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了解父母的历程:探索新诊断为1型糖尿病儿童住院期间的经历、需求和看法。

Understanding the parental journey: Exploring experiences, needs, and perceptions during hospitalization for children newly diagnosed with type 1 diabetes.

作者信息

Jespersen Louise Norman, Mikkelsen Kristine Zoega, Frederiksen Signe Emilie, Johannesen Jesper, Grabowski Dan

机构信息

Department of Prevention, Health Promotion & Community Care, Copenhagen University Hospital - Steno Diabetes Center Copenhagen, Herlev, Denmark.

Department of Prevention, Health Promotion & Community Care, Copenhagen University Hospital - Steno Diabetes Center Copenhagen, Herlev, Denmark.

出版信息

Patient Educ Couns. 2025 Mar;132:108579. doi: 10.1016/j.pec.2024.108579. Epub 2024 Dec 2.

Abstract

OBJECTIVE

The onset of childhood diabetes necessitates that the child and family quickly must learn numerous self-management tasks. Diabetes education is key to successful self-management, and established diabetes-related habits are known to be difficult to change. Hence, the initial hospital-based diabetes education and support is a distinct opportunity to optimize habits and disease management. The aim of this study is to investigate parents' experiences with the education and support provided at the hospital when a child has been newly diagnosed with type 1 diabetes.

METHODS

Twenty semi-structured interviews were conducted with parents of children (0-18 years) newly diagnosed with type 1 diabetes. Inductive thematic analysis was used for data analysis.

RESULTS

Four overarching themes, each with its own implications were identified: 1) From a feeling of uncertainty toward a sense of perceived security 2) Certainty induces calmness 3) A balanced approach to diabetes 4) Trying to learn all about diabetes in just one week. The four themes stress the families' need of immediate reassurance from the health professionals.

CONCLUSIONS AND PRACTICAL IMPLICATIONS

The study sheds light on families' challenges during initial hospital-based diabetes education, offering insights for healthcare professionals to tailor support strategies and improve diabetes management.

摘要

目的

儿童糖尿病的发病使患儿及其家庭必须迅速学会众多自我管理任务。糖尿病教育是成功进行自我管理的关键,而且已知既定的糖尿病相关习惯很难改变。因此,最初在医院开展的糖尿病教育与支持是优化习惯和疾病管理的绝佳契机。本研究的目的是调查儿童新诊断为1型糖尿病时,家长对医院提供的教育与支持的体验。

方法

对新诊断为1型糖尿病儿童(0至18岁)的家长进行了20次半结构式访谈。采用归纳主题分析法进行数据分析。

结果

确定了四个总体主题,每个主题都有其自身的影响:1)从不确定感转变为安全感 2)确定感带来平静 3)应对糖尿病的平衡方法 4)试图在短短一周内了解有关糖尿病的所有知识。这四个主题强调了家庭需要健康专业人员立即给予安心。

结论与实际意义

该研究揭示了家庭在最初基于医院的糖尿病教育期间所面临的挑战,为医疗保健专业人员调整支持策略和改善糖尿病管理提供了见解。

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