Parenting through place‐of‐care disruptions: A qualitative study of parents' experiences of neonatal care

Introduction: 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. Methods: 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. Findings: 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. Conclusion: 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. Patient or Public Contribution: 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

Managerial thinking in neonatal care: a qualitative study of place of care decision-making for preterm babies born at 27–31 weeks gestation in England

Objectives: Preterm babies born between 27 and 31 weeks of gestation in England are usually born and cared for in either a neonatal intensive care unit or a local neonatal unit—with such units forming part of Operational Delivery Networks. As part of a national project seeking to optimise service delivery for this group of babies (OPTI-PREM), we undertook qualitative research to better understand how decisions about place of birth and care are made and operationalised. Design: Qualitative analysis of ethnographic observation data in neonatal units and semi-structured interviews with neonatal staff. Setting: Six neonatal units across two neonatal networks in England. Two were neonatal intensive care units and four were local neonatal units. Participants: Clinical staff (n=15) working in neonatal units, and people present in neonatal units during periods of observation. Results: In the context of real-world neonatal practice, with multiple (and rapidly-evolving) uncertainties relating to mothers, babies and unit/network capacity, ‘best place of care’ protocols were only one element of much more complex decision-making processes. Staff often made judgements from a less-than-ideal starting point, and were forced to respond to evolving clinical and organisational factors. In particular, we report that managerial considerations relating to demand and capacity organised decision-making; demand and capacity management was time-consuming and generated various pressures on families, and tensions between staff. Conclusions: Researchers and policymakers should take account of the organisational context within which place of care decisions are made. The dominance of demand and capacity management considerations is likely to limit the impact of other improvement interventions, such as initiatives to integrate families into the neonatal care provision. Demand and capacity management is an important element of neonatal care that may be overlooked, but significantly organises how care is delivered