Objective: 

This study was designed to increase our understanding of parents' experiences managing the needs of their children with cystic fibrosis (CF) and to identify potential gaps in services.

Method: 

We used grounded dimensional analysis of anonymous survey data obtained from a quality improvement initiative conducted by the Cystic Fibrosis Foundation (CFF). The Patient and Family Experience of Care (PFEC) survey was administered continuously at 125 CF care centers throughout the United States in 2017. The subsample of data for this study was completed by 80 parents/caregivers of children with CF (younger than 18 years).

Results: 

Two unifying themes emerged from parents' survey responses: (1) parents' expertise expands continually as they learn and adapt to changes in their children's maturity or health and (2) parental expertise is sometimes visible or invisible to clinicians. Parents' expertise evolved with their children's development. Visible to care teams was at-home care, e.g., respiratory treatments and medications. Less visible were intangible management activities, e.g., social processes, emotions, and concerns that were omnipresent for parents but seldom disclosed to or seen/recognized by clinicians. Themes, such as the quality of encounters with care teams, progressive nature of CF, and hope derived from advances in research, were associated with specific contextual factors.

Conclusion: 

The findings expand our understanding of lived parental experiences of CF across childhood and offer direction for future quality improvement and research. Online parent surveys offer a valuable tool to identify unmet needs across subgroups of families affected by chronic childhood health conditions.

中文翻译：

---

养育患有囊性纤维化的儿童：发展性获得专业知识

客观的： 

本研究旨在加深我们对父母管理囊性纤维化 (CF) 儿童需求的经验的了解，并找出服务中的潜在差距。

方法： 

我们对囊性纤维化基金会 (CFF) 开展的质量改进计划中获得的匿名调查数据进行了扎根维度分析。2017 年，患者和家庭护理体验 (PFEC) 调查在美国 125 个 CF 护理中心连续进行。这项研究的数据子样本由 80 名 CF 儿童（18 岁以下）的家长/护理人员完成。

结果： 

家长的调查答复中出现了两个统一的主题：(1) 家长的专业知识随着他们学习和适应孩子的成熟度或健康状况的变化而不断扩展；(2) 家长的专业知识有时对临床医生可见或不可见。父母的专业知识随着孩子的成长而发展。护理团队可以看到家庭护理，例如呼吸治疗和药物治疗。不太明显的是无形的管理活动，例如，社会过程、情绪和对父母来说无处不在的担忧，但很少向临床医生透露或看到/认识到。诸如与护理团队接触的质量、CF 的进步性质以及研究进展带来的希望等主题与特定的背景因素相关。

结论： 

这些发现扩大了我们对童年时期 CF 父母生活经历的理解，并为未来的质量改进和研究提供了方向。在线家长调查提供了一个宝贵的工具，可以确定受慢性儿童健康问题影响的家庭亚组中未满足的需求。