Schuster M, Kummer P, Eysholdt U, Rosanowski F
Abteilung für Phoniatrie und Pädaudiologie, Klinikum der Universität Erlangen-Nuremberg, Bohlenplatz 21, 91054, Erlangen.
HNO. 2003 Jun;51(6):507-12. doi: 10.1007/s00106-003-0843-9. Epub 2003 May 13.
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.
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 fulfillment. 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.
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.
Parents of children with cleft lip 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.
唇腭裂是口面部区域最常见的畸形。腭裂的类型和范围决定了呼吸、吞咽、言语、发音及听力等功能受限情况。此外,外观和交流方面的限制会影响患儿的认知、社交及教育发展以及他们的幸福安康。患儿父母面临一项艰巨且持久的任务:他们必须应对孩子的残疾以及从婴儿早期就开始的标准化治疗程序。为确保最佳治疗效果,必须让父母作为共同治疗师参与进来。因此,需要更多关于父母担忧及应对策略的信息。
为评估唇腭裂患儿父母所承受的压力以及他们的应对策略,在门诊咨询期间,对说德语的父母使用了一份标准化问卷。结果:与其他残疾患儿的父母相比,唇腭裂患儿的父母压力较小,并采用如加强伴侣关系、利用社会支持以及自尊与自我实现等应对策略。职业母亲的心思没那么重,而且较少只关注残疾孩子。相比之下,唇腭裂患儿的父母总体上不像孩子患有其他行为障碍的父母那样过度关注残疾孩子。
尽管唇腭裂患儿可能出现多种功能、行为及心理障碍,但其父母的压力相对较小。他们确实采用了多种应对策略,且倾向于采取较为积极的态度。当然,孩子的其他障碍会导致父母承受更多压力,同样也需要更多地关注孩子,这甚至可能会加重现有的行为障碍。
与其他残疾患儿的父母相比,唇腭裂患儿的父母压力较小。治疗工作及定期检查孩子的进展情况可能有助于父母的应对策略。治疗师还应询问是否存在如行为障碍等其他问题,并提供适当的支持。