Data from: Understanding families' experiences following a diagnosis of non-syndromic Craniosynostosis: A qualitative study

Objectives: Craniosynostosis, a congenital anomaly producing an abnormal
cranial morphology, is typically diagnosed and surgically corrected within
the first year of life. Given the young age of this patient population at
the time of diagnosis, it is reasonable to expect this experience to be a
very significant and stressful ordeal for patient families. Despite this,
there is little research exploring the impact that craniosynostosis has on
families, especially in the early stages. In this study, the authors aimed
to qualitatively examine the psychosocial experience of families with a
child diagnosed with craniosynostosis. Design: Qualitative study. Setting:
Tertiary care paediatric health centre. Participants: Parents of children
newly diagnosed with single-suture, non-syndromic craniosynostosis
Intervention: Semistructured interviews regarding parental experience with
the initial diagnosis, their decision on corrective surgery for their
child, the operative experience, the impact of craniosynostosis on the
family and the challenges they encountered throughout their journey.
Primary and Secondary Outcome Measures: Interpretive phenomenological
analysis, a type of qualitative analysis that provides an in-depth account
of participant’s experiences and their meanings, was used to analyze the
interview data. Results: Over a four-year period, twelve families meeting
eligibility criteria completed the study. Three main themes (6 subthemes)
emerged from the pre-operative interviews: frustration with diagnostic
delays (parental intuition and advocacy, hope for improved awareness),
understanding what to expect (healthcare supports, interest in connecting
with other families), and justifying the need for corrective surgery
(influence of the surgeon, struggle with cosmetic indications). Two main
themes (4 subthemes) were drawn from the post-operative interviews:
pushing through fear (the role of healthcare professionals, transition
home) and relief (reduction in parental anxiety, cosmetic improvements).
Conclusions: Overall, the diagnosis of craniosynostosis has a profound
impact on families, leading them to face many struggles throughout their
journey. A better understanding of these experiences will help to inform
future practice, with a hope to improve this experience for other families
moving forward.