Lieve Van den Block

Vrije Universiteit Brussel | VUB · End-of-Life Care Research Group (ZRL)

Objective The primary study aims were to evaluate the implementation, mechanisms and context of a timely short-term specialised palliative care intervention for older people with frailty (Frailty+ intervention) as well as to assess the feasibility of a randomised controlled trial to evaluate Frailty+. Our secondary aim was to describe any prelimina...

Objectives The End‐of‐Life Dementia—Comfort Assessment in Dying (EOLD‐CAD) scale is one of the few outcome instruments designed to capture symptom burden and well‐being among nursing home residents with dementia; however, psychometric evaluations of the EOLD‐CAD are limited. Although the instrument is often used to assess outcomes prospectively, it...

Planning for future medical care, referred to as Advance Care Planning (ACP), has evolved to a focus on conversations that explore values and preferences in a broad sense. It is unclear how this conceptualization has been adopted internationally, given diverse practices. Therefore, we examined how experts from across the globe define ACP and whethe...

Background Experience sampling methods typically involve multiple self-report assessments per day over consecutive days. Unlike traditional patient-reported outcome measures or interviews, such methods offer the possibility to capture the temporal fluctuations of experiences in daily environments, making them valuable for studying the daily lives o...

Background Older people who die from serious chronic disease typically experience long periods (months or years) of illness and complex fluctuations in their physical health and in their social, psychological and existential well-being. Our understanding of these end-of-life trajectories is very limited, focuses predominantly on physical function a...

Background Cancer navigation programs aim to support, educate, and empower patients and families, addressing barriers to diagnostics, treatment, and care. Navigators engage with people to ensure timely access to services and resources. While promising for older people with cancer, these programs are scarce in Europe, and research on their effective...

Background Navigation interventions could support, educate and empower older people with cancer and/or their family caregivers by addressing barriers and ensuring timely access to needed services and resources throughout the continuum of supportive, palliative and end-of-life care. Objectives European Union (EU) NAVIGATE is an interdisciplinary an...

Background We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff’s self-efficacy, it did not change their knowledge about advance care planning. Aim To describe the level of implementation, mechanisms of impact, and contextual factors. Design Process ev...

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 plannin...

Highlights • We need user-friendly communication and decision-making web-tools in dementia care. • Appearance, navigation, content delivery and support are important for usability. • We provide 11 recommendations to improve web-based tools for people with dementia. • Future research should address providing tailored support to enhance usability....

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 an...

BACKGROUND Web-based tools have gained popularity to inform and empower individuals in advance care planning. We have developed an interactive website tailored to the unique needs of people with dementia and their families to support advance care planning. This website aims to break away from the rigid pathways shown in other tools that support adv...

Background Web-based tools have gained popularity to inform and empower individuals in advance care planning. We have developed an interactive website tailored to the unique needs of people with dementia and their families to support advance care planning. This website aims to break away from the rigid pathways shown in other tools that support adv...

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 a...

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, an...

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 rela...

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,...

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-ca...

BACKGROUND Experience sampling methods (ESM), self-report methods that typically utilize multiple assessments per day, can provide detailed knowledge of cancer patients’ daily experiences, potentially informing oncological care. The use of ESM among people with advanced cancer is limited and no validated ESM questionnaires currently exist in oncolo...

Background The experience sampling method (ESM), a self-report method that typically uses multiple assessments per day, can provide detailed knowledge of the daily experiences of people with cancer, potentially informing oncological care. The use of the ESM among people with advanced cancer is limited, and no validated ESM questionnaires have been...

Introduction:Previous research showed that people with young-onset dementia and their family caregivers spontaneously addressed the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may provide innovative insights to inform the evolving physician assisted dying l...

Objective:INDUCT (Interdisciplinary Network for Dementia Using Current Technology), and DISTINCT (Dementia Inter-sectorial strategy for training and innovation network for current technology) are two Marie Sklodowska-Curie funded International Training Networks that aimed to develop a multi-disciplinary, inter-sectorial educational research framewo...

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 w...

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, ongo...

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...

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 responden...

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...

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. Howe...

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...

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 re...

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. Publis...

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 consideratio...

BACKGROUND Electronic daily intensive longitudinal methods offer a powerful tool for capturing the daily experiences of individuals. However, its feasibility, effectiveness, and optimal methodological approaches for studying or monitoring experiences of oncology patients remain uncertain. OBJECTIVE This scoping review aimed to describe to what ext...

Background Intensive longitudinal methods offer a powerful tool for capturing daily experiences of individuals. However, its feasibility, effectiveness, and optimal methodological approaches for studying or monitoring experiences of oncology patients remain uncertain. Objective This scoping review aims to describe to what extent intensive longitud...

