Background: 

Parents in the neonatal intensive care unit (NICU) report low self-confidence managing their children's ongoing medical and social needs. While bedside nurses provide critical support for families throughout their NICU admission, there may be a role for nursing coordination throughout hospitalization, discharge, and in the transition to outpatient care.

Purpose: 

This program evaluation explores parent and provider experiences of a novel longitudinal care coordination program for infants with medical complexity from the NICU through their first year of life post-discharge.

Methods: 

First, a sequential exploratory mixed-methods approach was used to evaluate parental experiences (n = 5 interviewed followed by n = 23 surveyed). Provider perspectives were elicited through semi-structured interviews (n = 8) and focus groups (n = 26 in 3 groups).

Results: 

Parent-reported benefits included frequent communication and personalized support that met families' and patients' evolving needs. Care coordinators, who were trained as nurses and social workers, developed longitudinal relationships with parents. This seemed to facilitate individualized support throughout the first year of life. Providers reported that smaller caseloads were central to the success of the program.

Implications for Practice and Research: 

This longitudinal care coordination program can be used as a translatable model in NICUs elsewhere to address the unique needs of families of infants with medical complexity throughout the first year of life. Future implementations should consider how to expand program size while maintaining individualized supports. As the care coordinators are former NICU nurses and social workers, there may be a growing role for nursing coordination of care in the neonatal population.

中文翻译：

---

家庭和提供者对医疗复杂性婴儿进行纵向护理协调的经验

背景： 

新生儿重症监护病房 (NICU) 的家长表示，他们对管理孩子持续的医疗和社会需求缺乏信心。虽然床边护士在新生儿重症监护病房入院期间为家庭提供关键支持，但在整个住院、出院和向门诊护理过渡的过程中，护理协调也可能发挥作用。

目的： 

该计划评估探讨了家长和提供者对新型纵向护理协调计划的体验，该计划针对从 NICU 到出院后第一年的医疗复杂性婴儿。

方法： 

首先，采用顺序探索性混合方法来评估父母的经历（n = 5 名受访者，随后 n = 23 名受访者）。通过半结构化访谈 (n = 8) 和焦点小组 (n = 26 人，分为 3 组) 来征求提供者的观点。

结果： 

家长报告的好处包括频繁的沟通和满足家庭和患者不断变化的需求的个性化支持。接受过护士和社会工作者培训的护理协调员与家长建立了纵向关系。这似乎促进了整个生命第一年的个性化支持。提供商报告称，较小的病例量是该计划成功的关键。

对实践和研究的影响： 

这种纵向护理协调计划可以用作其他地方新生儿重症监护室的可转化模型，以满足具有医疗复杂性的婴儿家庭在生命第一年的独特需求。未来的实施应考虑如何在保持个性化支持的同时扩大项目规模。由于护理协调员是前 NICU 护士和社会工作者，因此护理协调在新生儿群体中的作用可能越来越大。