Mestre Teresa Dionísio, Lopes Manuel José, Costa Ana Pedro, Caldeira Ermelinda Valente
Health Department, Polytechnic Institute of Beja, 7800-111 Beja, Portugal.
Comprehensive Health Research Center [CHRC], 7004-516 Évora, Portugal.
Healthcare (Basel). 2025 Jul 15;13(14):1705. doi: 10.3390/healthcare13141705.
: 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.
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。