Vion Genovese V, Perceval M, Gauchet A, Buscarlet-Jardine L, Pinsault N, Allenet B, Llerena C
Centre de ressource et de compétence de la mucoviscidose, unité transversale en éducation thérapeutique du patient, CHU Grenoble-Alpes, 38043 Grenoble cedex, France.
Muco-CFTR, 69310 Pierre-Bénite, France.
Rev Mal Respir. 2022 Feb;39(2):132-139. doi: 10.1016/j.rmr.2022.01.006. Epub 2022 Feb 11.
In 2018, 55.4% of the 7180 French cystic fibrosis (CF) patients were adults. Our study was aimed at identifying young adult patients' needs and those of their parents when the young adults arrived in an adult CF center.
Semi-structured interviews, conducted between July 2018 and December 2019and involving all the concerned teenagers and their parents, took place at least 6 months after their transfer. The interview guide dwelt on the aspects having had an impact on their experience of the transition. The interviews were recorded, transcribed and analyzed exhaustively. The results were classified by categorizing the contents according to respondent profile.
Thirty-eight young adult patients and 16 parents were interviewed. As regards the young adults, analysis of their needs underlined the importance of their continuing to develop their skills in adaptation, communication and self-care. As regards their parents, they needed support in view of defining their role in their children's new care pathway.
During and also following the transfer, therapeutic education for the parents as well as the young adults requires reinforcement.
2018年，在7180名法国囊性纤维化（CF）患者中，55.4%为成年人。我们的研究旨在确定年轻成年患者及其父母在进入成人CF中心时的需求。
2018年7月至2019年12月期间，对所有相关青少年及其父母进行了半结构式访谈，访谈在他们转诊至少6个月后进行。访谈指南详细阐述了对他们过渡经历有影响的各个方面。访谈进行了录音、转录并进行了详尽分析。结果根据受访者特征对内容进行分类。
对38名年轻成年患者和16名家长进行了访谈。对于年轻成年人，对他们需求的分析强调了他们继续培养适应、沟通和自我护理技能的重要性。对于他们的父母，鉴于要在孩子新的护理途径中确定自己的角色，他们需要支持。
在转诊期间及之后，需要加强对父母和年轻成年人的治疗性教育。
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