Next Article in Journal
Implementation of Second-Tier Tests in Newborn Screening for Lysosomal Disorders in North Eastern Italy
Previous Article in Journal
A Newborn Screening Education Best Practices Framework: Development and Adoption
Open AccessArticle

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

1
Division of Psychology & Mental Health, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Oxford Road, Manchester M13 9PL, UK
2
Institute of Translational Medicine, University of Liverpool, Liverpool L12 2AP, UK
*
Author to whom correspondence should be addressed.
Int. J. Neonatal Screen. 2019, 5(2), 23; https://doi.org/10.3390/ijns5020023
Received: 26 March 2019 / Revised: 30 April 2019 / Accepted: 28 May 2019 / Published: 11 June 2019
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. View Full-Text
Keywords: newborn screening; qualitative; communication; CFSPID; uncertainty; impact; psychological; parent newborn screening; qualitative; communication; CFSPID; uncertainty; impact; psychological; parent
MDPI and ACS Style

Johnson, F.; Southern, K.W.; Ulph, F. Psychological Impact on Parents of an Inconclusive Diagnosis Following Newborn Bloodspot Screening for Cystic Fibrosis: A Qualitative Study. Int. J. Neonatal Screen. 2019, 5, 23.

Show more citation formats Show less citations formats
Note that from the first issue of 2016, MDPI journals use article numbers instead of page numbers. See further details here.

Article Access Map by Country/Region

1
Back to TopTop