为患有局限性疾病儿童的父母和家庭提供支持：预先护理规划的影响

Q3 Nursing Evidence Based Nursing Pub Date : 2024-09-11 DOI:10.1136/ebnurs-2024-104127

Amy Moody, Kathy Lousie Stocks, Michael J Tatterton

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摘要

评论：Lyon, M. E., Fraser, J. L., Thompkins, J. D., et al (2024)。罕见病儿童的预先护理规划：一项试点 RCT。Pediatrics , 153(6), e2023064557. https://doi.org/10.1542/peds.2023-064557.#### 对研究和实践的影响婴儿、儿童和青少年（儿童）患罕见病往往会缩短生命，儿童可能需要持续的护理。Bösch 等人 1 报告说，美国三级医院中有 82% 的儿童患有罕见病。这项研究的目的是确定...

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Supporting parents and families of children with life-limiting conditions: the impact of advance care planning

Commentary on: Lyon, M. E., Fraser, J. L., Thompkins, J. D., et al (2024). Advance Care Planning for Children With Rare Diseases: A Pilot RCT. Pediatrics , 153(6), e2023064557. https://doi.org/10.1542/peds.2023-064557. ### Implications for research and practice Rare diseases in babies, children and young people (children) are often life-shortening, and children can require constant caregiving. Bösch et al 1 report that 82% of children in tertiary hospitals in the USA have a rare disease. This study was designed to establish the efficacy of the …

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来源期刊

Evidence Based Nursing Nursing-Fundamentals and Skills

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4.10

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期刊介绍： Evidence-Based Nursing surveys a wide range of international medical journals applying strict criteria for the quality and validity of research. Practising clinicians assess the clinical relevance of the best studies. The key details of these essential studies are presented in a succinct, informative abstract with an expert commentary on its clinical application. Published quarterly, Evidence-Based Nursing is designed to alert practising nurses to important and clinically relevant advances in treatment, diagnosis, aetiology, and prognosis. Published by the BMJ Publishing Group and the Royal College of Nursing Publishing Company, Evidence-Based Nursing selects and examines every aspect of the very best international nursing research for your practice.