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Children with Apert syndrome: behavioural problems and family stress
1Kinderzentrum München, Germany.
Insights
Children with Apert syndrome adapt socially, but parents face significant stress regarding appearance and behavior. This highlights a need for parental psychological support and counseling services.
Area of Science:
- Medical Genetics
- Developmental Biology
- Psychology
Background:
- Apert syndrome involves craniosynostosis, midface hypoplasia, and syndactyly.
- Understanding the psychosocial impact on affected children and their families is crucial.
Purpose of the Study:
- To assess the social functioning of children with Apert syndrome.
- To identify sources of parental stress and psychological difficulties in caregivers.
Main Methods:
- A preliminary survey utilizing postal questionnaires.
- Involved parents of 41 children diagnosed with Apert syndrome.
Main Results:
- Children with Apert syndrome demonstrated fair social functioning despite their condition.
- Parental stress was linked to appearance acceptance, behavioral issues, and low self-esteem.
- A significant number of parents scored in a range indicating high parental stress.
Conclusions:
- Apert syndrome presents psychosocial challenges for families.
- Targeted psychological counseling is recommended for parents of children with Apert syndrome.
- Further research is needed to explore long-term psychosocial outcomes.
Abstract:
Apert syndrome is characterized by severe craniosynostosis, midface hypoplasia, and symmetric syndactyly of the hands and sometimes of the feet. In this study, postal questionnaires were completed by parents of 41 children with Apert syndrome. Data from this preliminary survey revealed that the children functioned fairly well socially despite their disabilities and potential for psychological difficulties. Parents suffered from stress caused by problems over acceptance of the child's appearance, the child's behavioural problems, and parental low self-esteem. Ten mothers and eight fathers scored in the deviant range for parental stress, suggesting a need for psychological counselling.