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本文引用的文献

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Family Self-Care Pattern in Families with Children with Intellectual Disabilities: A Pilot Study.智障儿童家庭的家庭自我护理模式:一项试点研究。
Healthcare (Basel). 2025 Apr 2;13(7):791. doi: 10.3390/healthcare13070791.
2
Bridging gaps in healthcare: child health services and specialist care collaboration for young children with autism and coexisting conditions.弥合医疗保健差距:儿童健康服务与专科护理协作,为患有自闭症及并存病症的幼儿提供服务
Front Pediatr. 2025 Feb 6;13:1501650. doi: 10.3389/fped.2025.1501650. eCollection 2025.
3
The Attachment Strengths and Needs Interview for parents of children with severe or profound intellectual disabilities: An acceptability and feasibility study.针对重度或极重度智力残疾儿童家长的依恋强度与需求访谈:一项可接受性与可行性研究。
J Intellect Dev Disabil. 2022 Jun;47(2):118-130. doi: 10.3109/13668250.2021.1925528. Epub 2021 Jun 5.
4
Family-centred care interventions for children with chronic conditions: A scoping review.以家庭为中心的照护干预措施在儿童慢性病管理中的应用:系统评价。
Health Expect. 2024 Feb;27(1):e13897. doi: 10.1111/hex.13897.
5
Impact of family-centered care in families with children with intellectual disability: A systematic review.以家庭为中心的护理对智障儿童家庭的影响:一项系统综述。
Heliyon. 2024 Mar 15;10(7):e28241. doi: 10.1016/j.heliyon.2024.e28241. eCollection 2024 Apr 15.
6
Family Self-Care in Chronic Disease Management: An Evolving Care Pattern?慢性病管理中的家庭自我护理:一种不断演变的护理模式?
SAGE Open Nurs. 2024 Feb 4;10:23779608231226069. doi: 10.1177/23779608231226069. eCollection 2024 Jan-Dec.
7
Identifying Research Priorities to Promote the Well-Being of Family Caregivers of Canadians with Intellectual and/or Developmental Disabilities: A Pilot Delphi Study.确定研究重点以促进加拿大智障和/或发育障碍者家庭照顾者的福祉:一项试点德尔菲研究。
Int J Environ Res Public Health. 2023 Nov 16;20(22):7072. doi: 10.3390/ijerph20227072.
8
'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability.“不仅仅是策略本身”:探索照顾者在为智障自闭症人士开发干预措施时获取服务的体验。
Autism. 2024 May;28(5):1231-1244. doi: 10.1177/13623613231196084. Epub 2023 Sep 15.
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Is pre-bereavement collaboration between family caregivers and healthcare professionals associated with post-bereavement emotional well-being? A population-based survey.丧亲前家庭照顾者与医疗保健专业人员之间的合作是否与丧亲后的情绪健康相关?一项基于人群的调查。
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10
Effectiveness of peer support programmes for improving well-being and quality of life in parents/carers of children with disability or chronic illness: A systematic review.同伴支持计划对改善残疾或慢性病患儿父母/照料者的幸福感和生活质量的有效性:一项系统评价。
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智力残疾背景下的家庭自我护理:葡萄牙一项定性研究的见解

Family Self-Care in the Context of Intellectual Disabilities: Insights from a Qualitative Study in Portugal.

作者信息

Mestre Teresa Dionísio, Lopes Manuel José, Costa Ana Pedro, Caldeira Ermelinda Valente

机构信息

Health Department, Polytechnic Institute of Beja, 7800-111 Beja, Portugal.

Comprehensive Health Research Center [CHRC], 7004-516 Évora, Portugal.

出版信息

Healthcare (Basel). 2025 Jul 15;13(14):1705. doi: 10.3390/healthcare13141705.

DOI:10.3390/healthcare13141705
PMID:40724730
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12294613/
Abstract

: Family self-care (FSC) is increasingly recognized as a vital aspect of caregiving in pediatric chronic conditions. However, its development in families of children with intellectual disabilities (IDs) remains underexplored. This study aimed to examine how families construct and sustain FSC, and to identify factors that shape its development across four domains: physical, cognitive, psychosocial, and behavioral. : A qualitative study was conducted using an abductive approach, combining inductive thematic analysis with a deductively applied theoretical framework. Semi-structured interviews were carried out with nine families of children with ID in southern Portugal. The children ranged in age from 4 to 15 years, and the parents were aged between 29 and 53 years. The data was analyzed using Bardin's content analysis, supported by NVivo software, and organized according to the FSC framework. This study followed COREQ guidelines. : The families described a range of self-care strategies, including environmental adaptations, experiential learning, emotional regulation, and long-term planning. These practices were shaped by contextual factors such as access to healthcare, relationships with professionals, emotional support networks, and socioeconomic conditions. Four emergent conclusions illustrate how structural and relational dynamics influence FSC in daily caregiving. : FSC is a dynamic, multidimensional process shaped by lived experience, family interactions, and systemic support. The findings support inclusive, family-centered care models and inform clinical practice, training, and policy in pediatric IDs.

摘要

家庭自我照护(FSC)日益被视为儿科慢性病照护的一个重要方面。然而,智障(ID)儿童家庭中FSC的发展仍未得到充分探索。本研究旨在探讨家庭如何构建和维持FSC,并确定在身体、认知、心理社会和行为这四个领域影响其发展的因素。

采用归纳法进行了一项定性研究,将归纳主题分析与演绎应用理论框架相结合。对葡萄牙南部九个智障儿童家庭进行了半结构式访谈。儿童年龄在4至15岁之间,父母年龄在29至53岁之间。数据采用巴丁内容分析法进行分析,并得到NVivo软件的支持,且根据FSC框架进行整理。本研究遵循COREQ指南。

这些家庭描述了一系列自我照护策略,包括环境适应、体验式学习、情绪调节和长期规划。这些做法受到诸如获得医疗保健、与专业人员的关系、情感支持网络和社会经济状况等背景因素的影响。四个新出现的结论说明了结构和关系动态如何在日常照护中影响FSC。

FSC是一个由生活经历、家庭互动和系统支持塑造的动态、多维度过程。研究结果支持包容性的、以家庭为中心的照护模式,并为儿科ID的临床实践、培训和政策提供参考。