Castensøe-Seidenfaden Pernille, Teilmann Grete, Kensing Finn, Hommel Eva, Olsen Birthe Susanne, Husted Gitte Reventlov
Pediatric and Adolescent Department, Nordsjaellands Hospital, Hillerød, Denmark.
Department of Computer Science, University of Copenhagen, Copenhagen, Denmark.
J Clin Nurs. 2017 Oct;26(19-20):3018-3030. doi: 10.1111/jocn.13649. Epub 2017 Feb 8.
To explore and describe the experiences of adolescents and their parents living with type 1 diabetes, to identify their needs for support to improve adolescents' self-management skills in the transition from child- to adulthood.
Adolescents with type 1 diabetes often experience deteriorating glycaemic control and distress. Parents are important in adolescents' ability to self-manage type 1 diabetes, but they report anxiety and frustrations. A better understanding of the challenges adolescents and parents face, in relation to the daily self-management of type 1 diabetes, is important to improve clinical practice.
A qualitative explorative study using visual storytelling as part of individual interviews.
A purposive sample of nine adolescents and their parents (seven mothers, six fathers) took photographs illustrating their experiences living with type 1 diabetes. Subsequently, participants were interviewed individually guided by participants' photographs and a semistructured interview guide. Interviews were analysed using thematic analysis.
Four major themes were consistent across adolescents and their parents: (1) striving for safety, (2) striving for normality, (3) striving for independence and (4) worrying about future. Although adolescents and parents had same concerns and challenges living with type 1 diabetes, they were experienced differently. Their thoughts and feelings mostly remained isolated and their concerns and challenges unsolved.
The concerns and challenges adolescents and their parents face in the transition from child- to adulthood are still present despite new treatment modalities. Parents are fundamental in supporting the adolescents' self-management-work; however, the parties have unspoken concerns and challenges.
Healthcare providers should address the parties' challenges and concerns living with type 1 diabetes to diminish worries about future including fear of hypoglycaemia, the burden of type 1 diabetes and the feeling of being incompetent in diabetes self-management. It is important to focus on supporting both adolescents and their parents, and to provide a shared platform for communication.
探讨并描述青少年及其父母患1型糖尿病的经历，确定他们在青少年从儿童期向成年期过渡阶段提高自我管理技能所需的支持。
患有1型糖尿病的青少年经常血糖控制恶化且感到痛苦。父母对于青少年自我管理1型糖尿病的能力很重要，但他们表示焦虑和沮丧。更好地了解青少年及其父母在1型糖尿病日常自我管理方面面临的挑战，对于改善临床实践很重要。
一项定性探索性研究，将视觉叙事作为个人访谈的一部分。
从九名青少年及其父母（七位母亲，六位父亲）中进行目的抽样，他们拍摄了说明自己患1型糖尿病经历的照片。随后，在参与者照片和半结构化访谈指南的引导下对参与者进行单独访谈。采用主题分析法对访谈进行分析。
青少年及其父母一致存在四个主要主题：（1）追求安全，（2）追求正常，（3）追求独立，（4）担忧未来。尽管青少年及其父母在患1型糖尿病方面有相同的担忧和挑战，但感受却不同。他们的想法和感受大多仍然孤立，担忧和挑战也未得到解决。
尽管有新的治疗方式，但青少年及其父母在从儿童期向成年期过渡中面临的担忧和挑战仍然存在。父母在支持青少年自我管理工作方面至关重要；然而，各方都有未说出口的担忧和挑战。
医疗保健提供者应解决各方在患1型糖尿病方面的挑战和担忧，以减少对未来的担忧，包括对低血糖的恐惧、1型糖尿病的负担以及糖尿病自我管理中无能的感觉。关注支持青少年及其父母并提供一个共享的交流平台很重要。
