Loseto-Gerritzen Esther Vera, McDermott Orii, Orrell Martin
Institute of Mental Health, Mental Health and Clinical Neuroscience, School of Medicine, University of Nottingham, Nottingham NG7 2TU, UK.
Behav Sci (Basel). 2024 Aug 26;14(9):746. doi: 10.3390/bs14090746.
This work aimed to develop a Best Practice Guidance on online peer support for people with young-onset dementia (YOD). The Best Practice Guidance was developed through a systematic literature review, focus groups, an online survey, and interviews and consultations with people with YOD and professionals. The Best Practice Guidance consists of two parts. Part 1 contains information for people with YOD about what online peer support entails, what to expect from it, and how to get involved. Part 2 is aimed at those who facilitate or moderate online peer support (professionals or people with lived experience) and includes guidelines on how to optimize online peer support for people with YOD. The Best Practice Guidance on online peer support provides (1) people with YOD with evidence-based, relevant, and accessible information about what online peer support entails and how it could help them, (2) providers and facilitators with guidelines on how to optimize online peer support for people with YOD, and (3) healthcare professionals with a concise and accessible tool for signposting. Future research is needed to implement and disseminate the Best Practice Guidance among dementia organizations and healthcare practices and should include rigorous studies on the implementation and sustainability of online peer support for people with YOD.
这项工作旨在制定一份针对早发性痴呆症（YOD）患者的在线同伴支持最佳实践指南。该最佳实践指南是通过系统的文献综述、焦点小组、在线调查以及与YOD患者和专业人士的访谈与磋商而制定的。最佳实践指南由两部分组成。第一部分包含针对YOD患者的信息，内容涉及在线同伴支持的内涵、从中可期待什么以及如何参与。第二部分针对那些促进或主持在线同伴支持的人员（专业人士或有实际经验的人），包括关于如何为YOD患者优化在线同伴支持的指南。在线同伴支持最佳实践指南为：（1）YOD患者提供基于证据、相关且易于获取的信息，说明在线同伴支持的内涵以及它如何能帮助他们；（2）为提供者和促进者提供关于如何为YOD患者优化在线同伴支持的指南；（3）为医疗保健专业人员提供一个简洁且易于获取的指引工具。未来需要开展研究，以便在痴呆症组织和医疗实践中实施和传播该最佳实践指南，并且应该包括对YOD患者在线同伴支持的实施和可持续性的严格研究。
