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Parents' Experiences of Their Child's Craniosynostosis and the Initial Care Process
Anna Stenson Zerpe1,2, Daniel Nowinski1,2, Mia Ramklint3
1Department of Surgical Sciences, Uppsala University.
Insights
Parents of children with craniosynostosis desire more information early in the diagnosis process. They found the craniofacial team helpful but had concerns about surgery and long-term outcomes.
Area of Science:
- Pediatric Surgery
- Craniofacial Anomalies
- Parental Experience
Background:
- Craniosynostosis, a condition of premature skull fusion, requires surgical intervention.
- Optimal care involves interdisciplinary specialists at craniofacial centers.
- Parental experiences with initial diagnosis and care are not well-documented.
Purpose of the Study:
- To investigate Swedish parents' experiences with their child's craniosynostosis diagnosis.
- To understand parental perceptions of the initial care pathway.
- To identify areas for improvement in supporting families.
Main Methods:
- Semistructured telephone interviews with 20 parents (10 mothers, 10 fathers).
- Participants were parents of children with nonsyndromic craniosynostosis.
- Thematic data analysis was used to identify key themes.
Main Results:
- Parents reported a journey from detection to surgery, encompassing pre-appointment feelings, team interactions, online information seeking, and waiting periods.
- While the craniofacial team was informative, parents expressed significant concerns regarding surgery and long-term prognosis.
- Most parents lacked prior knowledge and desired earlier, more comprehensive information upon detection.
Conclusions:
- Parents of children with craniosynostosis seek more information throughout the diagnostic and treatment process.
- Enhanced communication and information provision at the point of detection are crucial.
- Addressing parental concerns about surgical outcomes and long-term prognosis is vital for supportive care.
Abstract:
Craniosynostosis is usually diagnosed in early infancy. Treatment almost always involves surgery and care is optimally organized around an interdisciplinary team of specialists at a craniofacial center. This study aimed to investigate Swedish parents' experiences of having a child with craniosynostosis and their perceptions of the initial care process. Semistructured telephone interviews were conducted with 20 parents (10 fathers and 10 mothers) of children with nonsyndromic craniosynostosis who were undergoing surgery at the Uppsala Craniofacial Center. A thematic data analysis revealed 6 themes presented in a timeline following the parents' journey from detection of their child's abnormal skull shape to waiting for surgery: Detection of the abnormal skull shape, thoughts, and feelings before the appointment with the craniofacial team, an appointment with the craniofacial team, searching the Internet and social media, waiting for surgery, and suggestions for improvement. Although meeting with the craniofacial team was considered informative, parents expressed concerns about surgery and their infant's long-term prognosis were evident. Most parents had no previous knowledge about craniosynostosis and craniofacial syndromes and wished for more information already at the time of its detection. The Internet was used both at the time of suspicion that something was wrong with the child and later to learn about risks and consequences, alternative treatments and prognosis.
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