posted on 2020-04-08, 16:26authored byLisa Hinton, Natalie Armstrong
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.
Funding
National Institute for Health Research. Grant Number: NIHR‐RP-011‐032
National Institute for Health Research Biomedical Research Centre. Grant Number: BRC‐125-20008
National Institute for Health Research (NIHR) Applied Research Collaboration East Midlands (ARC EM)
History
Citation
Sociology of Health and Illness, Volume 42, Issue S1, Special Issue: Understanding and Managing Uncertainty in Healthcare: Revisiting and Advancing Sociological Contributions, August 2020, Pages 51-68