Background The European Association for Palliative Care (EAPC) defines advance care planning (ACP) as a process enabling individuals with decisional capacity to define goals and preferences for future medical treatment and care, discuss these with family and health‐care providers, and record and review them if appropriate. There are concerns that t...

p> As part of the Palliative Sedation project funded by the European Union’s Horizon 2020 programme (grant no. 825700) entitled Palliative Sedation (SC1-BHC-23-2018 A) ( https://palliativesedation.eu ), the aim of our study was to revise and update the 2009 European Association for Palliative Care (EAPC) framework on palliative sedation. For this...

p> As part of the Palliative Sedation project funded by the European Union’s Horizon 2020 programme (grant no. 825700) entitled Palliative Sedation (SC1-BHC-23-2018 A) ( https://palliativesedation.eu ), the aim of our study was to revise and update the 2009 European Association for Palliative Care (EAPC) framework on palliative sedation. For this...

Background Advance care planning (ACP) is rare among older adults with a migration background because of social, cultural, and religious reasons. This study aimed to explore ACP-related knowledge, experience, views, facilitators, and barriers among older adults of Moroccan origin in Belgium. Methods Semi-structured interviews were conducted in Dar...

Background Advance care planning (ACP) is rare among older adults with a migration background because of social, cultural, and religious reasons. This study aimed to explore ACP-related knowledge and perspectives among older adults with a Turkish background and palliative care needs living in Belgium. Methods Semi-structured interviews were conduc...

Background Available advance care planning (ACP) definitions are for individuals with decision-making capacity. We aimed to conceptualise ACP in dementia in terms of its definition and issues that deserve particular attention. Methods Delphi study in which a task force of the European Association for Palliative Care (EAPC) prepared content based o...

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,...

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...

This article is open access, and can be downloaded for free on the website of the International Journal of Nursing Studies. https://doi.org/10.1016/j.ijnurstu.2023.104450

Introduction Despite the relevance of advance care planning (ACP) for people with dementia, its uptake in this population is particularly low. Several challenges for ACP in dementia have been identified from physicians’ perspectives. However, the literature available mainly includes general practitioners and focuses exclusively on the context of la...

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...

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 ca...

Aim: This study aimed to examine the healthcare professionals' perceptions after implementing the "PACE Steps to Success" program in the French-speaking part of Switzerland. Design: A qualitative descriptive study. Methods: Thematic analysis of semi-structured face-to-face and group interviews with health professionals, PACE coordinators, and...

Background Pet robots are gaining momentum as a technology-based intervention to support the psychosocial wellbeing of people with dementia. Current research suggests that they can reduce agitation, improve mood and social engagement. The implementation of pet robots in care for persons with dementia raises several ethical debates. However, there i...

Planning for future medical treatment, and care, referred to as advance care planning (ACP), has evolved to a focus on conversations that explore values and preferences in a broad sense. Given diverse practices internationally, we examined how international experts would define ACP themselves and whether this differs by medical profession. In an ex...

Background/Objectives Compassionate Cities are social ecology approaches that apply a set of actions, targeting a broad range of stakeholders, with the intention of renormalising caring, dying, loss and grieving in everyday life. While several initiatives have been described in the literature, a rigorous evaluation of their processes and outcomes i...

Objective: To gain insight into the advance care planning (ACP) content provided on dementia associations' websites in Europe. Methods: We conducted a content analysis of dementia associations' websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions. Resul...

Background Public health tools like the Go Wish card game from the US, have been found useful to support people in reflecting on their end-of-life preferences, but a cultural adaptation is essential for their success. In the present study, we explore the necessary cultural adaptations to the Go Wish cards by applying an extensive, systematic, and c...

Unlabelled: The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability...

Medical assistance in dying (MAID) is legal in Canada but cannot be accessed through an advance request. Some data suggest that informal care-givers of persons with dementia support the legalisation of advance requests for MAID. Opponents argue that care-givers' support is due to society's failure to address their well-documented burden and unmet n...

Background Little is known about the nature and intensity of palliative care needs of hospitalised older people. We aimed to describe the palliative care symptoms, concerns, and well-being of older people with frailty and complex care needs upon discharge from hospital to home, and to examine the relationship between palliative care symptoms and co...

Background Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention. Aims To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advan...

Even though many older people will live longer in good health, many will also be confronted with frailty, multi-morbidity, cognitive decline, disability and serious illnesses in the last years of their life. The end-of-life trajectories of frail older people have a major impact on the care that needs to be provided. Older people develop different p...

Objectives Only a few studies have investigated the quality of end-of-life care provided to nursing home residents with dementia as perceived by their relatives. We aim to investigate the quality of end-of-life care as perceived by relatives and to investigate which characteristics of nursing home residents with dementia, their relatives and the ca...

Background Broad consensus exists on the relevance of advance care planning in dementia. Although people with young-onset dementia and their family are hypothesized to have distinct needs and preferences in this area, they are hardly ever included in studies. Aim We aim to explore the experiences with and views on advance care planning of people w...

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. H...

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 system...

Background New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lack...

Background Area-Based Compassionate Communities are community public health interventions which focus on the role of the community in palliative care provision. They apply a set of actions based on the Ottawa Charter for Health Promotion which aims to increase people’s control over their health. Aim To review and compare Area-Based Compassionate C...