Jonsson Marina, Schuster Marja, Protudjer Jennifer L P, Bergström Anna, Egmar Ann-Charlotte, Kull Inger
Centre of Occupational and Environmental Medicine, Stockholm County Council, Sweden; Institute of Environmental Medicine, Karolinska Institutet, Sweden.
The Swedish Red Cross University College, Department of Technology and Welfare, Sweden.
J Pediatr Nurs. 2017 Jul-Aug;35:23-29. doi: 10.1016/j.pedn.2017.02.005. Epub 2017 Mar 7.
There is limited knowledge about how adolescents with asthma view their disease in daily life and how these views impact on management. The aim of this study was to describe experiences of daily life, with particular focus on thoughts, feelings and management of adolescents with asthma.
In this qualitative study, data were obtained from 10 interviews with adolescents (aged 16-18 years) with asthma recruited from the Swedish population-based prospective birth cohort, BAMSE. Data were analysed through Systematic Text Condensation.
Experiences of daily life among adolescents with asthma were defined in four categories: Insight and understanding; Asthma not the focus of daily life; Being acknowledged and, Being affected by asthma symptoms. The adolescents had developed an insight into and understanding of their disease, but did not want asthma to be the focus of their daily lives. The adolescents wanted their asthma to be acknowledged, but not to the point that they were defined by their asthma. They reported having many asthma symptoms, especially during physical activity, but also described a desire to feel healthy, "normal" and like their peers.
Having asthma in adolescence involves several struggles with ambivalence between adapting socially, feeling healthy and managing one's asthma.
The provision of person-centred care may be one way to handle the ambivalence among adolescents with asthma and thereby help them to manage their asthma.
关于哮喘青少年如何看待其疾病在日常生活中的情况以及这些看法如何影响疾病管理,我们所知有限。本研究的目的是描述哮喘青少年的日常生活经历,尤其关注他们的想法、感受和疾病管理情况。
在这项定性研究中,数据来自对10名哮喘青少年(年龄在16 - 18岁)的访谈,这些青少年从瑞典基于人群的前瞻性出生队列BAMSE中招募。数据通过系统文本浓缩法进行分析。
哮喘青少年的日常生活经历分为四类:洞察与理解;哮喘并非日常生活的焦点;被认可;受哮喘症状影响。青少年对自己的疾病有了一定的洞察和理解,但不希望哮喘成为他们日常生活的焦点。青少年希望自己的哮喘得到认可,但又不想因哮喘而被定义。他们报告有许多哮喘症状,尤其是在体育活动期间,但也表达了想要感觉健康、“正常”并像同龄人一样的愿望。
青少年患哮喘涉及在社交适应、感觉健康和管理哮喘之间的多重矛盾挣扎。
提供以患者为中心的护理可能是处理哮喘青少年矛盾心理的一种方式,从而帮助他们管理哮喘。