Understanding families’ experiences following a diagnosis of non-syndromic craniosynostosis: a qualitative study

Abstract

ObjectivesCraniosynostosis is typically diagnosed and surgically corrected within the first year of life. The diagnosis and surgical correction of the condition can be a very stressful experience for families. Despite this, there is little research exploring the impact that craniosynostosis has on families, especially in the period immediately following diagnosis and correction. In this study, the authors aimed to qualitatively examine the psychosocial experience of families with a child diagnosed with craniosynostosis.DesignQualitative study.SettingTertiary care paediatric health centre.ParticipantsMothers of children newly diagnosed with single-suture, non-syndromic craniosynostosis.InterventionSemistructured 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 measuresThematic analysis, a type of qualitative analysis that provides an in-depth account of participant’s experiences, was used to analyse the interview data.ResultsOver a 4-year period, 12 families meeting eligibility criteria completed the study. Three main themes (six subthemes) emerged from the preoperative 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 (four subthemes) were drawn from the postoperative interviews: overcoming fear (the role of healthcare professionals, transition home) and relief (reduction in parental anxiety, cosmetic improvements).ConclusionsOverall, 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.

“When the surgery was over, I felt like the worst part had passed”: experiences of parents of children with craniosynostosis

“…| 7 of 10 study about parental experiences of the time for identification of craniosynostosis (Zerpe et al, 2020). These results contradict those of another study where parents, after surgery, no longer worried about neurological deficits or their child not meeting developmental milestones (Kuta et al, 2020). This difference may be explained by the time-point for the interview.…”

“…This difference may be explained by the time-point for the interview. Parents in the study by Kuta et al (2020) were interviewed 3 months after surgery, while parents in our study were contacted after a year. It may be that thoughts and worries about the child's development over time become more evident as the child grows.…”

“…Possibly, it was also a way for them to continue to process their own experience. Kuta et al (2020) found that while parents acted as advocates for their own children in the preoperative period, they advocated for the craniosynostosis community at large in the postoperative period.…”

“…In a Canadian study, parents reported significant anxiety before their child's surgery, even though they felt well‐informed. After surgery, parents described that they felt relieved, but there were also descriptions of further challenges when they left the hospital for home (Kuta et al, 2020 ). After surgical treatment, parents of children with craniosynostosis mostly report high satisfaction with the interdisciplinary craniofacial care provided (Kluba et al, 2016 ; Kuta et al, 2020 ; Wong‐Gibbons et al, 2009 ).…”

Comparative between Syndromic and Nonsyndromic Craniosynostosis: A Literature Review

“…Reported postoperative complications include infection, failure of reossification, contour irregularity, and need for reoperation. 14…”