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1型糖尿病患儿家长日常生活中的转变经历:一种诠释性描述。

Experiences of transitions in daily life for parents of children with type 1 diabetes: An interpretive description.

作者信息

Holmström Rising Malin, Söderberg Siv

机构信息

Department of Health Sciences, Mid Sweden University, Sundsvall, Sweden.

出版信息

Res Nurs Health. 2023 Jun;46(3):313-322. doi: 10.1002/nur.22303. Epub 2023 Feb 23.

Abstract

In this study, we aimed to explore and describe the experiences of parents whose children have been diagnosed with type 1 diabetes (T1D) and the transitions of daily life. T1D is a long-term illness, and parents of children with T1D often become informal caregivers and face many challenges in their daily lives. A qualitative study design, in line with interpretive description, was used, and a sample of 10 parents of children with T1D participated in individual interviews. The COnsolidated criteria for REporting Qualitative Research (COREQ) checklist was used. The interviews were analyzed using interpretive descriptions. The analysis resulted in one main theme: "The realization of having taken 'daily life' for granted and having to accept a new reality," with six themes showing different transitions in the parents' daily lives, including transitions in daily life patterns, parenthood, in relationships with family and friends, relationships with school personnel, relationships with healthcare personnel, and in knowledge and learning about the illness. Parents experienced multifaceted changes that affected their lives, as shown by the six identified transitions. Being the parent of a child with T1D implies a new reality with complex, irreversible life changes that may be unknown and unspoken to healthcare professionals and society. Healthcare systems, school personnel, and society at large need to improve their knowledge regarding parents' situations to better support them in embracing a new reality for themselves and their children long after the onset of T1D.

摘要

在本研究中,我们旨在探索和描述其子女被诊断为1型糖尿病(T1D)的家长的经历以及日常生活的转变。T1D是一种长期疾病,患有T1D的儿童的家长常常成为非正式护理人员,并且在日常生活中面临诸多挑战。我们采用了符合诠释性描述的定性研究设计,10位患有T1D的儿童的家长参与了个人访谈。使用了定性研究报告的统一标准(COREQ)清单。访谈采用诠释性描述进行分析。分析得出一个主要主题:“意识到曾将‘日常生活’视为理所当然,而现在不得不接受新现实”,有六个主题展现了家长日常生活中的不同转变,包括日常生活模式的转变、为人父母角色的转变、与家人和朋友关系的转变、与学校工作人员关系的转变、与医护人员关系的转变以及对该疾病知识和了解方面的转变。如所确定的六个转变所示,家长经历了影响其生活的多方面变化。作为患有T1D的儿童的家长意味着一种新现实,伴随着复杂、不可逆转的生活变化,而这些变化对于医护人员和社会来说可能是未知且未被提及的。医疗系统、学校工作人员以及整个社会需要增进对家长状况的了解,以便在T1D发病很久之后,能更好地支持他们为自己和孩子接受新现实。

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