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Parents navigating uncertainty at the frontiers of neonatal surgery - FOR DEPOSIT.pdf (125.45 kB)

“They don’t know themselves, so how can they tell us?”: Parents navigating uncertainty at the frontiers of neonatal surgery.

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journal contribution
posted on 2020-04-08, 16:26 authored by Lisa 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

Author affiliation

Department of Health Sciences

Version

  • AM (Accepted Manuscript)

Published in

Sociology of Health and Illness

Volume

42

Issue

S1

Pagination

51-68

Publisher

Wiley

issn

0141-9889

Acceptance date

2020-01-21

Copyright date

2020

Available date

2021-04-10

Language

en

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