BACKGROUND:Family carers are central to providing high quality palliative care. However, gaps remain in our understanding of how best to support carers. In 2010, the European Association for Palliative Care published a White Paper on 'Improving Support for Family Caregivers'. The White Paper informed the research agenda in family caregiving, but requires updating due to recent advances in research and practice. AIM:To update the White Paper from 2010 and undertake a systematic review of reviews to identify key priorities for research into family caregiving in palliative care. DESIGN:A systematic review of reviews (PROSPERO registration: 2024 CRD42024591671). DATA SOURCES:Web of Science, Scopus, CINAHL, ASSIA, Medline Ovid, APA PsychInfo and the Cochrane Database were searched from January 2010 to September 2025. Articles were included if they presented research priorities or recommendations relating to family caregiving in palliative care. The Critical Appraisal Skills Programme checklist was used to appraise the quality of included reviews. RESULTS:The database searches returned 823 references, after screening 30 reviews were included. Four main areas of priority for future research were identified: improving methods and methodologies; carer centred research priorities; health systems research priorities; and research focused on carer roles and integration within healthcare teams. CONCLUSIONS:This review highlights research priorities for family caregiving in palliative care. Significant gaps remain in our understanding of how best to support carers, and innovative research methods are required to better understand and evaluate diverse carer experiences in the context of expanding demand for unpaid care globally.

BACKGROUND:Cancer is among the largest drivers of morbidity and mortality worldwide, causing physical, psychological and emotional strain for both patients and caregivers. AIM:We estimated the cost-effectiveness of two dyadic psychoeducational interventions (FOCUS+ and iFOCUS) compared to usual care for people with advanced cancer and their primary family caregiver. METHODS:This was an economic evaluation within a clinical trial. Patient-caregiver dyads were recruited in Belgium, Denmark, Ireland, Italy, Netherlands and the UK from 2021 to 2023. We estimated costs by combining questionnaire responses with unit costs in euros (€) for 2022 and calculated outcomes as quality-adjusted life years (QALYs). Primary endpoint was 12 weeks, with secondary analysis at 24 weeks (trial exit). RESULTS:We recruited 431 dyads (140 FOCUS+, 148 iFOCUS, 143 usual care), of whom 281 (65%) participated to trial end. In primary analysis, estimated treatment effect of FOCUS+ versus usual care on total costs was +€253 (95% CI: -1440 to +3466), and estimated effect on QALYs was +0.010 (-0.02 to +0.04). For iFOCUS compared to usual care, the estimated effects were -€178 (-3047 to +2059) and - 0.001 (-0.04 to +0.04). Estimated incremental cost-effectiveness compared to usual care was highly uncertain in primary analysis, and in sensitivity analyses to timeframe and perspective. CONCLUSION:Two dyadic, psychoeducational interventions for people with advanced cancer and their caregivers were not found to have a significant effect on costs, QALYs or cost-effectiveness compared to usual care. Multiple additional lessons for future trials in serious illness have been identified. TRIAL REGISTRATION:Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349.

Background: Supporting psychoeducational functioning for advanced cancer patients and informal caregivers (dyads) can be challenging. Self-managed digital interventions offer a possible cost-effective alternative but often face low engagement.Aim: To examine engagement with the iFOCUS intervention and to understand why it failed to improve the expected outcomes.Design: iFOCUS, a four-session digital self-managed 12-week intervention for dyads, was tested in six European countries as part of a randomized controlled trial. However, it showed no effects on outcomes. Using process evaluation data with 121 dyads, measures of engagement were examined to identify how engagement predicts dropout and to identify associations with patient/caregiver characteristics, post-intervention outcomes, and patient/caregiver evaluation of the intervention.Results: Measures of engagement showed variation in associations with participant characteristics. Lower engagement with the intervention among dyads at the outset, was associated with greater odds of dropout and engagement with the intervention decreased as the dyads progressed. Patients' level of education and caregivers' baseline emotional function, self-efficacy, dyadic coping, and knowledge of cancer were associated with engagement. However, there was no consistent evidence that engagement was associated with outcomes or evaluation of the intervention.Discussion: While we identified several associations between engagement and patient/caregiver characteristics, there were inconsistencies in the extent and nature of the associations, with more evidence that baseline characteristics impacted engagement, than evidence that engagement impacted on outcomes. However, using multiple measures of engagement did provide additional insights. A key recommendation from this study is the need for consideration of assessments of engagement for digital interventions.

