Psychological adaptation to CFSPID diagnosis
Research type
Research Study
Full title
Exploring parents' short term psychological adaptation to CFSPID diagnosis
IRAS ID
219764
Contact name
Fiona Ulph
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
0 years, 9 months, 31 days
Research summary
Newborn babies are tested for different types of inherited conditions shortly after birth. This is done by taking a small blood sample, and is known as newborn bloodspot screening (NBS). NBS is important because early diagnosis allows treatment as soon as possible. Developments in screening, however, increasingly mean that NBS can identify abnormalities of uncertain clinical significance. For instance, ‘Cystic Fibrosis screen positive, inconclusive diagnosis’ (CFSPID) is a descriptive label applied to infants that are identified as having a significant biomarker for cystic fibrosis, but that do not have a definitive diagnosis of the disease. Evidence suggests that while a small but significant number of CFSPID children will develop some form of cystic fibrosis, the majority are healthy and will never develop cystic fibrosis in any manifestation.
Whereas the benefits of early detection of a treatable disease through NBS are clear, it is not as clear what the benefits of recognising CFSPID are or even whether identification may cause harm. At present there is limited information about the psychological consequences for parents of children with CFSPID: it has been suggested that the uncertainty of the situation may cause anxiety, alter parents’ perceived identity of themselves and their child, and potentially disrupt parent-infant bonding.
To date, much of the literature has made assumptions based on what is already known about parents of children with conclusive diagnoses or manifest disease. However, it is likely that the experience of an inconclusive diagnosis, in which the clinical manifestation of the disease may or may not ever develop, is a qualitatively different experience. This study will use an in-depth interviewing approach to explore parents’ experiences of having a baby with CFSPID. It is important to collect such information so that developments in screening policy take children and families’ needs and best interests into account.REC name
North West - Preston Research Ethics Committee
REC reference
17/NW/0667
Date of REC Opinion
4 Dec 2017
REC opinion
Favourable Opinion