They don't know themselves, so how can they tell us

Parents Navigating Uncertainty at the Frontiers of Neonatal Surgery

Bibliographic Data

ID2249705
AuthorsLisa Hinton (0000-0002-6082-3151, Department of Public Health and Primary Care THIS Institute University of Cambridge Cambridge UK, corresponding author), N Armstrong (0000-0003-4046-0119, Social Science Applied to Healthcare Improvement Research (SAPPHIRE) Group Department of Health Sciences University of Leicester Leicester UK)
Year2020
Volume42
IssueS1
Pages51-68
Publication date2020-08-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSociology of Health & Illness (JOURNAL)
Journal identifiersISSN: 0141-9889 • E-ISSN: 1467-9566
PublisherWiley (PUBLISHER • GB)
DOI10.1111/1467-9566.13073
PMID32275334
OpenAlexW3015749421
LanguageEN
Citations received7
References cited52

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

Epistemology · Excellence · Experiential knowledge · Experiential learning · Narrative · Pedagogy · Process (computing) · Adolescent and Pediatric Healthcare · Child and Adolescent Health · Computer Science · Family and Patient Care in Intensive Care Units · Medicine · Nursing · Psychology