BACKGROUND:Family caregivers take on substantial caregiving responsibilities and report unmet support needs of their own when caring for a person with life-threatening illness. AIM:To explore self-rated support needs and their association with preparedness for caregiving among family caregivers in specialised palliative home care. METHODS:Family caregivers of patients with life-threatening illness were recruited. Family caregivers completed questionnaires at baseline and 4 weeks later, including the Preparedness for Caregiving Scale and the Carer Support Needs Assessment Tool. Descriptive statistics and linear regression analyses were performed. RESULTS:Family caregivers' (n=153) support needs varied over time across several domains. Unmet needs were associated with lower baseline preparedness for caregiving, but a greater improvement in preparedness over time. When needs were met, family caregivers showed a significant improvement in their sense of preparedness. CONCLUSIONS:Support needs and preparedness for caregiving are closely related. Addressing support needs is important to enhance preparedness.

Background: Despite policy and health service imperatives for public involvement to be embedded within palliative care research, this practice is not commonplace. Few empirical studies have sought to explore and evaluate models of public involvement for palliative care. Aim: To explore experiences of public involvement within palliative care, and to identify enablers for successful models of involvement. Design: An exploratory qualitative design was utilized. Semi-structured interviews were conducted via zoom or telephone, and interview transcripts were subjected to inductive thematic analysis. Setting/participants: Purposive sampling of 23 participants with experience of public involvement in palliative care or related areas, across different health institutions in Australia and the United Kingdom, including public members and public involvement program coordinators. Results: Twelve public members and 11 program coordinators described their experience with public involvement in a palliative or related healthcare setting. Three themes emerged relating to successful involvement (1) Relationship building and maintenance: opportunities to enhance team familiarity, early involvement, consistent point of contact, and inclusion of more than one public member. (2) Clarity around goals of involvement: flexible roles and processes, ongoing communication, formal recognition of public input. (3) Training and support: mentoring opportunities, upskilling for public members and researchers. These enablers promoted a collegial atmosphere that enhanced personal and collective experiences of public involvement. Conclusions: This study reveals enablers that potentially shape the extent and effectiveness of public involvement in palliative care. Integrating these enablers has implications for future models of public involvement in palliative care and potential for enhanced research outcomes.

OBJECTIVE:Preparedness for caregiving refers to how ready family caregivers perceive themselves for caregiving tasks and stress of the caregiving role. This study investigated whether a web-based psychoeducational intervention could improve preparedness for caregiving among family caregivers of patients receiving specialized palliative home care. METHODS:The intervention "narstaende.se" was provided via a website featuring 23 short videos in which healthcare professionals and family caregivers (actors) discussed key care-related issues. Family caregivers were randomized to the intervention or control group and completed the Preparedness for Caregiving Scale (PCS) at baseline, 4 weeks, and 8 weeks. Data were analyzed using linear mixed models. The intervention effect was assessed based on PCS scores of the entire sample, followed by subgroup analyses based on level of baseline preparedness for caregiving, participation in physical care, and active intervention use, as determined by responses to single-item questions. RESULTS:A total of 205 family caregivers were recruited (103 intervention, 102 control). The intervention had no significant effect on preparedness for caregiving, including in subgroups based on level of baseline preparedness for caregiving, participation in physical care, or active intervention use. However, all subgroups reported higher levels of preparedness for caregiving at both follow-up assessments than at baseline. CONCLUSIONS:Preparedness for caregiving improved over time in both the intervention and control groups, suggesting other contributing factors. Limited participant engagement may explain the lack of intervention effect. Future studies should evaluate the intervention with more structured and clinically integrated use.

