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Objectives: Advance care planning (ACP) supports adults understanding and sharing their values, goals, and preferences regarding future medical care. General practitioners (GPs) are key figures in conducting ACP conversations with patients. GPs' ACP knowledge and attitudes have been identified as potential barriers. This study evaluates the effects of ACP-GP, a complex ACP intervention, on GPs' knowledge and attitudes., Methods: A phase-III cluster-randomised controlled trial. 35 Belgian GPs participated. The intervention included a training for GPs, ACP conversations, a patient workbook, and a documentation template. GPs' knowledge and attitudes were assessed using an adaptation of the Next Steps questionnaire, at baseline, three, and six months postintervention. Generalised estimating equations were applied to analyse the data., Results: Analyses showed no intervention effect on GPs' knowledge (W(2)=4.18, p=.123) and attitudes (all W(2)<3.85, all p>.146) compared with the control group., Conclusions: The ACP-GP intervention did not improve GPs' knowledge and attitudes. Failure to detect an effect may stem from a ceiling effect, with GPs scoring high on baseline outcomes across groups. Questionnaires may require fine-tuning to accurately map their suggested role as potential barriers., Trial Registration Number: Prospectively registered at ISRCTN (ISRCTN12995230) on 19 June 2020., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ Group.)

Objective: This study aimed to evaluate a theory-based website to support people with dementia and their families in the advance care planning (ACP) process., Methods: We conducted an eight-week evaluation study with a convergent parallel mixed-methods design involving people with mild to moderate dementia and their family caregivers who used the website at their convenience. Interviews were conducted at baseline and after 8 weeks to evaluate usability, acceptability, feasibility, experiences, and effects on ACP knowledge, attitudes, perceived barriers to engaging in ACP, self-efficacy and skills to engage in ACP., Results: We included 52 participants (21 people with dementia and 31 family caregivers). In the interviews, all participants considered the website useful and valued the ACP content. Morever, participants reported that family caregivers mostly used the website alone or with the person with dementia. Participants' ACP knowledge, self-efficacy, and skills improved after 8 weeks compared the beginning of the study., Conclusion: The website may be an ideal introduction for those wanting to start ACP, providing user-friendly content and features for initiating and exploring ACP., Practical Implications: ACP in dementia requires a tailored approach. Extra support is crucial for website adoption, emphasising the role of family caregivers while respecting individuals' autonomy., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: General practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results., Methods: We conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions., Results: Thirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future., Conclusions: Implementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice., Trial Registration: ISRCTN12995230; prospectively registered on 19/06/2020., (© 2024. The Author(s).)

Background: People with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the 'Thinking Now About Later' tool, with open-ended questions about 'what matters most', and (2) a digital version of the 'Life Wishes Cards', a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers., Methods: During an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data., Results: Of 52 participants, 21 people had dementia and 31 were family caregivers. The 'Thinking Now About Later' tool and 'Life Wishes Cards' were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online., Conclusions: Although less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools., (© 2024. The Author(s).)

Background: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time., Aim: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time., Design: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants., Setting/participants: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period., Results: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future., Conclusion: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Advance care planning (ACP) is an iterative communication process about patients' preferences for future care. In general practice, there are barriers to ACP at patient, GP, and healthcare-system levels. A complex intervention may be necessary to reduce barriers., Aim: To evaluate the effects of a complex ACP intervention for patients with chronic, life-limiting illness in general practice (ACP-GP)., Design and Setting: A cluster-randomised controlled trial was undertaken in Belgian general practice., Method: ACP-GP included a patient workbook, GP training, ACP conversations, and a documentation template. The control group received usual care. Outcomes were the 15-item ACP Engagement Survey for patients and the ACP Self-Efficacy scale for GPs. Linear mixed models evaluated differences at 3 months (T1, effectiveness evaluation) and 6 months (T2) post-baseline. Analysis was intention-to-treat., Results: In total, 35 GPs and 95 patients were randomised. Patient ACP engagement did not differ between the intervention and control group at T1 (baseline-adjusted mean difference = 0.34; 95% confidence interval [CI] = -0.02 to 0.69; P = 0.062) or T2 (baseline-adjusted mean difference = 0.20; 95% CI = -0.17 to 0.57; P = 0.28). For GP ACP self-efficacy, there were no significant differences between groups at T1 (baseline-adjusted mean difference = 0.16; 95% CI = -0.04 to 0.35; P = 0.11) or at T2 (baseline-adjusted mean difference = 0.11; 95% CI = -0.09 to 0.31; P = 0.27)., Conclusion: ACP-GP did not improve patient engagement and GP self-efficacy more than usual care. Both groups showed patterns of increase from baseline. Trial procedures and the COVID-19 pandemic may have increased awareness about ACP., (© The Authors.)

