Bregnballe Vibeke, Schiøtz Peter Oluf, Lomborg Kirsten
Department of Pediatrics, Aarhus University Hospital, Aarhus University, Aarhus, Denmark.
Patient Prefer Adherence. 2011;5:563-70. doi: 10.2147/PPA.S25870. Epub 2011 Nov 7.
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.
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.
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.
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.
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.
患有囊性纤维化（CF）的青少年在青春期可能会出现一些问题，例如依从性差。这些问题可能归因于青少年对成年生活准备不足。关于养育患有CF的青少年的不同方式以及不同养育方式对青少年治疗依从性的影响的研究仍然有限。
本研究的目的是确定患有CF的青少年和青年希望得到的父母支持类型，并找出有助于他们为成年生活做好准备的支持类型。
16名年龄在14 - 25岁之间的丹麦CF青少年参与了该研究。进行了两次焦点小组访谈，一次针对14 - 18岁的青少年，一次针对19 - 25岁的青少年。还对三名受试者进行了个人访谈。采用解释性描述策略对访谈数据进行了二次分析。
青少年和青年希望他们的父母了解青少年的经历。他们希望父母学习一种教育性的养育方式，学会信任他们，并学会逐步移交对其医疗治疗的责任。此外，青少年指出与其他父母见面可能对自己的父母有益。
本研究结果表明，患有CF的青少年和青年希望他们的父母接受关于如何照顾患有CF的青少年的教育，从而使他们为成年生活做好充分准备。
