Parental estimation of early psychological development in children operated on for single suture synostosis.

Impaired psychological development in children with single suture craniosynostosis is often described in the literature. The authors' own experience was that these children appeared to have normal psychological development during their first years of life. The aim of the present study was, therefore, to evaluate if parental estimation would reveal any shortcomings in psychological development. All consecutive patients operated on for non-syndromal single suture synostosis between October 2002 and June 2006 were included (n = 66). A questionnaire was filled out by the parents when the child was 3 years old. The questions concerned development of speech, motor control, personal abilities, and emotional development. The results were compared with randomly selected controls of the same age (n = 180) whose parents answered the same questionnaire. The results showed that children operated on for single suture synostosis did not show any signs of lasting disadvantages due to craniofacial surgery. The children did not in any respect suffer from a hampered psychological development up to 3 years of age. In summary the psychological development of patients operated on for single suture synostosis seems to be normal up to 3 years of age as far as parental estimation can reveal.

Living with facial disfigurement--strategies for individuals and care management.

Individuals and families affected by craniofacial disorders have expressed dissatisfaction with their experiences in the healthcare system, with day care, and in school situations. To capture their views, focus group encounters were done in a group of young individuals with these disorders and in a group of parents whose children were affected. The aim was to synthesize their attitudes and experiences into improved strategies for parents, teenagers, and professionals in the healthcare system. Their views were compiled into a document that emphasizes the responsibilities of persons with craniofacial disorders and their parents to actively seek information on diagnosis and treatment options and to participate in decisions on therapy. The conclusion was that it is not lack of specific knowledge but rather a lack of implementation of existing recommendations that makes living with facial disfigurement difficult for many individuals and their families.