Background:The aim of this manuscript was to describe the frequency and types of nurse-identified needs, recommendations, and referrals delivered to intervention-arm carers of patients with high-grade glioma (HGG) during monthly nurse-led telephone assessments in the Care-IS randomized controlled trial. Methods:Primary carers of patients diagnosed with HGG (≤2 months prior) and undergoing active treatment were randomized to: a 12-month Care-IS intervention; or, a control group. Carers randomized to the intervention were included in this sub-analysis. Nurses recorded carers' needs and made recommendations and referrals. Data analysis descriptively explored categories of needs, recommendations, or referrals. Results:An initial Nurse Telephone Assessment (NTA) was conducted with carers (N = 92) with drop-out related to time constraints, patient deterioration or death, or study withdrawal (N = 10 at month 10). Nurses identified ≥1 need, recommendation, or referral during the majority (≥90%) of NTAs. Up to 6 months, the most common needs were: dealing with treatment and side effects (74%-85%), understanding physical symptoms and side effects (60%-76%), mental and behavioral changes (53%-67%), and caring for yourself (51%-68%). The top recommendations were: tailored resources from the Care-IS resource manual (81%-96%), community-based support (47%-65%), medical specialist and clinical care (39%-56%), and additional information provision (30%-38%). The top referrals were for medical specialists and clinical care (27%-48%). Palliative care was the main recommendation (29%) and referral (19%) at months 9-10. Conclusions:NTAs identified a high frequency of carer unmet needs. Carer needs were highly variable, patient-focused, and changed over time. Nurses must accommodate a broad range of recommendations from providing additional information to making health/community referrals.

Background: e-Health programs to empower patients with advanced cancer and their family caregivers can improve their quality of life. Successful engagement with e-Health programs requires digital competence. People with lower digital competence might be less likely to participate and complete e-Health trials, affecting trial validity. The objective of this work was to explore how digital competences differ between individuals according to sociodemographic characteristics and how it influences participation and retention in a trial with an e-Health component. Methods: We analyzed data collected as part of the Dyadic Psychoeducational Interventions for patients with advanced cancer and their Informal Caregivers DIAdIC (DIAdIC) trial, in which a psychoeducational web and face-to-face program for patients with advanced cancer and their family caregivers were developed and tested. Recruitment log files were quantitatively assessed for nonparticipation reasons. Descriptive statistics outlined sociodemographic factors and digital competence. Multivariable linear regressions assessed digital competence. We reported unstandardized coefficients, 95% confidence intervals, and p-values. Logistic regressions examined retention rates. We reported odds ratios and 95% confidence intervals. Results: Among those refusing participation in the trial (N = 1752), 2.1% (n = 37) cited information and communication technology (ICT)-related factors. Enrolled patients reported lower digital competence than family caregivers (mean 3.07, SD 0.94 vs. 3.17, SD 0.090; p = 0.046). While digital competence varied by sociodemographic characteristics of patients and their family caregivers, digital competence did not significantly predict dropout. Conclusion: ICT-related factors were rarely mentioned as a reason for nonparticipation. Digital competence is associated with sex, age, trial location, educational attainment, and perception of income. e-Health-related factors or digital competence are no reasons for nonparticipation in studies with an e-Health component.

Objectives In home-based care for severely ill patients, family caregivers' contributions are crucial. This study aimed to explore how a web-based psychoeducational intervention influences family caregivers' experiences in addressing challenges while caring for a patient with life-threatening illnesses during specialized home care.Methods This qualitative study undertook semi-structured interviews with family caregivers of patients with life-threatening illness receiving specialized home care. Family caregivers participated in a randomized controlled trial evaluating a psychoeducational intervention delivered through a website. Interviews were performed with 17 family caregivers; 13 spouses, 2 adult children, 1 parent, and 1 sibling, and analyzed using qualitative content analysis.Results The results indicate that the intervention resonated with the family caregivers' situation which gave them comfort and awareness. It inspired self-reflection on the caregiver role that provided new insights and encouraged communication with the patient. The intervention prepared family caregivers for the patient's progressing illness and death. While preparing was a help for some, others did not feel ready to face this, which led them to avoid parts of the website.Significance of results This psychoeducational web-based intervention guided family caregivers as they addressed challenges in caregiving and prepared for the future, and they valued having access to such an intervention. In a time of decreasing healthcare resources, web-based support may be a useful alternative to in-person interventions. It is important to continue developing, evaluating, and implementing web-based interventions to meet the needs of family caregivers.

