Oslo University Hospital, Norway.
J Intellect Disabil. 2022 Sep;26(3):704-717. doi: 10.1177/17446295211002348. Epub 2021 May 17.
The aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies.
We followed the scoping review framework outlined by Arksey and O'Malley and the preferred reporting items outlined by PRISMA.
Among the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies. Categories of information needs: (1) Medical information; (2) Information on how to cope with emotional distress; (3) Experiential information from peers; and (4) Interdisciplinary information exchange. The need for disorder-specific information seemed particularly important for caregivers of persons with rare epilepsies.
There is a need for further studies, particularly on formal caregivers' information needs.
本综述的目的是：(1) 了解照顾者报告的信息需求概况；(2) 调查是否存在针对罕见癫痫患者照顾者的独特信息需求。
我们遵循 Arksey 和 O'Malley 概述的范围综述框架以及 PRISMA 概述的首选报告项目。
在符合纳入标准的 17 篇文章中，有 5 篇文章纳入了罕见癫痫患者的照顾者。信息需求类别：(1) 医疗信息；(2) 应对情绪困扰的信息；(3) 来自同行的经验信息；(4) 跨学科信息交流。对于罕见癫痫患者的照顾者来说，特定于疾病的信息需求似乎尤为重要。
需要进一步研究，特别是针对正式照顾者的信息需求。
