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Parenting adolescents with cystic fibrosis: the adolescents’ and young adults’ perspectives

机译：为患有囊性纤维化的青少年做父母：青少年和年轻人的观点

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Background: When suffering from cystic fibrosis (CF), a number of problems may arise during adolescence; for example, poor adherence. The problems may be attributed to the adolescent being insufficiently prepared for adult life. Research on different ways of parenting adolescents with CF and the influence of different parenting styles on the adolescents' adherence to treatment is still limited.Aim: The aim of this study was to identify the types of parental support that adolescents and young adults with CF want and find helpful in terms of preparing them for adult life.Methods: Sixteen Danish adolescents with CF, aged 14–25, participated in the study. Two focus group interviews were carried out, one for 14–18-year-olds and one for 19–25-year-olds. Individual interviews were conducted, with three subjects. Using interpretive description strategy, a secondary analysis of the interview data was conducted.Results: The adolescents and young adults wanted their parents educated about the adolescent experience. They wanted their parents to learn a pedagogical parenting style, to learn to trust them, and to learn to gradually transfer responsibility for their medical treatment. Additionally, the adolescents noted that meeting other parents may be beneficial for the parents.Conclusion: The findings of this study suggest that adolescents and young adults with CF want their parents to be educated about how to handle adolescents with CF and thereby sufficiently prepare them for adult life.
机译：背景：患有囊性纤维化（CF）时，青春期可能会出现许多问题。例如，依从性差。这些问题可能是由于青少年没有为成人生活做好充分的准备。关于以CF养育青少年的不同方式以及不同的养育方式对青少年坚持治疗的影响的研究仍然很有限。目的：本研究的目的是确定青少年和CF想要的年轻人的父母支持类型方法：16位年龄在14至25岁之间的CF丹麦青少年参加了这项研究。进行了两次焦点小组访谈，一次访谈针对14-18岁，另一次针对19-25岁。进行了个人访谈，涉及三个主题。使用解释性描述策略，对访谈数据进行了二次分析。结果：青少年和年轻人希望他们的父母对青少年的经历进行教育。他们希望父母学习教学式的父母教养方式，学会信任他们，并逐步转移医疗责任。此外，青少年指出与其他父母会面可能会对父母有益。结论：本研究的结果表明，患有CF的青少年和年轻人希望对父母进行有关如何处理CF的青少年的教育，从而为他们做好充分的准备成人生活。

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