BACKGROUND:Despite significant advances in the availability and quality of palliative care globally, health economics research to understand the value of palliative care in Australian settings remains scarce. To address knowledge gaps and foster evidence-informed policy, funding and practice, this paper presents a consensus-driven research agenda for the health economics of palliative care in Australia. METHODS:A panel of 27 Australian experts was convened, including health economists, palliative care clinicians/researchers, policy makers/government officials, and representatives from the national peak body for palliative care. Panel members completed a survey, participated in a forum and collectively drafted the research agenda. RESULTS:The panel recommended 16 health economics research priorities across four key areas: (1) person-centred outcomes; (2) costs; (3) economic evaluation; and (4) data and metrics. Specific priorities included: comprehensively capturing the benefits of palliative care for people with life-limiting illnesses and their informal carers; understanding the diversity of preferences for palliative care across the population; capturing informal caring costs within economic evaluations; embedding economic evaluation within clinical trials and health services studies; and quantifying the extent and location of unmet palliative care needs. CONCLUSIONS:This paper outlines high-priority research actions to generate the economic evidence required for appropriate funding and resource allocation in palliative care. The research agenda serves as a strategic tool to help researchers address gaps without duplicating efforts. By focusing on these priorities, we aim to support the development of more effective, equitable and sustainable palliative care services across Australia.

Background: Each year millions are diagnosed with cancer, impacting both patients and caregivers. Few interventions target both patients and family caregivers together, despite their shared experiences. While dyadic psychoeducational programs are gaining attention, evidence on developing and implementing these in international trials is limited. The DIAdIC trial faced unique challenges requiring innovative solutions to maintain study integrity. Objectives: To present our experiences with the development and implementation of two dyadic psychoeducational home-based programs, FOCUS+ and iFOCUS in the context of a randomized controlled trial (RCT) in six European countries. Design: A case report detailing our experiences in the development and implementation of two dyadic psychoeducational home-based programs (one face-to-face and one web-based) across multiple countries, highlighting the challenges and mitigating strategies in an international context. Methods: A chronological narrative describing experiences with the development and implementation of iFOCUS and FOCUS+. Results: The FOCUS+ and iFOCUS programs were successfully developed for the European context through rigorous translation and adaptation processes. Despite recruitment challenges including COVID-19 restrictions and administrative hurdles, 431 patient-caregiver dyads were enrolled across 6 European countries. Quantitative and qualitative data assessed the outcomes of FOCUS+ and iFOCUS interventions, including the primary endpoints of emotional functioning and self-efficacy. Fidelity was evaluated using audio recordings, checklists, and user data. Challenges in trial management were addressed with flexible timelines and technical support. Conclusion: The international DIAdIC trial developed and implemented two psychoeducational dyadic programs for patients with advanced cancer and their family caregivers. Based on our experiences we share several insights for future similar studies. These relate to the attention needed for context-specific adaptations when using existing interventions or programs, the translation of human-facilitated programs to standalone eHealth versions, the challenges of adopting a dyadic focus in the study, the pragmatic challenges of conducting an RCT and evaluating implementation and effects, and the technology used for study management.

Life-threatening illness affects both patients and spouses, and spousal caregivers report high levels of distress. Web-based interventions could benefit spouses' and patients' needs and shared everyday life. To explore how a family caregiver-targeted web-based psychoeducational intervention influences couples' experiences of sharing everyday life at home while facing life-threatening illness. This qualitative sub-study involved dyadic interviews with couples (spouse-patient) where the spouse was allocated to the intervention arm of a randomized controlled trial evaluating a web-based family caregiver-targeted intervention. Data were analyzed using Interpretive description. Participants were recruited from five specialized home care services in Sweden. In total, 32 participants, spouses (n = 16) and patients (n = 16) were interviewed as couples after the spouse had accessed the intervention for 4 weeks. Couples described how the spouses' access to the intervention had provided knowledge that enhanced the couple's understanding of each other's strategies for managing the impacts of the illness. The topics covered in the intervention prompted the spouses to initiate conversations that helped couples maintain a sense of mutuality. The intervention provided support to balance the tension between previous and new relational roles, which had changed due to the patient's illness. Altogether, the results show that the benefits of family caregiver-targeted interventions may extend from spouse to patient, facilitating their everyday life. Our findings complement previous intervention evaluations by providing insights into how they may be effective. The goal should be that interventions potentially benefit patients and family caregivers. The randomized controlled trial is registered at ClinicalTrials.gov, ID NCT05785494.

