误解、认知偏差和错失的机会：来自 CF 患者、照顾者和 CF 团队成员的关于坚持障碍的观点。
Misunderstandings, misperceptions, and missed opportunities: Perspectives on adherence barriers from people with CF, caregivers, and CF team members.
机构信息
The Johns Hopkins University School of Medicine, Department of Medicine, Baltimore, MD, USA.
The Johns Hopkins University School of Medicine, Department of Medicine, Baltimore, MD, USA.
出版信息
Patient Educ Couns. 2020 Aug;103(8):1587-1594. doi: 10.1016/j.pec.2020.02.025. Epub 2020 Feb 19.
OBJECTIVE
To identify differences in perspectives of people with cystic fibrosis (PwCF) and caregivers versus healthcare providers on adherence barriers. Mismatched perspectives may lead to miscommunication and missed opportunities to reduce barriers and improve CF outcomes.
METHODS
PwCF, caregivers, and CF providers completed audio-taped, semi-structured interviews about adherence barriers. Interviews were transcribed and coded for themes. Themes were reviewed to identify when PwCF-caregiver perspectives differed from providers'.
RESULTS
Participants included 14 adolescents with CF (mean age = 15.89 years, 64 % female, 71 % Caucasian), 14 adults with CF (mean age = 30.03 years, 64 % female, 57 % Caucasian), 29 caregivers (76 % female; 72 % Caucasian), and 42 providers. Four barriers were identified that could generate miscommunication between PwCF-caregivers and providers: Tired = Fatigued/Sleepy versus Tired = Burnout, Vacation and Travel, Knowledge and Skills About CF Regimen, and Daily Habits or Routines. PwCF and caregivers used similar words as providers, but conceptualized barriers differently. PwCF and caregivers discussed barriers pragmatically, however, providers viewed certain barriers more abstractly or unidimensionally, or did not discuss them.
CONCLUSIONS
PwCF-caregivers and providers may not align in how they discuss barriers, which may contribute to miscommunication about adherence challenges.
PRACTICE IMPLICATIONS
Patient-centered communication strategies may enhance providers' understandings of PwCF-caregiver perspectives on barriers and facilitate adherence interventions.
目的
确定囊性纤维化（CF）患者（PwCF）及其照护者与医疗保健提供者在坚持治疗的障碍方面的观点差异。观点的不匹配可能导致沟通不畅，错失减少障碍和改善 CF 结局的机会。
方法
PwCF、照护者和 CF 提供者完成了关于坚持治疗障碍的录音半结构化访谈。访谈记录进行了转录和编码，以确定主题。审查主题时，确定了 PwCF-照护者的观点与提供者观点不同的地方。
结果
参与者包括 14 名患有 CF 的青少年（平均年龄 15.89 岁，64%为女性，71%为白种人），14 名成年 CF 患者（平均年龄 30.03 岁，64%为女性，57%为白种人），29 名照护者（76%为女性；72%为白种人）和 42 名提供者。确定了四个可能导致 PwCF-照护者和提供者之间沟通不畅的障碍：Tired=Fatigued/Sleepy 与 Tired=Burnout，休假和旅行，CF 治疗方案的知识和技能，以及日常习惯或日常生活。PwCF 和照护者与提供者使用相似的词汇，但对障碍的概念化不同。PwCF 和照护者从实际角度讨论障碍，而提供者则更抽象或单一维度地看待某些障碍，或者不讨论这些障碍。
结论
PwCF-照护者和提供者在讨论障碍的方式上可能不一致，这可能导致在坚持治疗的挑战方面沟通不畅。
实践意义
以患者为中心的沟通策略可以增强提供者对 PwCF-照护者对障碍看法的理解，并促进坚持治疗的干预措施。
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