Objectives: Facilitated advance care planning (ACP) helps family carers' to be aware of patient preferences. It can improve family carers' involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the family carers' involvement in decision making in the last 3 months of the patients' life and on the family carers' psychological distress after 3 months of bereavement., Methods: Over six European countries, a sample of 162 bereaved family carers returned a bereavement questionnaire. Involvement in decision making was measured with a single item of the Views of Informal Carers-Evaluation of Services Short Form questionnaire. Psychological distress was measured with the Impact of Event Scale (IES)., Results: No significant effect was found on family carers involvement in decision making in the last 3 months of the patients' life (95% CI 0.449 to 4.097). However, the probability of involvement in decision making was slightly higher in the intervention arm of the study (89.6% vs 86.7%; OR=1.357). Overall, no statistical difference was found between intervention and control group regarding the IES (M=34.1 (1.7) vs 31.8 (1.5); (95% CI -2.2 to 6.8))., Conclusion: The ACTION RC ACP intervention showed no significant effect on family carers' involvement in decision making or on subsequent psychological distress. More research is needed about (1) how family carers can be actively involved in ACP-conversations and (2) how to prepare family carers on their role in decision making., Trial Registration Number: International Standard Randomised Controlled Trial Number ISRCTN17231., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: 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: 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., (© 2023. The Author(s).)

Objectives: Research showed that people with young-onset dementia and their family caregivers raised the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may inform the evolving landscape of physician assisted dying. This study aimed to explore the considerations that people with young-onset dementia and their family caregivers expressed on euthanasia., Methods: A secondary qualitative analysis on interviews with 10 Belgian people with young-onset dementia and 25 family caregivers, using constant comparative analysis., Results: Respondents described similar contexts in which euthanasia had been discussed: the topic arose at 'key' moments, mostly with family caregivers, and was motivated by patients considering the impact of disease progression for themselves and their loved-ones. Caregivers shared opinions on the euthanasia law and discussed the emotional impact of discussing euthanasia., Conclusions: Considerations of people with young-onset dementia towards euthanasia appear rooted in personal, as well as in anticipated interpersonal and societal suffering. The negative image associated with dementia and dementia care seemed to influence people's expectations for and thoughts on the future., Practice Implications: Patient-physician communication should include detangling motives for euthanasia requests, openly discussing fears and reflecting on prognosis., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023. Published by Elsevier B.V.)

Objective: To explore advance care planning (ACP)-related knowledge, experience, views, facilitators and barriers among older Moroccan adults in Belgium., Method: General practitioners (GPs) recruited participants for semi-structured interviews. Data were analysed using the constant comparative method., Results: The 25 interviewees (average age, 74 years) lacked ACP knowledge and had not discussed it with healthcare professionals. After a brief explanation, most interviewees did not find ACP useful. After more explanation with a specific example, they had fewer religious objections and were more willing to have discussions with their GPs and/or relatives. ACP barriers were a lack of knowledge, current good health, potential harm of talking about death, trust in one's children to make care decisions and fear of worrying one's children. Facilitators were GPs' information provision, children's involvement in ACP discussions and the desire to not depend on children., Conclusion: Many older Moroccan adults lacked familiarity, but were willing to discuss ACP after receiving understandable concrete information. GPs should facilitate ACP discussions for these patients, ideally with adult children involved, with consideration of barriers, individual preferences and generally low educational levels., Practice Implications: GPs should provide comprehensible ACP information with case examples and consider potential barriers and facilitators in this group., Competing Interests: Declaration of Competing Interest The authors have stated explicitly that there are no conflicts of interest in connection with this article. This study did not receive any specific funding., (Copyright © 2023 Elsevier B.V. All rights reserved.)

