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本文引用的文献

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Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers.数字阿尔茨海默病中心评估:测试面向痴呆症患者及其护理人员的在线门户的可用性和实用性。
JMIR Res Protoc. 2016 Jul 21;5(3):e144. doi: 10.2196/resprot.5040.
2
A systematic review of the effect of telephone, internet or combined support for carers of people living with Alzheimer's, vascular or mixed dementia in the community.一项关于电话、互联网或综合支持对社区中阿尔茨海默病、血管性痴呆或混合性痴呆患者照料者影响的系统评价。
Arch Gerontol Geriatr. 2016 Sep-Oct;66:218-36. doi: 10.1016/j.archger.2016.06.013. Epub 2016 Jun 23.
3
Exploring the views of GPs, people with dementia and their carers on assistive technology: a qualitative study.探索全科医生、痴呆症患者及其护理人员对辅助技术的看法:一项定性研究。
BMJ Open. 2016 May 13;6(5):e011132. doi: 10.1136/bmjopen-2016-011132.
4
Timely Diagnosis for Alzheimer's Disease: A Literature Review on Benefits and Challenges.阿尔茨海默病的及时诊断:关于益处与挑战的文献综述
J Alzheimers Dis. 2016;49(3):617-31. doi: 10.3233/JAD-150692.
5
The assessment of dementia in primary care.基层医疗中痴呆症的评估
J Psychiatr Ment Health Nurs. 2015 Nov;22(9):731-7. doi: 10.1111/jpm.12250.
6
Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach.支持和维持痴呆症患者居家护理有效方法的证据:一项采用系统方法的文献综述
BMC Geriatr. 2015 May 13;15:59. doi: 10.1186/s12877-015-0053-9.
7
START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants' views about the intervention.START(亲属应对策略):针对成年痴呆症患者家庭照料者的应对策略:对参与者关于该干预措施看法的定性研究
BMJ Open. 2014 Jun 4;4(6):e005273. doi: 10.1136/bmjopen-2014-005273.
8
The use of global positional satellite location in dementia: a feasibility study for a randomised controlled trial.全球定位卫星定位技术在痴呆症中的应用:一项随机对照试验的可行性研究。
BMC Psychiatry. 2014 May 30;14:160. doi: 10.1186/1471-244X-14-160.
9
A randomized controlled pilot study to evaluate a technology platform for the assisted living of people with dementia and their carers.一项随机对照试验性研究,旨在评估一个用于痴呆症患者及其照料者辅助生活的技术平台。
J Alzheimers Dis. 2014;41(2):515-23. doi: 10.3233/JAD-132156.
10
Dementia diagnosis and post-diagnostic support in Scottish rural communities: experiences of people with dementia and their families.苏格兰农村社区的痴呆症诊断及诊断后支持:痴呆症患者及其家人的经历
Dementia (London). 2014 Mar 1;13(2):233-47. doi: 10.1177/1471301212460608. Epub 2012 Nov 5.

数字支持平台:一项定性研究,调查为痴呆症患者家庭提供的基于互联网的诊断后支持平台的可行性。

Digital Support Platform: a qualitative research study investigating the feasibility of an internet-based, postdiagnostic support platform for families living with dementia.

作者信息

Killin Lewis O J, Russ Tom C, Surdhar Sushee Kaur, Yoon Youngseo, McKinstry Brian, Gibson Grant, MacIntyre Donald J

机构信息

Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.

NHS Lothian, Edinburgh, UK.

出版信息

BMJ Open. 2018 Apr 12;8(4):e020281. doi: 10.1136/bmjopen-2017-020281.

DOI:10.1136/bmjopen-2017-020281
PMID:29654028
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5898353/
Abstract

OBJECTIVES

To establish the feasibility of the Digital Support Platform (DSP), an internet-based, postdiagnostic tool designed for families living with a diagnosis of dementia.

DESIGN

Qualitative methods using normalisation process theory as an analysis framework for semistructured interview transcriptions.

SETTING

A community care setting in the South-East Scotland.

PARTICIPANTS

We interviewed 10 dyads of people with Alzheimer's, vascular or mixed dementia (PWD), and their family carers, who had been given and had used the DSP for at least 2 months.

RESULTS

Our analysis revealed that the DSP was predominantly understood and used by the carers rather than PWD, and was used alongside tools and methods they already used to care for their relative. The DSP was interpreted as a tool that may be of benefit to those experiencing later stages of dementia or with physical care needs. Carers stated that the DSP may be of benefit in the future, reflecting a disinclination to prepare for or anticipate for future needs, rather than focus on those needs present at the time of distribution. PWD spoke positively about an interest in learning to use technology more effectively and enjoyed having their own tablet devices.

CONCLUSIONS

The DSP was not wholly appropriate for families living with dementia in its early stages. The views of carers confirmed that postdiagnostic support was valued, but emphasised the importance of tailoring this support to the exact needs and current arrangements of families. There may be a benefit to introducing, encouraging, providing and teaching internet-enabled technology to those PWD who do not currently have access. Training should be provided when introducing new technology to PWD.

摘要

目的

评估数字支持平台(DSP)的可行性,这是一款基于互联网的诊断后工具,专为患有痴呆症的家庭设计。

设计

采用定性方法,以规范化过程理论作为半结构化访谈转录的分析框架。

背景

苏格兰东南部的一个社区护理机构。

参与者

我们采访了10对患有阿尔茨海默病、血管性痴呆或混合性痴呆的患者(PWD)及其家庭护理人员,他们已获得并使用DSP至少2个月。

结果

我们的分析表明,主要是护理人员而非PWD理解并使用了DSP,并且它是与他们已经用于照顾亲属的工具和方法一起使用的。DSP被理解为一种可能对处于痴呆症后期或有身体护理需求的人有益的工具。护理人员表示,DSP未来可能会有帮助,这反映出他们不愿意为未来的需求做准备或预测,而不是关注分发时存在的需求。PWD积极谈论了他们对更有效地学习使用技术的兴趣,并喜欢拥有自己的平板电脑设备。

结论

DSP并不完全适用于处于早期阶段的痴呆症患者家庭。护理人员的观点证实了诊断后支持的价值,但强调了根据家庭的确切需求和当前安排量身定制这种支持的重要性。向目前无法使用互联网技术的PWD引入、鼓励、提供和教授此类技术可能会有好处。在向PWD引入新技术时应提供培训。