Department of Pediatrics, Division of Pediatric Hospital Medicine, University of Pittsburgh School of Medicine (JA Yu and C Imming), Pittsburgh, Pa; Palliative Research Center (PaRC), University of Pittsburgh School of Medicine (JA Yu and Y Schenker), Pittsburgh, Pa.
Department of General Pediatrics, Division of Complex Care, Boston Children's Hospital (S Cook), Boston Mass.
Acad Pediatr. 2022 Jan-Feb;22(1):107-115. doi: 10.1016/j.acap.2021.05.012. Epub 2021 May 19.
Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers' perceptions of what constitutes high-quality care at a complex care center.
We conducted a cross-sectional qualitative study of family caregivers of CMC receiving care at a pediatric complex care center situated within a tertiary-care children's hospital. In-depth, semistructured interviews focused on caregivers' general experiences at the clinic, positive and negative experiences related to core components of the pediatric medical home, and recommendations for improvements. We thematically analyzed transcripts through a mixed inductive and deductive approach, using constant comparative methodology, with the pediatric medical home model as an organizing framework.
We conducted interviews with 20 participants (18 [90%] biological parents; 19 [95%] female; mean age 39 years) in outpatient settings. Caregivers described 2 major themes: 1) the value of having a clinician "quarterback" who is in-charge of their child's care and caregivers' go-to for questions and concerns, and 2) wanting clinicians who are personally invested in and willing to "go above and beyond" for their child. Participants discussed how and which components of the medical home model enable CMC clinicians to meet these needs.
Family caregivers of CMC want clinicians who take responsibility for managing their child's overall care and demonstrate personal commitment to ensuring their child's well-being. Multiple aspects of the medical home framework, rather than care coordination alone, help meet caregivers' perceptions of high-quality complex care.
儿科综合护理中心是满足医疗复杂性儿童（CMC）需求的一种日益常见的方法。我们试图更好地了解 CMC 护理人员对综合护理中心高质量护理的看法。
我们对在一家三级儿童医院内的儿科综合护理中心接受护理的 CMC 的家庭护理人员进行了一项横断面定性研究。深入的半结构式访谈重点关注护理人员在诊所的一般体验、与儿科医疗之家核心组成部分相关的积极和消极体验，以及改进建议。我们采用混合归纳和演绎的方法，通过不断比较的方法，以儿科医疗之家模型为组织框架，对转录本进行主题分析。
我们在门诊环境中对 20 名参与者（18 名[90%]为亲生父母；19 名[95%]为女性；平均年龄 39 岁）进行了访谈。护理人员描述了两个主要主题：1）有一个负责他们孩子的护理并能回答他们的问题和关注的临床医生“指挥”的价值，以及 2）希望有对他们的孩子有个人投入并愿意“超越”的临床医生。参与者讨论了医疗之家模式的哪些部分以及如何使 CMC 临床医生能够满足这些需求。
CMC 的家庭护理人员希望有临床医生负责管理他们孩子的整体护理，并表现出对确保孩子福祉的个人承诺。医疗之家框架的多个方面，而不仅仅是协调护理，有助于满足护理人员对高质量综合护理的看法。
