Objectives The aim of our study was to investigate subjective information concerning parental experiences and preferences with regard to the initial information that is provided right after the birth of a child with microtia. The analysis of these data is intended to help professionals improve the way in which such conversations are conducted. As a result, future parents may feel better informed and, hence, better fit to cope with challenges they may encounter having a child with microtia. Methods A self-administered questionnaire was sent to 106 parents and caretakers of children with microtia who visited the annual International Microtia and Atresia Conference in the Netherlands, May 2016. Results Eighty-seven questionnaires were returned (response rate 82%). Results revealed that 26% of the participants did not receive any information about the condition in the perinatal period. Participants who did receive information right after birth were informed by pediatricians and otolaryngolosits in most of the cases. Plastic surgeons and maxillofacial surgeons were the less commonly serving specialties in this role. A majority of the participants experienced their informing consultation as either being “terrible” or “bad”. Parents desired more information about all domains regarding microtia. Development, clothing and appearance, and psychology were believed to be the least important domains. Conclusions Parents are dissatisfied with several aspects of the initial information that is provided right after the birth of a child with microtia. We believe that there is a need for correct information and patient- and family centered care administered by multiple disciplines.
|Journal||International Journal of Pediatric Otorhinolaryngology|
|Publication status||Published - 2018|