This paper aims to 1) describe current levels of Advance Care Planning (ACP) development since 2002 in Belgium, 2) report on challenges and opportunities to inspire other countries with similar contextual characteristics and 3) support further development of ACP practice and research in Belgium. To address these aims, we consulted local researchers, 12 domain experts and (grey) literature (regulatory documents, reports, policy documents and practice guidelines) on ACP, palliative care, and related healthcare topics. Since 2002, when the Patient's Right Law was passed in the federal Parliament, Belgium has had a specific medicolegal context for ACP. Initiatives to improve the uptake of ACP have been taken, e.g. standardised documentation, reimbursement codes for physicians provided by the government, and implementation of quality indicators in hospitals and nursing homes. Most of these initiatives are grassroots or predominantly oriented towards a single group of professions, e.g. general practitioners, disregarding the role that other professions can play. The patient groups most often targeted are those with cancer and older adults. Limited but growing attention is given to those with low health literacy or other minority groups. Main barriers to ACP in Belgium are: no unified platform to exchange outcomes of ACP discussions or advance directives between healthcare professionals and though efforts are made, ACP is still predominantly oriented towards documentation., (Copyright © 2023. Published by Elsevier GmbH.)

Background: Family carers have a prominent role in end-of-life care for seriously ill persons. However, most of the advance care planning literature is focused on the role of healthcare professionals., Aims: To investigate (1) what proportion of family carers discussed advance care planning with their relative and associated socio-demographic and clinical characteristics (2) what proportion received support from healthcare professionals for these conversations, (3) what type of support they received and (4) to what extent the type of support received was considered sufficient., Design/participants: Population-based cross-sectional survey in Belgium of bereaved family carers of persons with a serious chronic illness ( N  = 3000) who died 2-6 months before the sample was drawn, identified through three sickness funds. The survey explored support from healthcare professionals for family carers during the last 3 months of the patient's life., Results: Response rate was 55%. The proportion of family carers that engaged in an advance care planning conversation with their relative was 46.9%. Of these family carers, 78.1% received support from a healthcare professional, mostly by doing the advance care planning conversation together (53.8%). Of family carers receiving support from a healthcare professional, 57.4% deemed the support sufficient., Conclusion: Many family carers engage in advance care planning conversations with their dying relative. Healthcare professionals often support them by performing the advance care planning conversations together. More insight into how family carers can be supported to conduct these advance care planning conversations, both with and without involvement of healthcare professionals, is necessary.

Background: Advance care planning (ACP) has been characterised as a complex process of communication and decision making. For ACP behaviour change, underlying processes such as self-efficacy and readiness are needed. However, studies about which patient characteristics are associated with ACP have mainly focused on whether ACP actions are completed, leaving behaviour change processes unexplored., Aim: To assess whether patients' characteristics and patient-perceived quality of GP ACP communication were associated with patients' ACP engagement., Design and Setting: Baseline data were used from the ACP-GP cluster-randomised controlled trial in patients with chronic, life-limiting illness ( n = 95)., Method: Patients completed questionnaires detailing demographic and clinical characteristics, and their perception about their GPs' ACP information provision and listening. Engagement was measured using the 15-item ACP Engagement Survey, with self-efficacy and readiness subscales. Linear mixed models tested associations with engagement., Results: Demographic and clinical characteristics were not associated with engagement; nor was how much ACP information patients received from their GP or the extent to which the GP listened to what was important for the patient to live well or important to the patient regarding future care. Higher overall ACP engagement ( P = 0.002) and self-efficacy ( P <0.001) were observed in patients who gave a high rating for the extent to which their GP listened to their worries regarding future health., Conclusion: This study suggests that GPs providing information about ACP alone is not associated with a patient's ACP engagement; an important element is to listen to patients' worries regarding their future health., (© The Authors.)

Objective: To explore a) to what extent patients with serious illness express emotional cues and concerns during advance care planning (ACP) conversations with their general practitioner (GP), b) the content of cues/concerns and c) GPs' responses to cues/concerns., Methods: Cues/concerns and GPs' responses in 20 conversations were coded using the Verona Codes (VR-CoDES and Verona Codes-P). A qualitative thematic analysis was used to identify overarching themes within the content of the cues/concerns., Results: A total of 216 cues/concerns were identified (range: 1-28; mean: 13) in 85% of conversations; with 85% of these being cues/implicit expressions of emotions. In 72% of responses, the GP provided space for the patient to elaborate on cues/concerns. The most common theme cues/concerns were expressed about was "the consequences of illness on quality of life and burdening others"., Conclusion: Emotions were mainly communicated implicitly as cues and the content varied greatly. The amount of cues/concerns expressed show that ACP can evoke many emotions., Practice Implications: GPs should be attentive to implicit expressions of emotions as these provide opportunities to engage patients in tailored ACP conversations. As patients expressed many cues/concerns, GPs are recommended to have recurrent conversations with patients and actively ask about diverse ACP topics., Competing Interests: Conflict of interests The authors declare no competing interests., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Purpose: Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries., Method: The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations., Results: The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad's outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts., Conclusion: The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users., (© 2022. The Author(s).)

