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BackgroundAdvanced cancer significantly impacts patients’ and family caregivers’ quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery. ObjectiveThe aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system. MethodsFOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points—baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline. ResultsThe study was funded in March 2022. Recruitment commenced in July 2024. ConclusionsIf shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support. Trial RegistrationClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128 International Registered Report Identifier (IRRID)PRR1-10.2196/55252

Abstract Background Advance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals. Methods Online focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding. Results We conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website. Conclusion A website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website.

AbstractBackground Data on advance care planning (ACP) among migrants in Europe is lacking. Research has shown that few older migrants in the United States perform ACP due to healthcare system distrust, collectivistic values and spirituality/religion.Objectives To explore the ACP knowledge and perspectives of older Turkish-origin adults in Belgium requiring palliative care.Method General practitioners (GPs) in Brussels and Antwerp recruited Turkish-origin participants aged ≥ 65 years with palliative care eligibility for this qualitative study. A GP conducted semi-structured interviews in Turkish in respondents’ homes between May 2019 and February 2022 using a topic guide. Two researchers performed combined inductive/deductive thematic data analysis.Results All 15 interviewees (average age, 79 years) lacked ACP awareness and information. Some had discussed specific end-of-life preferences (e.g. care location, burial place) with family. Still, many did not feel the need to discuss future healthcare preferences, due mainly to trust in God and family for caretaking and decision-making. Some respondents viewed ACP discussions as applicable, relieving the burden on family and enabling proactive addressing of ‘what if’ questions. Self-identified ACP barriers were fear of making wrong decisions, ‘living in the moment’ and difficulty discussing death. Facilitators were obtaining sufficient ACP information and recent family illness or death.Conclusion Our sample of Turkish-origin older adults in Belgium requiring palliative care lacked ACP knowledge. Our findings suggest that their lack of engagement in discussing end-of-life medical care planning was linked to their family dynamics and religion. The findings have implications for healthcare providers to ethnic-minority groups.

Background Web-based tools (e.g., websites, apps) for people with dementia and their family caregivers may be useful in supporting advance care planning (ACP). Using a user-centred design approach, we developed an ACP website for people with dementia and their families. This protocol describes how we will test and evaluate the ACP website. Publishing a study protocol can guide others who want to evaluate web-based tools. Moreover, the data collection methods used in this study are very innovative since they aim to involve people living with dementia without overburdening them. Methods We will conduct an evaluation study of the ACP website in Flanders, Belgium, using a convergent parallel mixed methods pre-post-test design with continuous follow-up. Thirty eligible dyads of people with mild to moderate dementia (both early and late onset) and their family caregivers will use the website in their everyday life for 8 weeks. We will evaluate the usage, usability, acceptability, and feasibility of the website, as well as the experiences of users. Additionally, we evaluate the effects of using the website on ACP readiness, ACP knowledge, attitudes, perceived barriers to engage in ACP, self-efficacy and skills to engage in ACP Results Recruitment and data collection is foreseen between end of 2022 and 2023. Conclusion This evaluation study of an ACP website for people with dementia and their family caregivers will be the first to evaluate how a web-based tool can support people living with dementia and their families in ACP. The strength of this study lies in the combination of interviews, surveys, and ongoing data logging, which provide insights into the use of support tools in people's daily context. We expect that recruiting people with dementia and their families will be difficult so we have set up a thorough strategy to reach the anticipated sample size.

BackgroundWeb-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families. ObjectiveThis paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families. MethodsThe development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire. ResultsThis study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023. ConclusionsThe methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study. International Registered Report Identifier (IRRID)DERR1-10.2196/46935

Abstract Background Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient’s values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) – an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. Methods Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. Results The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. Conclusion The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

IntroductionDespite the relevance of advance care planning (ACP) for people with dementia, its uptake in this population is particularly low. Several challenges for ACP in dementia have been identified from physicians’ perspectives. However, the literature available mainly includes general practitioners and focuses exclusively on the context of late-onset dementia. This is the first study to inquire physicians from four highly relevant specialisms in dementia care, with a focus toward potential specificities based on patients’ age. The research question of this study is: “What are physicians’ experiences with and perspectives on discussing ACP with people with young- and/or late-onset dementia?”.MethodsFive online focus groups were conducted with 21 physicians (general practitioners, psychiatrists, neurologists and geriatricians) in Flanders, Belgium. Verbatim transcripts were analyzed through the qualitative method of constant comparative analysis.ResultsPhysicians believed that the societal stigma related to dementia influences people’s reaction to their diagnosis, at times characterized by catastrophic expectations for the future. In this regard, they explained that the topic of euthanasia is sometimes addressed by patients very early in the disease trajectory. Respondents paid ample attention to actual end-of-life decisions, including DNR directives, when discussing ACP in dementia. Physicians felt responsible for providing accurate information on both dementia as a condition, and the legal framework of end-of-life decisions. Most participants felt that patients’ and caregivers’ wish for ACP was more driven by who their personality than by their age. Nonetheless, physicians identified specificities for a younger dementia population in terms of ACP: they believed that ACP covered more domains of life than for older persons. A high consistency regarding the viewpoints of physicians from differing specialisms was noted.DiscussionPhysicians acknowledge the added value of ACP for people with dementia and especially their caregivers. However, they face several challenges for engaging in the process. Attending to specific needs in young-onset, in comparison to late-onset dementia, requires ACP to entail more than solely medical domains. However, a medicalized view on ACP still appears to be dominant in practice as opposed to its broader conceptualization in academia.

Abstract Background Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . Date and version identifier 20211209_DIAdIC_Protocol_Article.

