Experiences of families of people living with frontotemporal dementia: a qualitative systematic review
Experiences of families of people living with frontotemporal dementia: a qualitative systematic review
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额颞叶痴呆患者家庭的经历：定性系统评价
DOI：
10.1111/psyg.12837
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发表时间：
2022
期刊：
影响因子：
2
通讯作者：
Tanimukai Satoshi
中科院分区：
文献类型：
--
作者：
Shiba Tamami;Yamakawa Miyae;Endo Yoshimi;Konno Rie;Tanimukai Satoshi
额颞叶痴呆（FTD）的特征是额叶和/或颞叶萎缩。FTD患者从一开始就表现出语言和情绪障碍，沟通问题通常会影响FTD患者及其家人，甚至在诊断之前。FTD的这些独特特征尚未得到很好的理解，并为FTD患者及其家庭带来了重大问题。这篇综述探讨了FTD患者家庭的经历。根据系统性综述和Meta-分析指南的首选报告项目选择和筛选研究。我们检索了四个书目数据库中截至2021年2月的文章，以确定有关家庭经历的定性数据。定性研究的关键评估技能计划清单用于评估所有纳入的研究。在235篇识别的文章中，我们在定性综合中纳入了6项研究。进行了Meta人种学分析，以解释FTD患者的家庭经历。这些新出现的概念被综合成五个主题：我所爱的人出了问题;没有人完全理解;照顾患有FTD的亲人的潜在痛苦;由于特定的FTD症状而增加的负担;被迫适应与患有FTD的亲人一起生活的新的和独特的方式。该综述强调了家庭的困惑和痛苦（始于疾病的早期阶段，有时在诊断之前）以及与FTD患者沟通的困难。这些研究结果对今后的做法有影响，因为它们表明，在疾病进展早期而不是在疾病进展后提供适当的支持对家庭生活有积极影响。
Frontotemporal dementia (FTD) is characterised by atrophy of the frontal and/or temporal lobes. People with FTD show language and emotional disturbances from onset, and communication problems usually affect people with FTD and their families even before diagnosis. These unique characteristics of FTD are not well understood and create substantial problems for people living with FTD and their families. This review explores the experiences of families of people living with FTD. Studies were selected and screened according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. We searched four bibliographic databases for articles up to February 2021 to identify qualitative data on the experiences of families. The Critical Appraisal Skills Programme checklist for qualitative studies was used to assess all included studies. Of 235 identified articles, we included six studies in the qualitative synthesis. Meta‐ethnography was conducted to interpret families' experiences of people living with FTD. The emergent concepts were synthesised into five themes: Something is wrong with my loved one; No one fully understands; Existential pain of caring for a loved one with FTD; Increased burden owing to specific FTD symptoms; and Forced to adapt to new and unique ways of living with a loved one with FTD. This review highlighted families' confusion and suffering (which began in the early stages of the disease, and sometimes before diagnosis) and the difficulty of communicating with people with FTD. These findings have implications for future practice, as they demonstrate the positive effect on family life of appropriate support that is provided early, rather than after the disease has progressed.
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影响因子：
3.7
作者：
Page MJ;McKenzie JE;Bossuyt PM;Boutron I;Hoffmann TC;Mulrow CD;Shamseer L;Tetzlaff JM;Akl EA;Brennan SE;Chou R;Glanville J;Grimshaw JM;Hróbjartsson A;Lalu MM;Li T;Loder EW;Mayo-Wilson E;McDonald S;McGuinness LA;Stewart LA;Thomas J;Tricco AC;Welch VA;Whiting P;Moher D
通讯作者：
Moher D
罕见的痴呆症和护理人员的观点
影响因子：
7
作者：
D. Logiudice;A. Hassett
通讯作者：
A. Hassett
当痴呆症在家中时：年轻护理人员的需求评估调查
DOI：
--
发表时间：
2013
期刊：
Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques
影响因子：
--
作者：
Katherine Nichols;David J Fam;Cheryl Cook;Michelle J. Pearce;Gail E. Elliot;Sylvia Baago;K. Rockwood;T. Chow
通讯作者：
T. Chow
影响因子：
3.2
作者：
Oyebode, Jan R.;Bradley, Paul;Allen, Joanne L.
通讯作者：
Allen, Joanne L.
元民族志 25 年来：综合大量定性研究的挑战和见解
影响因子：
4
作者：
F. Toye;K. Seers;N. Allcock;M. Briggs;E. Carr;K. Barker
通讯作者：
K. Barker