‘They don't know themselves, so how can they tell us?’: parents navigating uncertainty at the frontiers of neonatal surgery

Abstract

When a baby is diagnosed with a condition needing surgery they, and their family, start down an uncertain and unknown path. Living with uncertainty underpins every stage of the journey from hospital to home. These journeys span the highly technical to the mundane. They are likely to involve, at crucial points, medicalised and specialised neonatal and surgical care in paediatric centres of excellence where parents are mere spectators. Yet ultimately parents are able to take their baby home, confident experts in their daily care. Drawing on narrative interviews with 42 UK parents whose baby underwent neonatal surgery, this paper explores how parents navigate this uncertainty through acquiring experiential and lay knowledge and developing expertise in their baby's condition and treatment options. These conditions are rare. Building on sociological understandings of the work of chronic illness, as well as more recent work on newborn screening, sharing information online and examinations of experiential knowledge, we explore lay knowledge and expertise as it intersects with biomedical and surgical frontiers. We demonstrate how the development of expertise is an emergent, three‐stage process supported by both biomedical and lay knowledge and elucidate this process of knowledge‐building as a scaffold through which to manage uncertainty.

The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’

“…19,20 Although the original study was designed to explore parents' experiences of having a baby who needed abdominal surgery, many parents talked extensively about the longterm impact of caring for their children at home, which has not yet been explored in publications from this data set. 19,21 The interviews began with unstructured narrative prompted by an open-ended question and were followed up by a semi-structured component following up on issues raised by parents and themes suggested by the literature and advisory panel. The open narrative approach to the interviews lends itself to supra analysis, that is secondary analysis of an existing data set to investigate a different question to that of the primary research.…”

Understanding the co‐construction of safety in the paediatric intensive care unit: A meta‐ethnography of parents' experiences

“…Temporality holds significance for parents experiencing PICU, given that time is filled with flux and change amidst clinical and prognostic uncertainty (Mackintosh & Armstrong, 2020). This evidence synthesis builds on previous studies that highlight the work parents undertake to navigate and cope with the multiple uncertainties associated with children's clinical conditions and the technical and practical competence they develop to care for their children at home (including interpretive skills around when to seek help) (Hinton & Armstrong, 2020).…”

Understanding and managing uncertainty in health care: revisiting and advancing sociological contributions

“…2020, Mol 2008, p. 22). Interactional work is also needed to police epistemic boundaries between patients and clinicians (Hinton and Armstrong 2020), in order to ensure interpretive divides do not lead to a form of ‘epistemic injustice’, as certain knowledge claims are dismissed (Cetina 1999, Fricker 2007). Placing value on people rather than behaviours or tasks to emphasise the social elements of diagnosis may offer a way to reimagine care, and could offer space to flatten hierarchies and acknowledge lay/professional differences (Chandler et al .…”

“…Healthcare professionals’ activation of knowledge related to ‘evidence‐based risk reduction’ serves to frame patients’ queries as barriers to be overcome rather than meaningfully engaged with. In contrast, Hinton and Armstrong (2020) in their paper highlight the varying forms of uncertainty acknowledged by both healthcare professionals and parents in the context of neonatal surgery in order to explore the complex journeys through these uncertainties and how parents navigate these. They demonstrate that uncertainty is an integral part of the experience of parents in this clinical context, taking on different guises as it shifts from uncertainty about whether their baby will survive through to managing uncertainties in their child’s care when they get home.…”

“…The only paper in this collection to focus on non‐healthcare professionals’ management of uncertainty is that by Hinton and Armstrong (2020), focusing as it does on the experiences of parents whose babies required neonatal surgery. Drawing attention to the practical illness and knowledge production work in which parents engage as they negotiate their roles and the boundaries between the lay and the clinical, Hinton and Armstrong show how in the face of considerable uncertainties, parents develop the technical and practical competence to care for their babies at home, and the knowledge and confidence to be able to interpret signs and symptoms and exercise judgement in whether to seek additional care.…”