唇腭裂患儿对父母及其亲子关系的影响：法国首个前瞻性多中心研究。
The impact of having a baby with cleft lip and palate on parents and on parent-baby relationship: the first French prospective multicentre study.
机构信息
Département d'Orthopédie Dento-Faciale, Pôle de médecine et chirurgie buccodentaires, Cleft Competence Center, Strasbourg University Hospital, Place de l'Hôpital 1, 67000, Strasbourg, France.
Maxillofacial and Plastic Surgery Department (Head: Prof. C. Bruant-Rodier), Cleft Competence Center, Strasbourg University Hospital, 1 place de l'Hôpital Civil, 67091, Strasbourg, France.
出版信息
BMC Pediatr. 2020 May 18;20(1):230. doi: 10.1186/s12887-020-02118-5.
BACKGROUND
The objective of this prospective, multidisciplinary and multicenter study was to explore the effect of a cleft lip, associated or not with a cleft palate, on parents, on parent-infant relationship, and on the baby's relational development. It also highlighted how the type of cleft and the timing of the surgery could impact this effect.
METHOD
158 infants, with Cleft lip with or without Palate, and their parents participated in this multicenter prospective cohort. Clinical evaluations were performed at 4 and 12 months postpartum. The impact on the parents and on the parent-infant relationship was evaluated by the Parenting Stress Index (PSI), the Edinburgh Post-partum Depression Scale (EPDS) and the Impact-on-Family Scale (IOFS). The relational development of the infant was assessed using the Alarm Distress Baby Scale (ADBB). The main criteria used to compare the infants were the severity of cleft and the time of surgery.
RESULTS
The timing of surgery, the type of malformation or the care structure had no effect on social withdrawal behaviors of the child at 4 and 12 months postpartum (ADBB). Furthermore, early intervention significantly decreased maternal stress assessed with the PSI at 4 months. Parents for whom it had been possible to give a prenatal diagnosis were much better prepared to accept the waiting time between birth and the first surgical intervention (IOFS). Higher postpartum depression scores (EPDS) were found for both parents compared to the general population.
CONCLUSION
A joint assessment of the mental health of both infants and parents is required in the follow-up of cleft lip and palate. Even if most families are remarkably resilient faced with this major cause of stress, a significant proportion of them could require help to deal with the situation, especially during this first year of follow-up. An assessment of the child's social withdrawal behaviour and of the parental stress and depression appears useful, in order to adapt care to infant and parent's needs.
TRIAL REGISTRATION
ClinicalTrials.gov Identifier: NCT00993993. Registered 10/14/2009 <.
背景
本前瞻性、多学科、多中心研究旨在探讨唇裂伴或不伴腭裂对父母、父母-婴儿关系以及婴儿关系发展的影响。还强调了唇裂的类型和手术时机如何影响这种影响。
方法
158 名唇裂伴或不伴腭裂的婴儿及其父母参与了这项多中心前瞻性队列研究。产后 4 个月和 12 个月进行临床评估。通过父母压力指数（PSI）、爱丁堡产后抑郁量表（EPDS）和家庭影响量表（IOFS）评估对父母和父母-婴儿关系的影响。使用警报痛苦婴儿量表（ADBB）评估婴儿的关系发展。用于比较婴儿的主要标准是裂隙的严重程度和手术时间。
结果
手术时间、畸形类型或护理结构对婴儿在产后 4 个月和 12 个月时的社会退缩行为（ADBB）没有影响。此外，早期干预可显著降低 4 个月时的母亲 PSI 评分。对于能够进行产前诊断的父母，他们更有准备接受从出生到第一次手术干预之间的等待时间（IOFS）。与一般人群相比，父母在产后的抑郁评分（EPDS）更高。
结论
唇裂和腭裂的随访需要对婴儿和父母的心理健康进行联合评估。尽管大多数家庭在面对这种主要的压力源时表现出了非凡的适应能力，但仍有相当一部分家庭需要帮助来应对这种情况，尤其是在第一年的随访期间。评估儿童的社会退缩行为以及父母的压力和抑郁状况似乎很有用，可以根据婴儿和父母的需求调整护理。
试验注册
ClinicalTrials.gov 标识符：NCT00993993。注册于 2009 年 10 月 14 日。
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