of the procedure (including proceduralist, nature of the intervention, and site of treatment), post-procedure patient-reported outcomes and quality of life surveys, adverse events, and mortality data (when known) were collected longitudinally.

Between October 2021 and March 2023, 48 patients underwent 55 procedures. Procedures included treatment targeting autonomic plexuses, peripheral nerves, fascial planes, and neuraxial structures. Celiac plexus neurolysis was the most frequently reported procedure (33.3%). Post-procedure, there was a trend in reduction in pain intensity on the Patient-Reported Outcome Measurement Information System (p < 0.01), reduction in opioid consumption, and improvement in quality of life on the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core-15-Palliative Care.

This is a vital first step in creating a more widely applicable registry evaluating cancer pain intervention. It provided valuable information on the range of available pain intervention procedures and data on patient-reported outcome measures using validated instruments. This will facilitate a timely review of clinical practice to improve future patient care. An Australian-wide database of cancer pain will be a valuable next step in the improvement of cancer pain management.

Clinical trial number: not applicable.

Dignity is a crucial value in caring for nursing home residents. These residents are extremely vulnerable due to, among others, their physical, social, and mental health risks. These risk factors can undermine their sense of dignity and induce feelings of inferiority and even depression.

Dignity Therapy is a short, individualized psychotherapy aimed at decreasing the existential distress of patients with a terminal illness. It appeared to be successful in patients with incurable cancer and could be a valuable addition to the treatment of loss of dignity in nursing homes. We evaluated the feasibility of implementing Dignity Therapy in Dutch nursing homes and explored its potential effects on residents’ dignity, depression, and self-esteem.

A pre–post feasibility study was conducted in 2 nursing homes. Psychologists were trained to recruit residents and deliver Dignity Therapy. Standardized questionnaires were administered at baseline and follow-up to assess dignity, depressive symptoms, and self-esteem.

Psychologists were able to recruit and deliver the intervention to 36 residents. Participants generally evaluated the experience as pleasant and meaningful. No significant differences were found between pre- and post-measurements for dignity, depressive symptoms, and self-esteem. Regarding depressive symptoms, men and non-religious residents showed higher levels of depressive symptoms after the 8-week follow-up.

Dignity Therapy is feasible and acceptable for residents in Dutch nursing homes. Although no significant effects on dignity, depression, or self-esteem were detected, further research with larger samples and optimized implementation strategies is needed to understand the potential impact of Dignity Therapy in this setting.

The families of cancer patients experience many forms of distress, as a result of their loved one’s cancer diagnosis. However, there have been no reports of suicide attempts of caregivers directly linked to the diagnosis of advanced cancer in a family member.

We reported a caregiver who attempt suicide two months after his wife was diagnosed with advanced cancer.

The subject was a 69-year-old male who had been caring for his wife, diagnosed with advanced stomach cancer, for two months. The patient’s husband, acting as her caregiver, was referred by his wife (a cancer patient) to meet with a nurse. He reported insomnia and a desire for hastened death. Despite repeated recommendations for specialized care at a caregiver clinic, he declined. Following an argument with his wife at home, he felt unable to cope and attempted suicide. The husband had no psychiatric history but had a history of colon cancer. After the attempt suicide, he began visiting the “Caregivers’ Clinic,” where he received ongoing psychological support that continued until the death of his wife.

In cancer care, it is essential to continuously assess not only the patient’s suicide risk, but also that of closely related family members.

Emotional-approach coping (EAC), including emotional expression (EE) and emotional processing (EP), may impact stress and quality of life (QOL) in cancer populations, with some evidence that EAC effects vary by sex.

Men (n = 85) and women (n = 63) with renal cell carcinoma (RCC) completed the EAC Scale, Perceived Stress Scale (PSS), and 36-item Medical Outcomes Study Short Form Survey (SF-36) physical component scale (PCS) and mental component scale (MCS) at study entry and 10 months later. The PROCESS macro (model 7) was used to examine the indirect effect of baseline EAC (EE, EP) on 10-month QOL (PCS, MCS) via baseline PSS, with sex as a moderator of the association between EAC and PSS (i.e., four models of moderated mediation).

Bootstrap estimates of indirect effects revealed significant moderated mediation, such that, for female participants, greater EE at study entry was associated with lower PSS, which in turn was associated with higher PCS and MCS 10 months later; whereas for males, EE was not associated with PSS and was not indirectly associated with physical and mental health-related QOL via PSS. Models examining the indirect effects of EP on QOL via PSS were nonsignificant for male and female participants.

EE is an important correlate of perceived stress for females but not males with RCC. Perceived stress early in treatment has a robust association with subsequent health-related QOL. Interventions aimed at supporting EE for females with RCC may have long-term QOL benefits.