Academic Bibliography
https://biblio.ugent.be/
Ghent University Academic Bibliography2000-01-01T00:00+00:001monthlyInvestigating experiences of people with advanced breast or lung cancer in their natural context : protocol for an experience sampling study
https://biblio.ugent.be/publication/01HRF39VJE5GFMVPCD013SS7K6
Geeraerts, JoranPivodic, LaraDe Nooijer, KimNaert, ElineCrombez, GeertDe Ridder, MarkVan den Block, Lieve2024Introduction 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.application/pdfhttps://biblio.ugent.be/publication/01HRF39VJE5GFMVPCD013SS7K6http://hdl.handle.net/1854/LU-01HRF39VJE5GFMVPCD013SS7K6http://doi.org/10.1136/bmjopen-2023-075752https://biblio.ugent.be/publication/01HRF39VJE5GFMVPCD013SS7K6/file/01HRF3AHDR5AFBJ1TB3FEDDNR0engCreative Commons Attribution-NonCommercial 4.0 International Public License (CC BY-NC 4.0)info:eu-repo/semantics/openAccessBMJ OPENISSN: 2044-6055Medicine and Health SciencesInvestigating experiences of people with advanced breast or lung cancer in their natural context : protocol for an experience sampling studyjournalArticleinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionDiscomfort with suffering and dying, a cross-sectional survey of the general public
https://biblio.ugent.be/publication/01HQX4G8S46VKFW5XZDCA8FHK4
Quintiens, BertSmets, TinneChambaere, KennethVan den Block, LieveDeliens, LucSallnow, LibbyCohen, Joachim2023Context. 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. J Pain Symptom Manage 2023;66:529-540. (c) 2023 The Authors. Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).application/pdfhttps://biblio.ugent.be/publication/01HQX4G8S46VKFW5XZDCA8FHK4http://hdl.handle.net/1854/LU-01HQX4G8S46VKFW5XZDCA8FHK4http://doi.org/10.1016/j.jpainsymman.2023.07.003https://biblio.ugent.be/publication/01HQX4G8S46VKFW5XZDCA8FHK4/file/01HQX4MXY18XYR2SRB74AVN253engElsevier BVCreative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Public License (CC BY-NC-ND 4.0)info:eu-repo/semantics/openAccessJOURNAL OF PAIN AND SYMPTOM MANAGEMENTISSN: 0885-3924ISSN: 1873-6513Medicine and Health SciencesAnesthesiology and Pain MedicineNeurology (clinical)General Nursingpublic healthdeath discomfortend -of -lifePalliative careDiscomfort with suffering and dying, a cross-sectional survey of the general publicjournalArticleinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionThe perspectives of people with dementia and their supporters on advance care planning : a qualitative study with the European Working Group of People with Dementia
https://biblio.ugent.be/publication/01HRF2QFN7PPD580EPF7F3EB6J
Monnet, FannyDiaz, AnaGove, DianneDupont, CharlessPivodic, LaraVan den Block, Lieve2024Background: 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.application/pdfhttps://biblio.ugent.be/publication/01HRF2QFN7PPD580EPF7F3EB6Jhttp://hdl.handle.net/1854/LU-01HRF2QFN7PPD580EPF7F3EB6Jhttp://doi.org/10.1177/02692163231219915https://biblio.ugent.be/publication/01HRF2QFN7PPD580EPF7F3EB6J/file/01HRF30PHB23J4VTEVH3659R5MengSAGE PublicationsCreative Commons Attribution-NonCommercial 4.0 International Public License (CC BY-NC 4.0)info:eu-repo/semantics/closedAccessPALLIATIVE MEDICINEISSN: 0269-2163ISSN: 1477-030XMedicine and Health SciencesAnesthesiology and Pain MedicineGeneral Medicinequalitative studyfamily caregiversdementiaAdvance care planningThe perspectives of people with dementia and their supporters on advance care planning : a qualitative study with the European Working Group of People with DementiajournalArticleinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionAdvance care planning website for people with dementia and their family caregivers : protocol for a development and usability study
https://biblio.ugent.be/publication/01HPNY4A7N4WMXTNTMETA5S3Q3
Monnet, FannyDupont, Charless Smets, TinneDe Vleminck, Aline Van Audenhove, ChantalVan den Block, LievePivodic, Lara2023Background: 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.application/pdfhttps://biblio.ugent.be/publication/01HPNY4A7N4WMXTNTMETA5S3Q3http://hdl.handle.net/1854/LU-01HPNY4A7N4WMXTNTMETA5S3Q3http://doi.org/10.2196/46935https://biblio.ugent.be/publication/01HPNY4A7N4WMXTNTMETA5S3Q3/file/01HRCE5J6GB2SV5NES8R9AFMDGengJMIR Publications, IncCreative Commons Attribution 4.0 International Public License (CC-BY 4.0)info:eu-repo/semantics/openAccessJMIR RESEARCH PROTOCOLSISSN: 1929-0748Medicine and Health SciencesSocial SciencesUSER-CENTERED DESIGNEUROPEAN ASSOCIATIONDEFINITIONRECOMMENDATIONSDELPHIVIEWSadvance care planningpeople with dementiatechnologydevelopmentusability testingdementiacaregiverweb-based toolsdigital healthuser-centered approachAdvance care planning website for people with dementia and their family caregivers : protocol for a development and usability studyjournalArticleinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionHow compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and loss
https://biblio.ugent.be/publication/01HP6ZEH7V916Q5B6706ARM7JC
D'Eer, LouiseChambaere, KennethVan den Block, LieveDury, SarahSallnow, LibbyDeliens, LucSmets, TinneCohen, Joachim2024We 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 (beta = 0.100; CI = 0.003-0.040), previous experiences with serious illness, death, and loss (beta = 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.application/pdfhttps://biblio.ugent.be/publication/01HP6ZEH7V916Q5B6706ARM7JChttp://hdl.handle.net/1854/LU-01HP6ZEH7V916Q5B6706ARM7JChttp://doi.org/10.1080/07481187.2023.2283449https://biblio.ugent.be/publication/01HP6ZEH7V916Q5B6706ARM7JC/file/01HP6ZFQJ437JES38WSG5CJ5GJengInforma UK LimitedCreative Commons Attribution-NonCommercial-NoDerivatives 4.0 International Public License (CC BY-NC-ND 4.0)info:eu-repo/semantics/openAccessDEATH STUDIESISSN: 0748-1187ISSN: 1091-7683Medicine and Health SciencesSocial SciencesArts and Humanities (miscellaneous)Clinical PsychologyDevelopmental and Educational Psychologyinformal participationneighborhood participationcompassionate communitiespalliative carePublic healthHow compassionate is your neighborhood? Results of a cross-sectional survey on neighborhood participation regarding serious illness, death, and lossjournalArticleinfo:eu-repo/semantics/articleinfo:eu-repo/semantics/acceptedVersion