Objective

Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD).

Methods

Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used.

Results

Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance immediate caregiving activities with future health outcomes; and integrating primary care, specialty, and community supports.

Conclusions

Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

中文翻译：

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确定 NICU 出院后支气管肺发育不良婴儿护理的障碍和促进因素：家长和临床利益相关者的前瞻性研究

客观的

了解支气管肺发育不良 (BPD) 婴儿后续护理的障碍和促进因素。

方法

对照顾 BPD 婴儿的父母和临床利益相关者的定性研究。该访谈指南由一位前 23 周早产儿的母亲、新生儿科医生、肺科医生、护士和定性研究员制定。有目的的抽样获得了异质的社会人口和专业群体。受试者讨论了他们的边缘性人格障碍经历、护理障碍、护理人员的生活质量和健康教育。采访内容均经过录音、转录和编码。使用了主题分析。

结果

18 位家长和 20 位利益相关者完成了访谈。家庭层面的主题包括实用障碍，例如交通是多方面的；护理工作对心理健康造成压力。系统级主题包括护理人员教育，需要平衡当前的护理活动与未来的健康结果；整合初级保健、专业和社区支持。

结论

个人和系统障碍影响边缘性人格障碍婴儿的随访。该概念框架可用于衡量和改善护理。