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关于婴儿先天性异常的医疗信息:成功沟通以支持父母的调适与过渡。

Medical information concerning an infant's congenital anomaly: Successful communication to support parental adjustment and transition.

作者信息

Fonseca Ana, Nazaré Bárbara, Canavarro Maria Cristina

机构信息

Faculty of Psychology and Educational Sciences, University of Coimbra, Portugal.

Faculty of Psychology and Educational Sciences, University of Coimbra, Portugal.

出版信息

Disabil Health J. 2016 Jan;9(1):150-6. doi: 10.1016/j.dhjo.2015.08.005. Epub 2015 Sep 4.

Abstract

BACKGROUND

When a diagnosis of congenital anomaly (CA) is made, parents are confronted with new and complex medical information, which may impact their parental adjustment. However, few studies have explored the role of information concerning the CA in parental adjustment, during the transition to parenthood.

OBJECTIVE/HYPOTHESIS: This study aimed to characterize both parents' perceptions of information concerning the CA and to investigate their role in maternal and paternal adjustment, one month after the disclosure and six months post-birth.

METHODS

Thirty six couples whose infants were prenatally- or postnatally diagnosed with a CA participated in this prospective longitudinal study. During both assessment times (Time 1: one-month after the disclosure; Time 2: six-month post-birth), they answered the Brief Symptom Inventory-18, the EUROHIS-QOL-8, and other specific questions to assess parents' information perceptions.

RESULTS

Mothers were more satisfied than fathers (p < .01) with the amount of information that was received at the disclosure, although mothers and fathers reported similar levels of comprehension of information. Six-month post-birth, both parents were similarly satisfied with the information that was received, although mothers sought significantly more (p < .01) additional information. Both maternal and paternal adjustment were significantly associated with maternal perceptions of information concerning CA.

CONCLUSION

Health professionals should recognize the important role of information concerning CA in parental adjustment and tailor their communication practices in order to promote parents' satisfaction and comprehension of the medical information. Despite the prominent influence of maternal perceptions on parental adjustment, both parents should be included in the communication process.

摘要

背景

当做出先天性异常(CA)的诊断时,父母会面对新的复杂医学信息,这可能会影响他们为人父母的适应情况。然而,很少有研究探讨在为人父母的转变过程中,关于CA的信息在父母适应方面所起的作用。

目的/假设:本研究旨在描述父母双方对有关CA信息的认知,并调查这些信息在披露后一个月和出生后六个月对母亲和父亲适应情况所起的作用。

方法

36对夫妻参与了这项前瞻性纵向研究,他们的婴儿在产前或产后被诊断患有CA。在两个评估时间点(时间1:披露后一个月;时间2:出生后六个月),他们回答了简明症状量表-18、欧洲生活质量调查问卷-8以及其他特定问题,以评估父母对信息的认知。

结果

在披露时,母亲对所获得的信息量比父亲更满意(p < 0.01),尽管母亲和父亲报告的信息理解水平相似。出生后六个月,父母双方对所获得的信息同样满意,尽管母亲寻求的额外信息显著更多(p < 0.01)。母亲和父亲的适应情况均与母亲对有关CA信息的认知显著相关。

结论

卫生专业人员应认识到有关CA的信息在父母适应方面的重要作用,并调整他们的沟通方式,以提高父母对医学信息的满意度和理解。尽管母亲的认知对父母适应有显著影响,但沟通过程中应纳入父母双方。

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