哮喘联盟

   摘要
   目的：目前哮喘治疗可能达到的治疗目标是每一个个体尽可能的在无症状和急性发作的情况下生活。病人以及保健专业人员有时在对于实现良好生活质量什么是重要的这一问题上持有不同的观点。本研究旨在描述伴有哮喘的青少年以及哮喘幼儿的父母的生活经历。
   方法：对四个焦点团体进行访谈，两个是与幼儿父母进行的，两个是与青少年进行。数据使用系统文本缩合进行定性分析。
   结果：提出了三个与伴有哮喘参与者生活经历相关的主题：策略，挫折和期望。青少年患者希望能像同龄人一样，并制定了自己的哮喘自我管理策略，其中包括不用经常规律服用药物。父母着重的是不被信任、孤独或焦虑感不能被理解带来的挫折。一个确定的期望是参与者希望遇到有能力并了解哮喘护理的保健专业人员。父母的另一个期望是幼儿园以及小学老师应该有更多的关于怎样照顾哮喘儿童的认知和知识。
   结论：伴有哮喘的生活导致在哮喘自我管理中发展出个体化的策略。此外所有父母和青少年对遇到有能力和相关认知的保健专业人员抱有希望。患者和保健专业人员合作关系的发展将是改善哮喘患者护理的一个有效方法。
 

（林江涛 审校）
J Asthma. 2013 Nov 5. [Epub ahead of print]

 

Experiences of living with asthma - A focus group study with adolescents and
parents of children with asthma.
 

Jonsson M, Egmar AC, Hallner E, Kull I.
 

ABSTRACT
OBJECTIVE: The goal for asthma treatment is that every individual, so far as possible, shall live without symptoms and exacerbations. Patients and health care professionals sometimes have different perceptions of what is important for achieving good quality of life. This work aims to describe the experiences among adolescents as well as those of parents with young children living with asthma.
METHODS: Four focus group interviews were performed, two with parents of young children and two with adolescents. The data were qualitatively analyzed, using Systematic Text Condensation.
RESULT: Three themes relevant to the participants' experiences of living with asthma were presented; strategies, frustrations and expectations. The adolescents wanted to be like their peers and developed their own strategies for self-management of asthma, which included not always taking medication as prescribed. The parents emphasized frustration regarding not being believed, lack of understanding feelings of loneliness, or anxiety. One identified expectation was that the participants wanted to be met with competence and understanding in asthma care from health care professionals. Another expectation expressed among parents was that teachers in nursery and primary schools should have more knowledge and understanding on how to care for children with asthma.
CONCLUSION: Living with asthma leads to developing personal strategies in self-management of asthma. Moreover both parents and adolescents had expectations of being met by competent and understanding health care professionals. Developing a partnership between patients and health care professionals could be a successful way to improve the care of patients with asthma.
 

J Asthma. 2013 Nov 5. [Epub ahead of print]