Willingness to support neighbours practically or emotionally: a cross-sectional survey among the general public.

Background: Wider social networks are increasingly recognized for supporting people with care needs. Health-promoting initiatives around the end of life aim to foster these social connections but currently provide little insight into how willing people are to help neighbours facing support needs. Objectives: This study describes how willing people are to help neighbours who need support practically or emotionally, whether there is a difference in willingness depending on the type of support needed and what determines this willingness. Design: We applied a cross-sectional survey design. Methods: We distributed 4400 questionnaires to a random sample of people aged >15 across four municipalities in Flanders, Belgium. These surveys included attitudinal and experiential questions related to serious illness, caregiving and dying. Respondents rated their willingness (scale of 1-5) to provide support to different neighbours in hypothetical scenarios: (1) an older person in need of assistance and (2) a caregiver of a dying partner. Results: A total of 2008 questionnaires were returned (45.6%). The average willingness to support neighbours was 3.41 (case 1) and 3.85 (case 2). Helping with groceries scored highest; cooking and keeping company scored lowest. Factors associated with higher willingness included an optimistic outlook about receiving support from others, family caregiving experience and prior volunteering around serious illness or dying. Conclusion: People are generally willing to support their neighbours who need help practically or emotionally, especially when they have prior experience with illness, death or dying and when they felt supported by different groups of people. Community-based models that build support around people with care needs could explore to what extent this willingness translates into durable community support. Initiatives promoting social connection and cohesion around serious illness, caregiving and dying may harness this potential through experiential learning.

Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Relatives' needs in terms of bereavement care throughout euthanasia processes: A qualitative study.

AIM: To explore relatives' needs in terms of bereavement care during euthanasia processes, how healthcare providers respond to these needs, and the degree of commonality between relatives' and healthcare providers' reports. DESIGN: A phenomenological design was employed, utilising reflexive thematic analysis to examine interviews conducted with relatives (N = 19) and healthcare providers (N = 47). RESULTS: Relatives' needs throughout euthanasia processes are presented in five main themes and several subthemes, with similar findings between both sets of participants. Although relatives infrequently communicated their needs explicitly to healthcare providers, they appreciated it when staff proactively met their needs. Healthcare providers aimed to assist with the relatives' grief process by tending to their specific needs. However, aftercare was not consistently offered, but relatives did not have high expectations for professional follow-up care. CONCLUSION: Our research offers important directions for healthcare professionals, empowering them to provide needs-based bereavement care during euthanasia processes. Moreover, it emphasises the importance of recognising the unique needs of relatives and proactively addressing them in the period before the loss to positively contribute to relatives' grief process. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Insights into relatives' needs in the context of euthanasia. Good practices on how healthcare providers can attend to relatives' needs before, during and after the loss IMPACT: Current literature and guidelines on needs-based bereavement care in the context of euthanasia and, more generally, assisted dying, are limited. These findings provide concrete directions for practice in supporting (nearly) bereaved relatives in the context of euthanasia, potentially mitigating adverse health outcomes. REPORTING METHOD: Standards for Reporting Qualitative Research (SRQR checklist). PATIENT OR PUBLIC CONTRIBUTION: Relatives of deceased cancer patients were involved in the conduct of the study.

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

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.

Social connection and end-of-life outcomes among older people in 19 countries: a population-based longitudinal study.

