ABSTRACT
PURPOSE: The study aims to investigate factors influencing parents' satisfaction with hospital care for children with craniosynostosis during hospitalization for surgery. DESIGN AND METHODS: A mixed-methods study with a convergent, parallel design was used. Ninety-five parents responded to the Swedish Pyramid Questionnaire for Treatment, a 25-item questionnaire with six quality domains. In addition, 20 parents were interviewed about their experiences. Frequencies were calculated, and content analysis was used to analyze free-text comments and transcribed interviews. RESULTS: Parents' assessment of the overall quality of care was high (mean 87%, range 10-100%). They were most satisfied in the domain staff attitudes and less satisfied with information routines and participation. Content analysis of the interviews gave two overarching themes: Factors that parents experienced as facilitating good quality of care and Factors that parents experienced as impeding good quality of care. CONCLUSIONS: Parents were generally satisfied with the care provided, and interviews captured parents´ views on important factors. Staff attitudes affected parents' perception of quality of care. PRACTICAL IMPLICATIONS: Clear information and dialogue as well as making parents feel they are part of their child's team can result in higher satisfaction, and allowing families to stay together in the hospital can ease the hospitalization experience. Using a theoretical model can help in suggesting relevant caring actions based on parents' reported care experiences.
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.
