Department of Population Health Sciences, University of Leicester, Leicester, UK.
Centre for Health and Society, Aston University, Birmingham, UK.
Health Expect. 2024 Feb;27(1):e13933. doi: 10.1111/hex.13933.
Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place-of-care decisions, or the social organisation of those practices.
As part of a wider study exploring optimal place-of-care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27-31 weeks gestation) cared for in a neonatal unit in the last 12 months.
We highlight parents' labour-intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place-of-care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place-of-care decision-making and other efficiency-focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities.
Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families.
The OPTI-PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences-as reported in this paper. The OPTI-PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life-changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co-author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation.
新生儿护理是一项复杂的工作，涉及到社区中多个人员和技术的参与。当早产儿需要在离家较远的地方接受护理，或者在不同的单位之间进行转移时，整个护理社区（特别是家长的参与）都会受到干扰。尽管之前的研究已经捕捉到了家长的主观体验，但很少有研究探索由于护理地点决策而导致的家长所采取的物质实践，或者这些实践的社会组织。
作为一项探索最佳护理地点的更广泛研究的一部分，我们在 2018 年 7 月至 2019 年 10 月期间对 48 名父母（36 个家庭）进行了半结构化访谈，这些父母的一个或多个早产儿（在 27-31 周时出生）在过去 12 个月内被安置在新生儿病房中。
我们强调了家长们为：（1）参与新生儿护理社区（超越了当代“参与”概念的监督角色）；（2）在护理地点中断期间创造连续性；以及（3）适应新生儿护理环境的管理逻辑，所付出的劳动密集型和紧张的工作。我们的分析重点是组织护理地点决策和其他注重效率的实践的管理系统所产生的工作。家长们被卷入到协商机构系统中，从而偏离了常规的育儿活动。
参与新生儿护理组织和管理的人员应该考虑到管理系统如何影响家长的工作量、参与婴儿护理社区的能力，以及最终影响婴儿及其家庭的健康和发展。
OPTI-PREM 研究通过一个独立的工作流，将家长的新生儿护理体验嵌入到研究中，该工作流采用了定性方法来捕捉家长的体验，正如本文所报告的那样。OPTI-PREM 项目还得到了 Bliss 志愿者家长小组的支持，该小组参与了研究的设计和监督。Bliss“倡导每个早产儿或患病的婴儿都有权利获得最佳护理，为此，我们支持家庭，倡导变革，支持专业人士，并开展改变生活的研究”（https://www.bliss.org.uk/about-us/about-bliss）。 Bliss 的一名代表是本文的合著者之一，一名家长代表（在致谢中列出）在其准备过程中提供了反馈。