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., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: There 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., Objective: This 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., Methods: We 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., Results: A 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., Conclusions: A 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 Registration: PROSPERO CRD42020184112; https://tinyurl.com/mruf8b43., (©Charlèss Dupont, Tinne Smets, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 20.04.2022.)

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., (© 2022. The Author(s).)

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., (© 2021. The Author(s).)

Context: Although conversations about future medical treatment and end-of-life care are considered to be important, ethnic minorities are much less engaged in advance care planning (ACP)., Objectives: To explore ACP knowledge, experiences, views, facilitators, and barriers among older adults of Turkish origin in Belgium., Methods: This qualitative study was based on constant comparative analysis of semistructured interview content. Participants were 33 older adults (aged 65-84 years; mean, 71.7 years; median, 74.5 years) of Turkish origin living in Belgium., Results: Despite unfamiliarity with the term ACP in this sample, several participants had engaged in some ACP behaviors. Respondents considered ACP to be useful and were ready to engage in conversations about it. The most commonly mentioned facilitator was the provision of tailored information about ACP. Other facilitators included concerns about future care needs, increasing awareness among respondents' children about the advantages of ACP, and respondents' desire to avoid "burdening" their children. The most commonly mentioned barrier was respondents' lack of knowledge about ACP. Other barriers were language issues, a lack of urgency about ACP discussion, reliance on familial support, and older adults' fear of triggering negative emotions in themselves and their children., Conclusions: The provision of tailored information about ACP to older adults of Turkish origin in Belgium and the promotion of awareness about the importance of ACP among their children (when patients desire), as well as the use of professional interpreters, could facilitate ACP engagement in this population., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

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.

Objectives: Advance care planning in young-onset dementia largely remains a blind spot within current literature. This study aimed to explore the engagement in and the conceptualization of advance care planning from the perspective of family caregivers of persons with young-onset dementia and to identify potential similarities and differences in this area between American and Belgian persons with young-onset dementia and their family caregivers., Design: An exploratory qualitative study., Setting and Participants: We purposively sampled adult family caregivers of persons with young-onset dementia; our respondents were 13 American and 15 Belgian caregivers with varying familial relationships to the patient., Methods: We conducted 28 semi-structured interviews, using the same interview guide for American and Belgian respondents. Verbatim transcripts were analysed through the method of constant comparative analysis., Results: Important similarities between American and Belgian respondents were restricted knowledge of advance care planning, limited communication about advance directives, and their recommendation for professionals to timely initiate advance care planning. Major differences were attention paid to those end-of-life decisions depicted in the legislature of their respective countries, American caregivers placed higher emphasis on financial planning than their Belgian peers, and, in the case of consulting professionals for advance directives, American caregivers turned to lawyers, whereas Belgian caregivers relied on physicians., Conclusions and Implications: Specific nuances and challenges in terms of advance care planning in young-onset dementia arise from a particular societal and legal context on the one hand, and from patients' and caregivers' younger age on the other. Professionals' awareness of and responsiveness to these specificities could facilitate the advance care planning process. Based on our interpretation of results, several recommendations for practice and policy are made., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. All rights reserved.)

Background: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent., Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals., Design: A qualitative study was conducted: we analysed semi-structured interviews ( n  = 15) through the method of constant comparative analysis., Setting/participants: We included Flemish family caregivers of persons with young-onset dementia., Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondents' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged., Conclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.

Background: Research about advance care planning (ACP) has often targeted those with serious illness and limited prognosis, thereby not addressing the preferences of healthy adults or adults with a stable condition., Aims: (i) To describe to what extent patients aged 50 and older who are relatively stable or in good health are thinking about the end of life (EOL) and willing to discuss this with their family physician (FP) and (ii) to explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice., Methods: A cross-sectional study was conducted in a diverse sample of 289 patients aged ≥50 years in family practice in Flanders, Belgium. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore their preferences and views on ACP in family practice., Results: The majority (69.8%) of patients had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). The qualitative interviews revealed that when thinking about the EOL, a number of themes captured the thoughts of people according to both patients and FPs: (i) becoming care dependent, (ii) physical and mental deterioration, (iii) dying alone and (iv) having paperwork in order. However, on the basis of patients' ideas and FPs' experiences in practice, a difference was noticed between them when it comes to identifying the themes as triggers for initiating ACP discussions., Conclusion: Although patients are willing to discuss the EOL with their FPs, patients and FPs identified different themes as triggers to initiate discussions about the EOL. The variation in triggers could lead to missed opportunities to engage in ACP in a timely manner.

