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.

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.

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.

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.

To evaluate the impact of a tailored organizational intervention on the support for family caregivers.

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.

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).

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.

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.

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.