BACKGROUND: Social connection is a key determinant of health, but its role in shaping end-of-life outcomes is poorly understood. We examined changes in structure, function, and quality components of social connection in older people's last years of life, and the extent to which social connection predicts end-of-life outcomes (ie, symptoms, health-care utilisation, and place of death). METHODS: This study used longitudinal data of representative samples from across 18 European countries and Israel in the Survey of Health, Ageing, and Retirement in Europe (SHARE), the largest European cohort study of people aged 50 years or older. We included deceased participants of waves 4 and 6 (which contained social network modules) for whom a proxy provided an end-of-life interview. We did paired sample t-tests (for continuous variables), Wilcoxon signed-rank tests (for ordinal variables), and McNemar's tests (for non-ordinal categorical variables) to assess changes in structure, function, and quality components of social connection between waves 4 and 6. To examine social connection as a predictor of end-of-life outcomes, we used social connection data from wave 6 core interviews and end-of-life interviews from wave 7, conducted with a proxy respondent covering the deceased participant's last year of life. End-of-life outcomes included symptoms (pain, breathlessness, and anxiety or sadness) in the last month of life, health-care utilisation in the last year of life, and place of death. We conducted a mixed-effects logistic regression analysis per social connection measure, for each end-of-life outcome. FINDINGS: Data were collected in 2011-12 for wave 4, 2015-16 for wave 6, and 2017-18 for wave 7. We studied 3356 individuals (mean age at death was 79·7 years [SD 10·2]), with interviews conducted, on average, 4·6 (1·2) years (wave 4) and 1·1 (0·7) years (wave 6) before death. From wave 4 to wave 6, the following changes in social connection were observed: proportion of married or partnered participants (from 1406 [60·9%] of 2310 to 1438 [57·1%] of 2518; p<0·0001), receiving personal care or practical help (from 781 [37·2%] of 2099 to 1334 [53·1%] of 2512; p<0·0001), loneliness (from mean 1·4 [SD 0·5] to 1·5 [0·6]; p<0·0001; scale 1-3), satisfaction with social network (from 8·8 [1·67] to 8·7 [1·7]; p=0·037; scale 0-10), and emotional closeness to social network (eg, from 1883 [88·8%] of 2121 to 1710 [91·3%] of 1872 participants who indicated being either very close or extremely close to social network members; p<0·0001). Higher levels of loneliness at wave 6 predicted a greater likelihood of experiencing symptoms in the last month of life (odds ratio range across symptoms: 1·29 [95% CI 1·08-1·55] to 1·58 [1·32-1·89]). Being married (1·32 [1·03-1·68]) or receiving personal care or practical help (1·25 [1·04-1·49]) predicted death in hospital. INTERPRETATION: Social connection undergoes multifaceted changes towards older people's end of life, countering prevalent ideas of generally declining social trajectories. Loneliness in the final months of life might be a risk factor for end-of-life symptoms. Further research is needed to substantiate a causal relationship and to identify underpinning mechanisms, which could inform screening and prevention measures. FUNDING: Research Foundation-Flanders and European Union.

Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study.

BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

Investigating experiences of people with advanced breast or lung cancer in their natural context: protocol for an experience sampling study.

INTRODUCTION: People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people's natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and evaluate the feasibility and clinical utility of a validated ESM and use it to explore everyday experiences of people living with advanced breast or lung cancer. METHODS AND ANALYSIS: In step 1, we will optimise our ESM method by pretesting it through usability interviews and a pilot ESM study. In step 2, we will evaluate and use the ESM method through an observational ESM study to investigate the daily experiences of people with advanced breast or lung cancer. Step 2 also includes interviews with healthcare professionals to determine the clinical utility of ESM in oncology. Participants will complete a digital questionnaire ten times per day, measuring momentary experiences in the physical, psychological, social, spiritual-existential domains and context. Multilevel regression models will analyse fluctuations and temporal relations among measured experiences and context. Analyses also include evaluation of compliance and participation rates. We will apply content analysis to the usability interviews and follow-up interviews of the pilot ESM study. ETHICS AND DISSEMINATION: We obtained approval from the ethics committees of the University Hospitals of Brussels (BUN: 1432023000043) and Ghent (ONZ-2023-0136). Results will be published in open-access, peer-reviewed journals and presented at conferences. If ESM appears feasible in this population, it could offer new insights into the daily experiences and help optimise support for people with advanced cancer.

The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia.

BACKGROUND: Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia. AIM: To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition. DESIGN: An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis. SETTING/PARTICIPANTS: We included 12 people with dementia and 9 supporters. RESULTS: Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia. CONCLUSIONS: The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the person's capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals.

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.

How compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and loss.

We conducted a cross-sectional survey measuring the extent and nature of neighborhood participation regarding serious illness, death and loss and the factors that are associated with it. We distributed the survey to 2324 adult citizens in two neighborhoods in Flanders, Belgium, to which 714 citizens responded (response rate 30.7%). Of the respondents, 42.4% participated in at least one action in their neighborhood around serious illness, death, or loss, for 30.8% of them this participation was sporadic. Most of the respondents participated by helping neighbors (32.4%) or by volunteering (10.3%). We found a positive association between perceived neighborhood social cohesion (ß = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (ß = 0.158; CI = 0.204-0.586) and neighborhood participation around serious illness, death and loss. Future research should investigate strategies on how to move from death literacy developed through illness, caregiving and bereavement experiences to neighborhood participation around these topics.

Relatives' Experiences of Being Involved in Assisted Dying: A Qualitative Study.

