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Willingness to support neighbours practically or emotionally : a cross-sectional survey among the general public Ghent University Vrije Universiteit Brussel

Bert Quintiens, Tinne Smets, Kenneth Chambaere, Lieve Van den Block, Luc Deliens, Joachim Cohen
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 ...

Views on advance care planning of family members of older adults with Turkish and Moroccan backgrounds : an exploratory interview study Ghent University Vrije Universiteit Brussel

Hakki Demirkapu, Wael Edally, Aline De Vleminck, Lieve Van den Block, Stéphanie De Maesschalck, Dirk Devroey
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, ...

Relatives' needs in terms of bereavement care throughout euthanasia processes : a qualitative study Ghent University Vrije Universiteit Brussel

Charlotte Boven, Let Dillen, Liesbeth Van Humbeeck, Lieve Van den Block, Ruth Piers, Nele Van Den Noortgate
AimTo 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.DesignA phenomenological design was employed, utilising reflexive thematic analysis to examine interviews conducted with relatives (N = 19) and healthcare providers (N = 47).ResultsRelatives' needs throughout euthanasia ...

Evaluation of interactive web-based tools to stimulate reflection and communication about advance care planning with people with dementia and their family caregivers Ghent University KU Leuven Vrije Universiteit Brussel

Fanny Monnet, Lara Pivodic, Charless Dupont, Tinne Smets, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block
BackgroundPeople 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 ...

Usability of web-based tools designed for communication and decision-making in dementia : systematic review and design brief Ghent University Vrije Universiteit Brussel

Fanny Monnet, Michael P Craven, Charless Dupont, Lieve Van den Block, Lara Pivodic
Introduction: There is an increased number of web-based tools designed for people with dementia and their family caregivers and addressing communication and decision-making. The loss of cognitive functions associated with dementia can impact individuals ' experiences and use of web-based tools. There is a need for high quality and user-friendly web-based tools that support communication and decision-making for people with dementia and their ...

Investigating experiences of people with advanced breast or lung cancer in their natural context : protocol for an experience sampling study Ghent University Vrije Universiteit Brussel

Joran Geeraerts, Lara Pivodic, Kim De Nooijer, Eline Naert, Geert Crombez, Mark De Ridder, Lieve Van den Block
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 ...

Supporting early‐career dementia researchers : identifying support needs and ways forward via a European study Ghent University Vrije Universiteit Brussel

Charless Dupont, Joni Gilissen, Fania C. M. Dassen, Rita Maldonado Branco, Pascale Heins, Eithne Heffernan, Sara Laureen Bartels
INTRODUCTIONEarly-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs.METHODSAn iterative, explanatory sequential mixed-methods design was applied. ...

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 Ghent University Vrije Universiteit Brussel

Fanny Monnet, Ana Diaz, Dianne Gove, Charless Dupont, Lara Pivodic, Lieve Van den Block
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 ...