Psychological Impact on Parents of an Inconclusive Diagnosis Following Newborn Bloodspot Screening for Cystic Fibrosis: A Qualitative Study

Johnson, Faye, Southern, Kevin W ORCID: 0000-0001-6516-9083 and Ulph, Fiona (2019) Psychological Impact on Parents of an Inconclusive Diagnosis Following Newborn Bloodspot Screening for Cystic Fibrosis: A Qualitative Study. INTERNATIONAL JOURNAL OF NEONATAL SCREENING, 5 (2). 23-.

Text
IJNS-05-00023-v2.pdf - Published version
Download (224kB) | Preview

Official URL: http://dx.doi.org/10.3390/ijns5020023

Abstract

Genetic results of uncertain clinical significance are being returned to parents following newborn screening, representing a paradigm change in how society considers health and illness. 'Cystic Fibrosis screen positive, inconclusive diagnosis' (CFSPID) is a designation given to newborns with a positive screening result for, but not a definitive diagnosis of, cystic fibrosis. We explored the psychological impact of receiving a CFSPID result on parents. Five semi-structured interviews were conducted with eight parents whose children have CFSPID. Interpretative phenomenological analysis identified these themes: "The way we were told": 'diagnosis as a traumatic event' focused on how parents were distressed and dissatisfied by the initial screening result communication, 'Facing and challenging traditional ideas about health and illness' explored the emerging problem of how CFSPID does not fit the commonly accepted medical model, and 'Making certainty out of uncertainty' explored the varying strategies parents developed to adapt to the uncertainty regarding their child's prognosis. Findings suggest that CFSPID results caused parents' distress, initiated with the first communication of the result and persisting thereafter. Our data suggests approaches to the delivery of CFSPID results that may reduce the impact. Work is needed to close the gap between healthcare advances and societies commonly held medical model.

Item Type:	Article
Uncontrolled Keywords:	newborn screening, qualitative, communication, CFSPID, uncertainty, impact, psychological, parent
Depositing User:	Symplectic Admin
Date Deposited:	18 Nov 2019 10:02
Last Modified:	19 Jan 2023 00:20
DOI:	10.3390/ijns5020023
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3061795