Recent literature demonstrates an interdependence between relatives and healthcare providers throughout euthanasia processes. Yet, current guidelines and literature scarcely specify the interactions between healthcare providers and bereaved relatives. The aim of this work consisted of providing an insight into bereaved relatives' experiences (1) of being involved in euthanasia processes and (2) of their interactions with healthcare providers before, during, and after the euthanasia. The research process was guided by the principles of constructivist grounded theory. Nineteen Dutch-speaking bereaved relatives of oncological patients, who received euthanasia at home or in a hospital less than 24 months ago, participated via semi-structured interviews. These interviews were conducted between May 2021 and June 2022. Due to the intensity of euthanasia processes, relatives wanted to be involved as early as possible, in order to receive time, space, and access to professionals' support whilst preparing themselves for the upcoming loss of a family member with cancer. Being at peace with the euthanasia request facilitated taking a supportive attitude, subsequently aiding in achieving a serene atmosphere. A serene atmosphere facilitated relatives' grief process because it helped them in creating and preserving good memories. Relatives appreciated support from healthcare providers, as long as overinvolvement on their part was not occurring. This study advocates for a relational approach in the context of euthanasia and provides useful complements to the existing euthanasia guidelines.

Advance care planning among older adults in Belgium with Turkish backgrounds and palliative care needs: A qualitative interview study.

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.

Evaluating an advance care planning website for people with dementia and their caregivers: Protocol for a mixed method study.

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.

Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study.

BACKGROUND: Web-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. OBJECTIVE: This 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. METHODS: The 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. RESULTS: This 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. CONCLUSIONS: The 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.

Discomfort With Suffering and Dying, a Cross-Sectional Survey of the General Public.

CONTEXT: Death and the process of dying have become increasingly medicalized and professionalized. The associated cultural estrangement from death may affect how comfortable we feel about death and dying. This study examines the general public's discomfort with another person's suffering and dying, and whether these feelings are associated with specific personal characteristics or experiences. OBJECTIVES: Cross-sectional survey in a random sample of people aged 16 or older in four municipalities in Flanders, Belgium (N=4400). We used the self-developed construct Discomfort with someone's suffering and dying. A directed acyclic graph guided the development of a multivariable regression model which explored the effect of different variables on the main outcome measure. RESULTS: A total of 2008 completed questionnaires were returned (response rate: 45.6%). Average discomfort with someone's suffering and dying was 3.74 (SD = 0.89). Being female or currently mourning a loss were associated with more discomfort. Not being religious, having better knowledge about palliative care, having worked in healthcare, having been with someone else at the time of their death and having been culturally exposed to death and dying were associated with less discomfort. CONCLUSION: A considerable level of discomfort is present within the general public about the suffering and dying of others and this may increase social stigma and a tendency to avoid seriously ill people and their social surroundings. Our findings suggest that interventions may help shift this societal discomfort if they incorporate a focus on cultural and experiential exposure and increasing knowledge about palliative care.

People with young-onset dementia and their family caregivers discussing euthanasia: A qualitative analysis of their considerations.

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.

Advance care planning among older adults of Moroccan origin: An interview-based study.

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.

Civic Engagement in Neighbourhoods regarding serious illness, death and loss (CEIN): a study protocol for a convergent-parallel mixed-methods process and outcome evaluation that balances control and flexibility.

Background: New public health approaches in palliative care attribute an active role to civic society in providing care for those who are seriously ill, caring, or bereaved. Accordingly, Civic Engagement In Neighbourhoods regarding serious illness, dying and loss (CEIN) are emerging worldwide. However, study protocols that advise on how to evaluate the impact and complex social change processes underlying these civic engagement initiatives are lacking. Objectives: The main objective of this study is to describe the study protocol for the evaluation of civic engagement initiatives in serious illness, dying, and loss in two neighbourhoods in Flanders, Belgium. Design: A convergent-parallel mixed-method process and outcome evaluation for the CEIN study. Methods & analysis: We look at the evaluation of CEIN through a critical realist lens, thereby including the social, political, and economic determinants of social change in CEIN, the mechanisms to achieve this social change, the outcomes, and the mutual connection between these three aspects. We will conduct a convergent-parallel mixed-method process and outcome evaluation in which qualitative (i.e. observations, interviews, group discussions, and ego network mapping) and quantitative data (i.e. a pre-post survey) are simultaneously but separately collected and analysed and in the last stage combined by narrative synthesis. Discussion: This protocol illustrates the difficulty of operationalising the desired long-term impact of social changes regarding serious illness, dying, and loss into more manageable outcomes. We recommend a well-cogitated logic model that connects the outcomes of the study to its potential actions. Applying this protocol in practice is a constant exercise between providing sufficient flexibility to meet feasibility, desirability, and context-specific needs in the CEIN study and providing sufficient guidelines to structure and control the evaluation process.