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1型糖尿病患儿父母创伤后成长体验的现象学研究OA

A phenomenological study on posttraumatic growth experiences of parents of children with type 1 diabetes mellitus

中文摘要英文摘要

目的:深入探讨1型糖尿病患儿父母创伤后成长的真实体验,为制订1型糖尿病患儿父母教育手册等相关临床实践资料提供一定的参考依据.方法:采用目的抽样法,选取2023年5月—11月某三级甲等儿童专科医院内分泌科收治的9例1型糖尿病患儿父母进行深入访谈,将获得的资料用Colaizzi 7步分析法进行分析.结果:提炼出3个主题,主题1为创伤期的负性情绪体验,包括对疾病确诊的恐惧与焦虑、对自己未识别疾病早期症状的懊恼、对疾病变化及未来的担忧、对孩子心理与情感的忧虑、对孩子人际关系的忧虑、对医疗费用的担忧;主题2为创伤后的正性情绪体验,包括对疾病的了解与接纳、对疾病治愈的期盼、对医务人员支持的肯定;主题3为创伤后对疾病管理的需求,包括对疾病管理知识储备的需求、对同伴支持的需求、对社会支持的需求、对疾病随访指导的需求.结论:1型糖尿病患儿父母在应对疾病创伤事件初期会存在负性情绪体验,但通过医疗支持、社会支持等正向引导后会逐步转向创伤后的正性情绪体验,同时对疾病管理的需求会不断增加,医务人员可以结合父母的具体需求通过多元化的方式给予其相关的指导与支持,使其有效应对疾病创伤,并逐步获得创伤后成长,促进患儿疾病家庭管理能力的整体提升.

Objective:To explore the real experiences of post-traumatic growth among parents of children with type 1 diabetes mellitus(T1DM)and provide references for developing clinical practice materials such as parental education manuals.Methods:Using purposeful sampling,in-depth interviews were conducted with 9 parents of T1DM children treated in the endocrinology department of a tertiary grade A children's hospital between May and November 2023.Data were analyzed using Colaizzi's 7-step phenomenological analysis method.Results:Three themes emerged,negative emotional experiences during the traumatic phase,including fear and anxiety about diagnosis,regret over failing to recognize early symptoms,concerns about disease progression and the future,worries about the child's psychological well-being and social relationships,and financial stress related to medical costs.Positive emotional experiences post-trauma,encompassing disease understanding and acceptance,hope for cure,and appreciation for healthcare professionals'support.Post-traumatic needs for disease management,involving demands for disease knowledge,peer support,social support,and follow-up guidance.Conclusions:Parents of T1DM children initially exhibit negative emotional responses when confronting disease-related trauma.With medical and social support,these emotions gradually transition to post-traumatic positive experiences.Concurrently,their needs for disease management knowledge increase continuously.Healthcare providers should offer targeted guidance through diversified approaches to help parents effectively cope with trauma,achieve post-traumatic growth,and enhance family-based disease management capabilities.

杨巾夏;曹素英;王国英;周慧敏;王娅芸;张欢

215025,苏州大学附属儿童医院215025,苏州大学附属儿童医院215025,苏州大学附属儿童医院215025,苏州大学附属儿童医院215025,苏州大学附属儿童医院215025,苏州大学附属儿童医院

1型糖尿病父母创伤后成长体验现象学研究

type 1 diabetes mellitusparentspost-traumatic growthexperiencephenomenological study

《全科护理》 2025 (10)

1789-1793,5

2023年度苏州市科协软科学研究课题,编号:B22.

10.12104/j.issn.1674-4748.2025.10.002

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