BACKGROUND:Advanced cancer impacts the lives of both patients and their family caregivers. They often experience substantial declines in quality of life and physical, emotional, and spiritual distress that generate significant unmet psychosocial care needs. These effects are interrelated. Dyadic psychoeducational interventions, helping dyads to manage the impact of the disease and maintain their quality of life, demonstrate benefits by concurrently addressing challenges for oncology patients and family caregivers. The aim of this study was to evaluate the effects of a face-to-face nurse-led and a web-based psychoeducational intervention for patients with advanced cancer and their family caregivers on primary (emotional function and self-efficacy) and secondary endpoints. METHODS:This international multicenter three-arm parallel-group superiority randomized controlled trial was conducted in 6 European countries (Belgium, Denmark, Italy, Netherlands, Ireland and UK). Between February 2021 and August 2023, dyads formed by patients with advanced solid cancer and their primary family caregiver were randomly assigned without blinding to a face-to-face psychoeducational intervention, a web-based psychoeducational intervention, or standard care. The two primary endpoints were 1) emotional functioning (10-item European Organization for Research and Treatment of Cancer short form), and 2) self-efficacy (Cancer Self-efficacy Scale) for patients with advanced cancer and their family caregivers at 12 weeks. Secondary outcomes included quality of life, benefits of illness appraisal, coping, and dyad communication at 12 weeks and 24 weeks. RESULTS:In total, 431 dyads were randomized to the face-to-face group (n=140), the web-based group (n=148) or standard care (n=143). Neither the face-to-face group nor the web-based group showed significant improvements compared to control group in emotional functioning for patients (-0.27; 95%CI -2.11 to 0.76 and.12; 95 % CI -1.65 to 1.89) or caregivers (30; 95 % CI -1·41 to 2·00 and 0.17; 95 % CI -1.45 to 1.79); a significant improvement of patients' self-efficacy (9.02; 95 % CI 2.45 to 15.58) in the face-to-face group was found. Further analysis indicated a positive effect at 12 weeks for the face-to-face group on patients' dyadic coping and ways of giving support, and on caregivers' problem-focused coping. There were no significant effects for the web-based group. CONCLUSION:Our trial showed neutral findings for emotional function in both a face-to-face nurse-led and a web-based psychoeducational dyadic support program. Positive findings were found for patients' self-efficacy and several secondary outcomes in patients and caregivers for the face-to-face program. Why the face-to-face but not the web-based program led to positive findings for several outcomes needs further evaluation. TRIAL REGISTRATION:Clinicaltrial.gov (NCT04626349). The trial is now closed.

Objectives Voluntary assisted dying (VAD) legislation has now been passed in all Australian states. Although VAD has been operating in many settings worldwide for a considerable time, the specific costs associated with VAD seem unclear. The aim of this study was therefore to outline the common resource implications associated with VAD. Methods A rapid literature review and grey literature search were undertaken. Results We found a paucity of empirically informed detail regarding the actual costs required to implement VAD. Hence, we tabulated a list of potential costs that could be used for subsequent evaluation and a future research agenda. Conclusions There is a lack of publicly available information related to the costs associated with implementing VAD. Given that this is a significant change in policy and many multidisciplinary practitioners may be directly or indirectly involved in VAD it is important that associated costs are clearly outlined so that appropriate resources can be allocated.

Background Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support.Objectives To describe unmet needs of highly distressed carers of people with HGG and recommendations and referrals made by a nurse to support them within the Care-IS trial.Methods Descriptive case series. Carers of people with HGG in the Care-IS trial reporting severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively.Results Four highly distressed carers were identified (N = 98). Each reported a moderate-high need at >= 1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumor unmet needs were: adjusting to changes in personality, mental and thinking abilities, and accessing government assistance. Nurses provided information about treatment, side effects, and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered.Conclusions Highly distressed carers have diverse support needs in many domains, which can change over time. Nurses were critical in identifying carers' needs, providing support, and making referrals. Carers' distress and needs require ongoing screening and management.

Background Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with.Methods Responses from 188 carers of patients with HGG participating in a randomized controlled trial of the Care-IS intervention were analyzed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyze the qualitative data and observe trends across participant responses.Results Five overarching themes were identified: carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression, and processing and supporting end-of-life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end-of-life care.Conclusions Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centered on carer needs, their changed circumstances, living with uncertainty, and care transition.