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促进苯丙酮尿症女性的心理健康:与妊娠相关的压力、应对策略及支持

Promoting psychological well-being in women with phenylketonuria: Pregnancy-related stresses, coping strategies and supports.

作者信息

Roberts Rachel M, Muller Tamara, Sweeney Annabel, Bratkovic Drago, Gannoni Anne

机构信息

School of Psychology, University of Adelaide, Adelaide, Australia.

Department of Nutrition, Women's and Children's Hospital, Adelaide, Australia.

出版信息

Mol Genet Metab Rep. 2014 Apr 17;1:148-157. doi: 10.1016/j.ymgmr.2014.03.002. eCollection 2014.

DOI:10.1016/j.ymgmr.2014.03.002
PMID:27896085
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5121318/
Abstract

OBJECTIVE

To explore the pregnancy-related stresses anticipated and experienced by women with phenylketonuria (PKU) and the coping strategies and supports utilised or anticipated to be beneficial during pregnancy.

METHODS

Thematic analysis of interview data from eight women with PKU in a cross-sectional, qualitative study. Five of the participants had never had a pregnancy but were planning to in the future, two participants had children, and one participant was pregnant.

RESULTS

The central concern regarding pregnancy was achieving and maintaining the essential low Phe levels, in the context of the devastating effects of high levels. The Transactional Model of Stress and Coping was utilised to understand the coping strategies and supports utilised or anticipated to be beneficial during pregnancy. Similarities and differences between the women who had experienced pregnancy, and those who were planning a pregnancy in the future were evident in key coping strategies, with knowledge seeking, positive reappraisal, and reassurance seeking reported. Support from health professionals and other mothers with PKU was key for all women. Psychological support was identified as a resource perceived to be beneficial to promote psychological well-being during pregnancy but not yet provided.

CONCLUSION

Pregnancy is associated with significant stresses for women with PKU. Clinical implications of the findings include provision of psychological support.

摘要

目的

探讨苯丙酮尿症(PKU)女性预期及经历的与妊娠相关的压力,以及她们在孕期采用或预期有益的应对策略和获得的支持。

方法

在一项横断面定性研究中,对8名PKU女性的访谈数据进行主题分析。其中5名参与者从未怀孕但计划未来怀孕,2名参与者育有子女,1名参与者正在怀孕。

结果

鉴于高苯丙氨酸(Phe)水平的破坏性影响,孕期的核心关注点是达到并维持必要的低Phe水平。采用压力与应对的交互作用模型来理解在孕期采用或预期有益的应对策略和获得的支持。在关键应对策略方面,有过妊娠经历的女性和未来计划怀孕的女性之间存在异同,她们报告了寻求知识、积极重新评价和寻求安慰等策略。来自医疗专业人员和其他PKU母亲的支持对所有女性都至关重要。心理支持被认为是一种有助于促进孕期心理健康的资源,但尚未提供。

结论

妊娠对PKU女性来说伴随着重大压力。研究结果的临床意义包括提供心理支持。

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