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

Cite this dataset

Kuta, Victoria et al. (2020). Data from: Understanding families' experiences following a diagnosis of non-syndromic Craniosynostosis: A qualitative study [Dataset]. Dryad.


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.

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