对被诊断为早发性痴呆的父母的儿童和青少年需求的系统回顾:告知护理干预。

IF 3.4 3区 医学 Q1 NURSING
T Sobers,E Wolverson,H Gardner,P Joddrell,M Walpert,A Pepper,K Harrison Dening
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引用次数: 0

摘要

目的:本研究的目的是了解父母患有早发性痴呆的儿童和青少年的需求,为护理模式的发展提供信息。父母被诊断为早发性痴呆的儿童和年轻人有一系列的需求,这些需求可能会随着他们的发育和成长阶段而改变。DESIGNSystematic审查。资料来源检索PsycInfo (1806-Jan 2025)、Medline (1996-Jan 2025)和CINAHL (1961-Jan 2025);搜索词是在与学术图书管理员协商后制定的。综述方法系统综述和荟萃分析的首选报告项目用于评估研究结果的可信度和适用性,混合方法评估工具用于评估质量。审查方案已在PROSPERO注册(CRD42024534104)。从文献中确定的需求与专科护理模式的活动和干预相匹配。结果共检索到223条记录,其中17条符合纳入/排除标准,绝大多数采用定性方法(N = 16)。采用主题综合方法分析数据,揭示了四个新兴主题:(1)寻找出路;(2)社会联系和同伴支持;(3)保护儿童和青少年;(4)实际支持,包括与教育相关的需求。确定的需求:知识和信息、情感支持、教育和发展的一致性、维持社会联系、身心健康、悲伤和损失,这些需求都与专科护士的角色相对应。结论:与老年护理人员相比,父母一方被诊断为早发性痴呆的儿童和青少年面临着独特的挑战。尽管人们越来越认识到他们的需求,但在国家痴呆症战略中往往忽视了这一人群。发展专科护士的角色是一个积极的步骤,但更广泛的系统支持对于保障她们的福祉和未来的机会至关重要。报告方法本研究遵循PRISMA报告指南。患者或公众贡献:一个由年轻痴呆患者、年轻家庭护理人员、临床医生和学者组成的定制研究咨询小组指导了这项综述。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
A Systematic Review of the Needs of Children and Young People of a Parent Diagnosed With Young-Onset-Dementia: Informing a Nursing Intervention.
AIM The aim of this study was to understand the needs of children and young people of a parent with young-onset dementia, to inform the development of a nursing model. BACKGROUND Children and young people of a parent diagnosed with young onset dementia have a range of needs that are subject to change and aligned to their stage of development and growth. DESIGN Systematic review. DATA SOURCES Searches were conducted in PsycInfo (1806-Jan 2025), Medline (1996-Jan 2025) and CINAHL (1961-Jan 2025); search terms were developed in consultation with an academic librarian. REVIEW METHODS The Preferred Reporting Items for Systematic reviews and Meta-Analyses was used to assess the trustworthiness and applicability of the findings and the Mixed Methods Assessment Tool to assess quality. The review protocol was registered on PROSPERO (CRD42024534104). Needs identified from the literature were matched with the activities and interventions of a specialist nursing model. RESULTS Searches yielded 223 records of which 17 met the inclusion/exclusion criteria, the majority of which used qualitative methods (N = 16). A thematic synthesis approach was used to analyse data to reveal four emergent themes: (1) finding a way, (2) social connection and peer support, (3) preserving childhood and adolescence and (4) practical support, including the needs relating to education. Identified needs: knowledge and information, emotional support, consistency in education and development, maintaining social connections, physical and psychological well-being, and grief and loss were mapped against a specialist nurse role. CONCLUSION Children and young people with a parent diagnosed with young-onset dementia face unique challenges compared to older carers. Despite growing awareness of their needs, this population is often overlooked in national dementia strategies. Developing a specialist nurse role is a positive step, but broader systemic support is essential to safeguard their well-being and future opportunities. REPORTING METHOD This study adheres to the PRISMA reporting guidelines. PATIENT OR PUBLIC CONTRIBUTION A bespoke Research Advisory Group, consisting of people with young onset dementia, young family carers, clinicians and academics, guided the review.
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来源期刊
CiteScore
6.40
自引率
7.90%
发文量
369
审稿时长
3 months
期刊介绍: The Journal of Advanced Nursing (JAN) contributes to the advancement of evidence-based nursing, midwifery and healthcare by disseminating high quality research and scholarship of contemporary relevance and with potential to advance knowledge for practice, education, management or policy. All JAN papers are required to have a sound scientific, evidential, theoretical or philosophical base and to be critical, questioning and scholarly in approach. As an international journal, JAN promotes diversity of research and scholarship in terms of culture, paradigm and healthcare context. For JAN’s worldwide readership, authors are expected to make clear the wider international relevance of their work and to demonstrate sensitivity to cultural considerations and differences.
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