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Behaviour problems of patients with Moebius sequence and parental stress
Wolfgang Briegel1, Christina Hofmann, K Otfried Schwab
1Department of Child and Adolescent Psychiatry and Psychotherapy, Leopoldina Hospital, Schweinfurt, Germany. wbriegel@leopoldina.de
Insights
Children with Moebius sequence often experience social challenges. Their caregivers report higher stress levels, underscoring the need for early family support.
Area of Science:
- Pediatric Neurology
- Developmental Psychology
- Clinical Genetics
Background:
- Moebius sequence is a rare congenital disorder characterized by facial paralysis and impaired ocular abduction.
- Limited data exists on behavioral issues and parental stress in affected children.
- Understanding these factors is crucial for effective family counseling and support.
Purpose of the Study:
- To investigate behavioral problems in children with Moebius sequence.
- To assess parental stress levels in caregivers of these children.
- To explore the relationship between child behavior and caregiver stress.
Main Methods:
- Anonymous questionnaires, including the Child Behavior Checklist (CBCL) 4-18, were administered to parents of children diagnosed with Moebius sequence.
- Data was collected from parents affiliated with the German Moebius Syndrome Foundation.
- A cohort of 31 children (15 males, 16 females; median age 10 years 7 months) met the inclusion criteria.
Main Results:
- Ten out of 31 subjects (32.3%) exhibited clinical scores on at least one CBCL scale; three had a total problem score in the clinical range.
- Social problems were prevalent, particularly in older children (12-17 years), occurring at five times the rate of younger children.
- Caregivers reported higher stress levels compared to the general population, correlating with child's anxious/depressed behavior, aggression, externalizing problems, and total problem scores.
Conclusions:
- Social difficulties are common in children with Moebius sequence aged 4-17.
- Primary caregivers experience significant psychological strain.
- Early and comprehensive support services are essential for families impacted by Moebius sequence.
Aim:
Moebius sequence is a rare condition usually defined as congenital facial paralysis with congenital impairment of ocular abduction. At present, there is little information on behavioural problems, parental stress and possible relationships between these factors. To fill this gap, this study investigated these aspects relevant for counselling.
Methods:
Parents of 4-17 year old subjects known to the German Möbius syndrome foundation were anonymously asked to fill out several questionnaires, for example, the Child Behavior Checklist (CBCL)4-18.
Results:
The primary care givers of 41/58 subjects (70.7%) sent back filled-out questionnaires. Ten subjects did not meet the inclusion criteria; 15 males and 16 females (4; 7-17; 0 years, median age: 10; 7 years) were included. Ten out of 31 subjects were rated as clinical on at least one CBCL scale; three had a total problem score in the clinical range. Social problems were the most important problems with rates of 12-17-year old subjects being about five times as high as those of younger subjects. Compared with the general population, but not with other parents of mentally and/or physically handicapped children, the primary care givers experienced higher levels of stress, which were correlated to anxious/depressed behaviour, aggressive behaviour, externalising problems and total problem score of the children. The older a child the higher the primary care giver's life satisfaction was.
Conclusions:
Social problems seem to be frequent among 4-17-year old subjects with Moebius sequence, and primary care givers show increased strain. Therefore, families with an affected child need early and adequate support.
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