Dölger-Häfner M, Bartsch A, Trimbach G, Zobel I, Witt E
Poliklinik für Kieferorthopädic, Bayerische Julius-Maximilians-Universität Würzburg.
J Orofac Orthop. 1997;58(2):124-33.
Parental experiences and behaviour following the birth of a cleft child were studied by comparing the results of 2 interview studies conducted at a 7-year interval. The parents of a total of 55 cleft children, most of whom had passed the primary treatment, were interviewed about their psychosocial adaptation, using an interview scheme with the focus on: a) emotional, cognitive and social reactions following birth, b) information-giving and support provided by the medical staff, c) interaction with the cleft child, and d) impact on family life. In both studies, more than 70% of the parents were very shocked at the birth of the cleft child. In the later study, parents more often expressed depression, social avoidance and feelings of guilt. They indicated better psychosocial care and more understanding provided by the medical staff compared to the earlier study. Twice as many parents were satisfied with the information provided by the cleft centre, however, the amount of information had little impact on coping with the shock. In conclusion, further sensitisation of the medical staff with respect to parental coping processes and needs for information and emotional support was called for, along with the inclusion of these topics in the respective curricula.
通过比较间隔7年进行的两项访谈研究结果，对唇腭裂患儿出生后父母的经历和行为进行了研究。总共对55名唇腭裂患儿的父母进行了访谈，其中大多数患儿已完成初步治疗，采用的访谈方案重点关注：a）出生后的情绪、认知和社会反应，b）医护人员提供的信息和支持，c）与唇腭裂患儿的互动，以及d）对家庭生活的影响。在两项研究中，超过70%的父母在唇腭裂患儿出生时非常震惊。在后来的研究中，父母更常表现出抑郁、社交回避和内疚感。与早期研究相比，他们表示医护人员提供了更好的心理社会护理和更多理解。对唇腭裂中心提供的信息感到满意的父母数量是原来的两倍，然而，信息量对应对震惊几乎没有影响。总之，需要医护人员进一步提高对父母应对过程以及信息和情感支持需求的敏感度，并将这些主题纳入各自的课程中。
