Parent Experiences of Syndromic Craniosynostosis
Research type
Research Study
Full title
Experiences of Parents with Children Diagnosed with Syndromic Craniosynostosis.
IRAS ID
309801
Contact name
Kerry Woolfall
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 9 months, 17 days
Research summary
Syndromic craniosynostosis is a genetic diagnosis which often involves multiple plates of the skull fusing together. Some common features include differences in head and face shape and limbs, hands, fingers and toes (Children’s Hospital of Philadelphia, 2021). The diagnosis can range in severity and can often require various medical appointments, treatment and surgeries (Children’s Hospital of Philadelphia, 2021). Whilst each diagnosis is individual to the child and family, its treatment is expected to bring many challenges to children, in particular anxiety, distress, and difficulties in social interaction (Roberts & Mathias, 2013). Parents have also been shown to have higher levels of stress and anxiety than that of the general population (Costa et al., 2020). Parents have reported frustrations at diagnostic delays and understanding what to expect, along with making decisions around treatment and surgery have also been seen (Kuta et al., 2020). Similar experiences have been seen in other healthcare diagnoses and enabling families to have more involvement of their child’s treatment was found to be empowering. There is limited research within the UK exploring parent or family experiences of craniosynostosis. Gaining a better understanding of parent experiences may help other families embarking on their own journey within the service, support staff teams in understanding the needs of families, and help guide what support is offered. To develop ways in which families can have more involvement and control over their or their child’s treatment. English speaking parents of children diagnosed with syndromic craniosynostosis over 6 months ago but within the past 10 years are eligible to participate. Interviews will be conducted with parents recruited from Alder Hey Children’s and Birmingham Children’s hospitals and social media. The study will be written up by May 2023.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
22/YH/0148
Date of REC Opinion
20 Jul 2022
REC opinion
Favourable Opinion