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J Appl Res Intellect Disabil. 2021;34(6):1538\u201348.","journal-title":"J Appl Res Intellect Disabil"}],"container-title":["BMC Palliative Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-026-02253-3","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-026-02253-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12904-026-02253-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,22]],"date-time":"2026-10-22T05:02:43Z","timestamp":1792645363000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12904-026-02253-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,28]]},"references-count":52,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["2253"],"URL":"https:\/\/doi.org\/10.1186\/s12904-026-02253-3","relation":{},"ISSN":["1472-684X"],"issn-type":[{"value":"1472-684X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,28]]},"assertion":[{"value":"27 May 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 July 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 July 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"According to Dutch law (Medical Research Involving Human Subjects Act, WMO), this study is not subject to extended ethical review, as participants are not exposed to medical interventions and they are also not subordinated to behavioural rules.However, the study was reviewed and approved as non-WMO-study by the ethics committee of Rotterdam University of Applied Sciences (approval number 20240702). All participants will receive written information about the study\u2019s objectives, the nature of their participation, and their rights, including the ability to withdraw at any time without consequences. This information will be distributed via the participating care organizations. The researcher will not be in direct contact with the participant.Before participation, informed consent will be obtained from either the participant (if capable to decide) and\/or their legal representative, in accordance with ethical guidelines. By signing the consent form, the participants and\/or their representatives confirm that:1. They agree that symptom questionnaires (USD-z) will be completed at regular intervals (monthly in the palliative phase, weekly in the terminal phase, and daily in the dying phase) until either the participant's death or the termination of data collection;2. They understand the information provided and have had the opportunity to ask questions;3. They are informed that the study is observational in nature and is not intended to alter treatment or care. Participation involves only symptom monitoring, interviews with professionals, and analysis of medical records;4. In case the legal representative provides consent, (s)he did so on behalf of the participant but does not personally participate in the study.All collected data will be pseudonymised. Participants\u2019 names and identifying details will be replaced with a unique code, which will be securely stored in an encrypted database. The password-protected file will be accessible only by the research team, ensuring compliance with General Data Protection Regulation (GDPR) standards. In all future publications and reports, only these codes will be used to protect participants' anonymity and privacy.","order":1,"name":"Ethics","label":"Ethics approval and consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","label":"Consent for publication","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"319"}}