Abstract Background Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. Methods We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10–18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents’ and parents’ attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents’ perspective of shared decision making in the last clinical encounter, and the paediatric oncologist’s intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. Discussion The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. Trial registration The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021.

Abstract Background Advance care planning (ACP), a process of communication about patients’ preferences for future medical care, should be initiated in a timely manner. Ideally situated for this initiation is the general practitioner (GP). The intervention to improve the initiation of ACP for patients with a chronic life-limiting illness in general practice (ACP-GP) includes an ACP workbook for patients, ACP communication training for GPs, planned ACP conversations, and documentation of ACP conversation outcomes in a structured template. We present the study protocol of a Phase-III randomized controlled trial (RCT) of ACP-GP that aims to evaluate its effects on outcomes at the GP, patient, and surrogate decision maker (SDM) levels; and to assess the implementation process of the intervention. Methods This RCT will take place in Flanders, Belgium. Thirty-six GPs, 108 patients with a chronic, life-limiting illness, and their (potential) SDM will be recruited, then cluster-randomized to the ACP-GP intervention or the control condition. The primary outcome for GPs is ACP self-efficacy; primary outcome for patients is level of ACP engagement. Secondary outcomes for GPs are ACP practices, knowledge and attitudes; and documentation of ACP discussion outcomes. Secondary outcomes for patients are quality of life; anxiety; depression; appointment of an SDM; completion of new ACP documents; thinking about ACP; and communication with the GP. The secondary outcome for the SDM is level of engagement with ACP. A process evaluation will assess the recruitment and implementation of the intervention using the RE-AIM framework. Discussion While the general practice setting holds promise for timely initiation of ACP, there is a lack of randomized trial studies evaluating the effectiveness of ACP interventions implemented in this setting. After this Phase-III RCT, we will be able to present valuable evidence of the effects of this ACP-GP intervention, with the potential for offering a well-tested and evaluated program to be implemented in general practice. The results of the process evaluation will provide insight into what contributes to or detracts from implementation success, as well as how the intervention can be adapted to specific contexts or needs. Trial registration Prospectively registered at with ISRCTN ( ISRCTN12995230 ); registered 19/06/2020.

Background: Significantly fewer individuals with migration backgrounds than native-born individuals undertake advance care planning. Older adults with Turkish and Moroccan backgrounds represent one of the largest ageing non-Western minority groups in Europe. Their relatives could play important roles in facilitating or hindering advance care planning, but their views remain underexplored. Aim: To explore advance care planning knowledge, experience, views, facilitators and barriers among older Turkish and Moroccan adults' relatives in Belgium. Design: Qualitative thematic analysis of semi-structured interview data. Setting/participants: Twenty-two relatives of older Turkish and Moroccan adults in Brussels, Mechelen and Antwerp, recruited via general practitioners. Results: Participants had limited advance care planning knowledge and had not discussed it with healthcare professionals. Some found discussing end-of-life preferences with relatives beneficial; others opposed the discussion of specific topics or felt discussions were unnecessary, as they felt responsible for caregiving and trusted by their relatives to make future decisions. Barriers included personal and relational characteristics, emotional difficulty and perceived non-urgency. Facilitators included information in older adults' native languages, general practitioners' cautious initiation and the involvement of several family members. Conclusions: Relatives of older people with Turkish and Moroccan backgrounds are unfamiliar with advance care planning and have highly variable views on it. People should be given opportunities to discuss advance care planning in a culturally appropriate manner, and the diversity of perspectives regarding whether and how to engage in such planning should be recognised. ClinicalTrials.gov no. NCT05241301. [ABSTRACT FROM AUTHOR]

Introduction Amyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time.Methods and analysis A qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants.Ethics and dissemination This protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group’s (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

BackgroundThere is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature. ObjectiveThis study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated. MethodsWe systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28—a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables. ResultsA total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources. ConclusionsA variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence. Trial RegistrationPROSPERO CRD42020184112; https://tinyurl.com/mruf8b43

Objective: To identify predictors of sexual satisfaction in patients with advanced cancer and their family caregivers. Methods: Cross‐sectional study using baseline survey data from a randomized controlled trial in six European countries. Patients with advanced cancer and their family caregiver completed measures on sexual satisfaction (one item from Functional Assessment of Cancer Therapy ‐ General questionnaire for patients and Caregiver Quality of Life Index‐Cancer scale for family caregivers) and health‐related characteristics. Multivariable linear regressions were performed for all predictors (identified based on literature) with sexual satisfaction as dependent variable. Results: The sample comprised 431 patient‐family caregiver dyads. Patients with prostate or gynecological cancer reported lower sexual satisfaction (respectively B = −0.267 95% CI: −1.674, −0.594 and B = −0.196, 95% CI −2.103, −0.452). Higher emotional (B = 0.278, 95% CI 0.024, 0.057) physical (B = 0.305, 95% CI 0.012, 0.025) and social functioning (B = 0.151, 95% CI 0.001, 0.013), global health (B = 0.356, 95% CI 0.007, 0.013) and social wellbeing (B = 0.161, 95% CI 0.013, 0.082) among patients were associated with higher sexual satisfaction. Among family caregivers, sexual satisfaction was lower with increased age (B = −0.142, 95% CI −0.022, −0.004). Higher emotional functioning (B = 0.027, 95% CI 0.011, 0.043) and quality of life (B = 0.165, 95% CI −0.165, 0.716) were associated with higher sexual satisfaction in family caregivers. Conclusions: The results underscore that sexual wellbeing of patients and family caregivers is related to health related factors in physical, emotional, and social domains. Patients and family caregivers could benefit from a dyadic approach to address sexual wellbeing. [ABSTRACT FROM AUTHOR]