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Understanding families' experiences following a diagnosis of non-syndromic craniosynostosis: a qualitative study
Victoria Kuta1, Lauren Curry2, Daniel McNeely3
1Division of Otolaryngology, Dalhousie University, Halifax, Nova Scotia, Canada.
Insights
The diagnosis and surgical correction of craniosynostosis cause significant stress for families. This study explored these psychosocial experiences, revealing key challenges and sources of relief for parents navigating this journey.
Area of Science:
- Pediatric Surgery
- Child Psychology
- Family Studies
Background:
- Craniosynostosis diagnosis and surgical correction occur early in life.
- The process is highly stressful for affected families.
- Limited research exists on the family impact of craniosynostosis.
Purpose of the Study:
- To qualitatively examine the psychosocial experience of families with a child diagnosed with craniosynostosis.
- To understand parental challenges from diagnosis through surgical correction.
Main Methods:
- Qualitative study involving semistructured interviews with mothers.
- Participants were mothers of children with single-suture, non-syndromic craniosynostosis.
- Thematic analysis was used to interpret interview data.
Main Results:
- Preoperative themes included frustration with diagnostic delays, understanding expectations, and justifying surgery.
- Postoperative themes focused on overcoming fear and experiencing relief from reduced parental anxiety and cosmetic improvements.
- Key factors influencing experiences were parental intuition, healthcare support, surgeon influence, and fear of the unknown.
Conclusions:
- Craniosynostosis diagnosis and treatment profoundly impact families, presenting numerous struggles.
- Understanding these family experiences is crucial for improving future care.
- This research provides insights to enhance support for families facing craniosynostosis.
Objectives:
Craniosynostosis 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.
Design:
Qualitative study.
Setting:
Tertiary care paediatric health centre.
Participants:
Mothers 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:
Thematic analysis, a type of qualitative analysis that provides an in-depth account of participant's experiences, was used to analyse the interview data.
Results:
Over 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).
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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