Young J L, O'Riordan M, Goldstein J A, Robin N H
Department of Pediatrics, Case Western Reserve University School of Medicine, University Hospitals of Cleveland, Ohio, USA.
Cleft Palate Craniofac J. 2001 Jan;38(1):55-8. doi: 10.1597/1545-1569_2001_038_0055_widpon_2.0.co_2.
The unexpected birth of a baby with a cleft lip and palate (CL/P) is a shocking and traumatic experience, generating anxiety for parents as well as the attendant health care team. Parents frequently leave the hospital with many unanswered questions because health care professionals do not educate them adequately.
To determine what information these parents felt was "critical" for them during the immediate newborn period and to determine how the "informer" was perceived during these encounters.
Retrospective, self-administered questionnaire.
Biologic parents of children with isolated CL/P aged 6 years and younger were surveyed. The questionnaire asked parents whether they remembered discussing diagnosis, prognosis, management, home care, and psychosocial issues. Parents were also asked to rank how "critical" it would have been for the "informer" to have discussed certain issues with them during this first day.
Parents gave the highest priority to feeding and learning to identify illness in their baby; 95% wanted to be shown all normal aspects of their baby's exam, and 87% wanted to be told that the CL/P was not their fault. Usage of proper terminology to describe abnormal findings and receiving assurance that their child was not in pain were also important. Unfortunately, many parents reported that the informers did not address these issues.
Parents of newborns with CL/P want basic information in the immediate newborn period, especially regarding feeding and recognizing illness. These data suggest that informers are not adequately discussing these issues with parents.
唇腭裂（CL/P）患儿意外出生是一件令人震惊且痛苦的事情，会让父母以及医护团队感到焦虑。由于医护人员没有对父母进行充分的教育，他们常常带着许多未得到解答的问题出院。
确定这些父母在新生儿期认为对他们“至关重要”的信息，并确定在这些接触过程中他们如何看待“告知者”。
回顾性自填问卷。
对6岁及以下孤立性CL/P患儿的亲生父母进行调查。问卷询问父母是否记得讨论过诊断、预后、治疗、家庭护理和心理社会问题。还要求父母对“告知者”在第一天与他们讨论某些问题的“重要性”进行排序。
父母最重视喂养和学会识别婴儿的疾病；95%的父母希望看到婴儿检查的所有正常方面，87%的父母希望被告知唇腭裂不是他们的错。使用恰当术语描述异常发现以及得到孩子没有疼痛的保证也很重要。不幸的是，许多父母报告说告知者没有提及这些问题。
唇腭裂新生儿的父母在新生儿期需要基本信息，尤其是关于喂养和识别疾病的信息。这些数据表明告知者没有与父母充分讨论这些问题。
