Parental Wellbeing Following SSC Diagnosis V1
Research type
Research Study
Full title
Exploring the Experience of Parents Whose Children Have Been Diagnosed with Single-Suture Craniosynostosis (SSC): A Focus on Protective & Risk Factors for Psychological Wellbeing
IRAS ID
311913
Contact name
Laura Soulsby
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 7 months, 29 days
Research summary
A diagnosis of a craniofacial condition can significantly impact on the psychological well-being of parents/guardians and the family unit. Complex emotional responses of grief, shock, anger and worry are known to have been reported, in addition to raised levels of stress. In parents of infants with a craniofacial diagnosis, these emotional responses have been associated with psychological outcomes for both the parent and the infant. This highlights the importance of investigating the factors that affect psychological adjustment in this population.
Historically, research into craniofacial conditions has focused predominantly on those affected by cleft lip and/or palate whilst other diagnoses, such as craniosynostosis, have received much less attention. Craniosynostosis is a condition in which one or more of the skull sutures are prematurely fused. It can be divided into two main groups: syndromic and non-syndromic (also referred to as ‘single-suture’ craniosynostosis; SSC).
The four nationally designated craniofacial centres in England are keen to focus on developing greater parental support for their patients which, in combination with a limited evidence base, prompted the development of this project.
Parents/guardians with a child recently diagnosed with SSC will be recruited from two of these national craniofacial centres: Alder Hey Children’s Hospital and Birmingham Women's and Children’s Hospital. Parents/guardians will be invited to participate in an interview which will last approximately 60 minutes. Questions will ask parents/guardians about their experiences of their child receiving the diagnosis. The study aims to explore what elements of these experiences may hinder or facilitate psychological wellbeing in parents/guardians.
The study is funded by the University of Liverpool, as part of a Doctoral-level project. The student researcher is currently enrolled on the Doctorate in Clinical Psychology programme.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
22/NW/0190
Date of REC Opinion
30 Jun 2022
REC opinion
Further Information Favourable Opinion