探索患有囊性纤维化症的父母的生活经验:一种定性研究
Anne Jacob1, Dominique Hubert2, Cléa Brain1
1Université Paris Cité, France.
Journal of health psychology
|January 7, 2025
概括
由于预期寿命的增加,患有囊性纤维化 (CF) 的人越来越多地追求成为父母. 这项研究探讨了患有CF的父母的快乐和挑战,强调了家庭的调整和孩子的观点.
科学领域:
- 医学社会学 医学社会学
- 生殖健康 生殖健康
- 儿科健康 儿科健康
背景情况:
- 囊性纤维化 (CF) 患者的预期寿命增加导致更多的追求成为父母.
- 成为父母为那些患有CF的人提供了独特的体验.
研究的目的:
- 探索患有囊性纤维化症的父母的生活经历.
- 确定CF的育儿所面临的挑战和积极方面.
主要方法:
- 这项研究涉及18名患有CF的法国父母,包括母亲和肺移植患者.
- 对采访成绩单进行了主题分析,以确定关键主题.
主要成果:
- 七个主题出现了:父母的旅程,父母的经验,日常生活,行政/财务方面,CF与儿童生活的互动,配偶和孩子.
- 参与者在受孕时面临困难,在肺移植等敏感时期进行导航,并管理儿童对CF的理解和担忧.
结论:
- 对于患有CF的个体来说,成为父母需要做出重大后勤和情感调整.
- 家庭发展了应对机制,平衡正常生活与对父母健康的担忧.
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