Objectives: To explore how GPs conceptualise advance care planning (ACP), based on their experiences with ACP in their practice., Methods: Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method., Results: Four overarching themes in the conceptualisations of ACP were discerned: (1) the organisation of professional care required to meet patients' needs, (2) the process of preparing for death and discussing palliative care options, (3) the discussion of care goals and treatment decisions, (4) the completion of advance directives. Within these themes, ACP was both conceptualised in terms of content of ACP and/or in terms of tasks for the GP. A specific task that was mentioned throughout the discussion of the four different themes was (5) the task of actively initiating ACP by the GP versus passively waiting for patients' initiation., Conclusions: This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. A shared conceptualisation and agreement on the purpose and goals of ACP is needed to ensure successful implementation, as well as a systematic integration of ACP in routine practice that could lead to a better uptake of all the important elements of ACP.

Background: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice., Methods: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels., Results: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions., Conclusion: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study.

Background: The long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure., Objective: To identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia., Method: Five focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis., Results: THREE TYPES OF BARRIERS WERE DISTINGUISHED: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP., Conclusion: The results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions.

Objective: The aim of this systematic review is to identify the perceived factors hindering or facilitating GPs in engaging in advance care planning (ACP) with their patients about care at the end of life., Design: Studies from 1990 to 2011 were found in four electronic databases (PubMed, CINAHL, EMBASE, PsycINFO); by contacting first authors of included studies and key experts; and searching through relevant journals and reference lists. Studies were screened, graded for quality, and analysed independently by two authors; those reporting the perception by GPs of barriers and facilitators to engagement in ACP were included., Results: Eight qualitative studies and seven cross-sectional studies were included for data extraction. All barriers and facilitators identified were categorized as GP characteristics, perceived patient factors, or health care system characteristics. Stronger evidence was found for the following barriers: lack of skills to deal with patients' vague requests, difficulties with defining the right moment, the attitude that it is the patient who should initiate ACP, and fear of depriving patients of hope. Stronger evidence was found for the following facilitators: accumulated skills, the ability to foresee health problems in the future, skills to respond to a patient's initiation of ACP, personal convictions about who to involve in ACP, and a longstanding patient-GP relationship and the home setting., Conclusion: Initiation of ACP in general practice may be improved by targeting the GPs' skills, attitudes, and beliefs but changes in health care organization and financing could also contribute.

Background: Research about advance care planning (ACP) has often targeted those with serious illness and limited prognosis, thereby not addressing the preferences of healthy adults or adults with a stable condition.Aims: (i) To describe to what extent patients aged 50 and older who are relatively stable or in good health are thinking about the end of life (EOL) and willing to discuss this with their family physician (FP) and (ii) to explore whether patients and FPs indicate the same topics as triggers for ACP discussions in family practice.Methods: A cross-sectional study was conducted in a diverse sample of 289 patients aged ≥50 years in family practice in Flanders, Belgium. Subsequently, semi-structured interviews were conducted with patients (n = 5) and FPs (n = 5) to explore their preferences and views on ACP in family practice.Results: The majority (69.8%) of patients had thought about the EOL and would appreciate it if their FP would initiate a conversation about this (75.9%). The qualitative interviews revealed that when thinking about the EOL, a number of themes captured the thoughts of people according to both patients and FPs: (i) becoming care dependent, (ii) physical and mental deterioration, (iii) dying alone and (iv) having paperwork in order. However, on the basis of patients' ideas and FPs' experiences in practice, a difference was noticed between them when it comes to identifying the themes as triggers for initiating ACP discussions.Conclusion: Although patients are willing to discuss the EOL with their FPs, patients and FPs identified different themes as triggers to initiate discussions about the EOL. The variation in triggers could lead to missed opportunities to engage in ACP in a timely manner. [ABSTRACT FROM AUTHOR]