Zusammenfassung
Hintergrund
Lippen-Kiefer-Gaumen-Spalten (LKG-Spalten) sind die häufigsten orofazialen Missbildungen und können die kognitive und soziale Entwicklung des betroffenen Kindes beeinträchtigen. Die Eltern dieser Kinder müssen dessen Behinderung und den langjährigen Behandlungsaufwand bewältigen. Für die optimale Entwicklung des Kindes müssen die Eltern in die Therapie einbezogen werden.
Methoden
Zur Erfassung der Belastung und der Bewältigungsformen der Eltern von Kindern mit LKG-Spalten wurde der standardisierte Fragebogen (SOEBEK) im Rahmen der Spaltsprechstunde eingesetzt.
Ergebnisse
Offenbar erleben die Eltern von LKG-Kindern die Störung subjektiv nicht als eine tiefgreifende Beeinträchtigung. Sie nutzen Bewältigungsstrategien wie die Intensivierung der Partnerschaft, die Nutzung sozialer Unterstützung, die Selbstbeachtung und die Selbstverwirklichung, weniger die Fokussierung auf das Kind. Berufstätige Mütter sind insgesamt weniger belastet. Eine verstärkte Fokussierung zeigen Eltern, deren Kinder zusätzlich verhaltensauffällig sind.
Diskussion
Offenbar erleben Eltern von LKG-Kindern die Störung nicht als eine tiefgreifende Beeinträchtigung ihres subjektiven Erlebens. Das Spektrum möglicher Bewältigungsstrategien sollte bekannt sein, um im Rahmen der regelmäßigen Kontrolluntersuchungen einer Spaltsprechstunde noch bestehende Belastungen zu hinterfragen und bei der lösung von Problemen durch gezielte Elternarbeit aktiv zu unterstützen.
Das eingesetzte Testinstrument erscheint sehr gut geeignet, gezielte Interventionen zu leiten.
Abstract
Background
Cleft lip and palate are the most common malformation in the orofacial region. The type and dimension of the cleft determine the functional limitations of respiration, swallowing, speech, articulation and hearing. In addition, cosmetic and communicative restrictions influence the cognitive, social and educational progress and the wellbeing of the children affected. Their parents face a difficult and lasting task: They have to cope with their child's handicap and the current standardised treatment procedures which start in early infancy. To guarantee optimum therapeutic success parents must be included as co-therapists. Therefore more information about parents' concerns and coping strategies are required.
Method
To assess the strain put on parents of children with cleft lip and palate as well as the parents' coping strategies, a standardised questionnaire for the German-speaking parents was used during consultation in the out-patient clinic.
Results
In comparison with parents of children with other handicaps, the parents of children with cleft lip and palate feel less stressed out and adopt strategies of coping such as intensification of partnership, use of social support, as well as self-respect and fulfilment. Working mothers are less preoccupied and less at risk of being focussed on the handicapped child only. In comparison, the parents of children with Orofacial clefts focus less on the handicapped child in general than those parents whose children suffer from additional behavioural disorders.
Discussion
Though several functional, behavioural and psychological disorders may occur in children with cleft lip and palate their parents feel comparatively little stress. They do use a variety of coping strategies and tend to adopt a rather positive approach. Certainly, additional disorders of the child lead to more parental stress and likewise requiring more attention to the child which may even accentuate existing behavioural disorders.
Conclusion
Parents of children with cIeft Iip and palate experience less stress in comparison with parents of children with other handicaps. Therapeutic efforts and regular check of the child's progress might support parents' coping strategies. Therapists should also ask for additional disorders such as behavioural disorders and initiate adequate support.
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Schuster, M., Kummer, P., Eysholdt, U. et al. Soziale Orientierung der Eltern von Kindern mit Lippen-Kiefer-Gaumen-Spalten. HNO 51, 507–512 (2003). https://doi.org/10.1007/s00106-003-0843-9
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DOI: https://doi.org/10.1007/s00106-003-0843-9
Schlüsselwörter
- Lippen-Kiefer-Gaumen-Spalte
- Behinderung des Kindes
- Bewältigungsverhalten der Eltern
- Soziale Orientierung
- SOEBEK