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探索中国家庭照顾者在支持患有痴呆症的亲人过渡到养老院时的社会和文化方面的体验:一项定性研究方案。

Exploring the social and cultural aspects of Chinese family caregivers' experience as they support loved ones with dementia transitioning into nursing homes: a qualitative study protocol.

机构信息

Department of Population and Quantitative Health Sciences, University of Massachusetts Chan Medical School, Worcester, Massachusetts, USA

Department of Population and Quantitative Health Sciences, University of Massachusetts Chan Medical School, Worcester, Massachusetts, USA.

出版信息

BMJ Open. 2024 Aug 12;14(8):e085731. doi: 10.1136/bmjopen-2024-085731.


DOI:10.1136/bmjopen-2024-085731
PMID:39134432
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11331904/
Abstract

INTRODUCTION: Asian American caregivers supporting loved ones with dementia experience greater burden and more stress than other racial/ethnic groups, warranting the need for more culturally and linguistically appropriate formal support, such as in nursing homes. Transitioning loved ones into nursing homes with dementia care units is a complex process that can be impacted by a multitude of factors. Employing several established frameworks, including the socioecological model, this qualitative study will focus on the largest Asian American subgroup (people of Chinese descent) and explore the experience of family caregivers as they support the transition of their loved ones with dementia into nursing homes in the USA. Our focus will be on the nuanced influences of the Chinese language and culture and COVID-19-related social isolation and racial discrimination. METHODS AND ANALYSIS: Recruitment will take place starting in January 2024. Current or former Chinese caregivers for Chinese loved ones with dementia, able to communicate in Mandarin Chinese or English, and currently residing in the USA will be eligible. Key informants with intimate understanding and experience with this population will also be included. Data will be collected through 2024 using semistructured, in-depth interviews with each participant. Depending on participants' preferences, interviews will be conducted in either Mandarin Chinese or English and either in person, via Zoom or by phone. Interviews will be transcribed verbatim. Iterative thematic analysis will be employed. A coding structure will be developed based on interview questions and themes and patterns that are revealed through data immersion. Transcripts, prepared in their original language, will be dual-coded by bilingual researchers using NVivo 14. Consensus summaries of themes will be prepared. Relevant direct quotes for each thematic area will be identified (those in Chinese will be translated into English) and cited in reports and manuscripts. ETHICS AND DISSEMINATION: The study is approved by the UMass Chan Medical School Institutional Review Board (ID: STUDY00001376). Findings will be published in peer-review journals following the consolidated criteria for reporting qualitative research.

摘要

简介:与其他种族/族裔群体相比,照顾患有痴呆症的亚裔美国护理人员承受着更大的负担和更多的压力,这需要提供更多文化和语言上合适的正式支持,例如在养老院。将患有痴呆症的亲人转移到有痴呆症护理单元的养老院是一个复杂的过程,可能会受到多种因素的影响。本研究将运用包括社会生态学模式在内的几个既定框架,重点关注最大的亚裔美国人亚群(华裔),并探讨家庭护理人员在支持患有痴呆症的亲人过渡到美国养老院时的体验。我们的重点将放在中文语言和文化以及与 COVID-19 相关的社会隔离和种族歧视的细微影响上。

方法与分析:招募工作将于 2024 年 1 月开始。目前或曾经照顾过患有痴呆症的中国亲人、能够用普通话或英语交流且目前居住在美国的中国护理人员将有资格参加。具有深入了解和经验的主要知情人也将包括在内。2024 年之前,将通过对每位参与者的半结构式深入访谈收集数据。根据参与者的偏好,访谈可以用普通话或英语进行,既可以亲自进行,也可以通过 Zoom 或电话进行。访谈将逐字逐句地转录。将采用迭代主题分析。根据访谈问题和主题以及通过数据沉浸揭示的模式,制定编码结构。以原始语言准备的文字记录将由双语研究人员使用 NVivo 14 进行双编码。将准备主题的共识摘要。将为每个主题领域确定相关的直接引语(中文引语将翻译成英文)并在报告和手稿中引用。

伦理与传播:该研究已获得马萨诸塞州大学医学院机构审查委员会的批准(ID:STUDY00001376)。研究结果将在同行评议期刊上发表,遵循定性研究的综合报告标准。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c2b3/11331904/0441bf1701c5/bmjopen-14-8-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c2b3/11331904/0441bf1701c5/bmjopen-14-8-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c2b3/11331904/0441bf1701c5/bmjopen-14-8-g001.jpg

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[1]
Exploring the social and cultural aspects of Chinese family caregivers' experience as they support loved ones with dementia transitioning into nursing homes: a qualitative study protocol.

BMJ Open. 2024-8-12

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[6]
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[7]
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[8]
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[9]
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[10]
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本文引用的文献

[1]
Mindfulness-Based App to Reduce Stress in Caregivers of Persons With Alzheimer Disease and Related Dementias: Protocol for a Single-Blind Feasibility Proof-of-Concept Randomized Controlled Trial.

JMIR Res Protoc. 2023-10-13

[2]
'Imposter participants' in online qualitative research, a new and increasing threat to data integrity?

Health Expect. 2023-6

[3]
Social isolation and 9-year dementia risk in community-dwelling Medicare beneficiaries in the United States.

J Am Geriatr Soc. 2023-3

[4]
Anti-Asian Racism and COVID-19: How It Started, How It Is Going, and What We Can Do.

Epidemiology. 2022-5-1

[5]
COVID-19, loneliness, social isolation and risk of dementia in older people: a systematic review and meta-analysis of the relevant literature.

Int J Psychiatry Clin Pract. 2022-6

[6]
COVID-19 Era Social Isolation among Older Adults.

Geriatrics (Basel). 2021-5-18

[7]
Alzheimer's Disease and its Related Dementias among Asian Americans, Native Hawaiians, and Pacific Islanders: A Scoping Review.

J Alzheimers Dis. 2020

[8]
The REDCap consortium: Building an international community of software platform partners.

J Biomed Inform. 2019-5-9

[9]
The influence of language and culture on cognitive assessment tools in the diagnosis of early cognitive impairment and dementia.

Expert Rev Neurother. 2018-11

[10]
Racial and ethnic estimates of Alzheimer's disease and related dementias in the United States (2015-2060) in adults aged ≥65 years.

Alzheimers Dement. 2018-9-19

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