Psychological adjustment of young subjects with Möbius sequence and their primary caregivers’ strain and life satisfaction: First longitudinal data

• Published in: Research in developmental disabilities Vol. 85; no. NA; pp. 42 - 49
• Main Authors: Briegel, Wolfgang, Heinzel-Gutenbrunner, Monika, Beate, Yvonne
• Format: Journal Article
• Language: English
• Published: United States Elsevier Ltd 01.02.2019
• Subjects: children and adolescents; life satisfaction; longitudinal data; Moebius Syndrome; psychological,adjustment; strain; Moebius Syndrome; strain; children and adolescents; psychological,adjustment; life satisfaction; longitudinal data
• ISSN: 0891-4222; 1873-3379; 1873-3379
• DOI: 10.1016/j.ridd.2018.11.004

At present, there is no information about the course of psychological adjustment in young subjects with Möbius sequence (MS) and their parents' strain and life satisfaction. To fill this gap, we performed a four-year follow-up study. Parents were anonymously asked to fill out the Child Behavior Checklist 4-18 [CBCL/ 4-18] or the Young Adult Behavior Checklist 18-30 [YABCL/ 18-30] and the Freiburger Personality Inventory-Revised [FPI-R], subscales strain and life satisfaction. 12 males and 14 females (mean: 15.20 years, standard deviation: 3.48 years) could be included in the follow-up (response rate: 83.9%).Compared to the general population, subjects with MS showed significantly higher scores on almost all CBCL scales (exception: externalizing problems) at T1 and T2. At both study times, parental strain and life satisfaction were not significantly different from findings in the general population. No significant longitudinal changes could be found for CBLC scales, parental strain and life satisfaction. Problems with psychological adjustment seem to be frequent among younger subjects with MS. Therefore, careful monitoring as well as early and adequate interventions, if indicated, are crucial for subjects with MS, not only with regard to somatic complaints but also to aspects of adjustment.