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遗传咨询——咨询后阶段:二、做出生育选择。

Genetic counseling -- the postcounseling period: II. Making reproductive choices.

作者信息

Lippman-Hand A, Fraser F C

出版信息

Am J Med Genet. 1979;4(1):73-87. doi: 10.1002/ajmg.1320040109.

DOI:10.1002/ajmg.1320040109
PMID:495655
Abstract

Qualitative analysis of transcripts of follow-up interviews with 53 parents who had had genetic counseling was undertaken to characterize the process by which childbearing decisions were made and to determine how counselees resolved the problems created by being at risk. Although specific issues to be resolved varied with a parent's perception of his or her situation, all those who considered having subsequent children attempted to limit the uncertainties they faced and to neutralize those consequences perceived as most problematic. To do so, counselees uniformly inferred from factual information and experiences available to them how they could manage the possible consequences of taking a chance. Factors influencing a parent's ability to make a clear decision included the presence of a previous normal child, the diffusion of decision-making responsibility to others, and recognition that one had already managed the worst. When these "facts" could not be processed to provide a sense of coping, parents either decided against reproduction and took appropriate action or made a "non-decision" about reproduction by choosing to leave conception to chance. These various tactics allowed parents to create a "least-lose" option in terms of their child-bearing choices. This analysis of how parents make reproductive decisions, along with previous findings, suggests that being at risk both creates common problems and elicits common responses from counselees. Moreover, it highlights the importance of recognizing parents' perceptions of their situation to understand how their deliberations are structured and how factual information influences their ultimate choices.

摘要

对53位接受过遗传咨询的父母的随访访谈记录进行了定性分析,以描述生育决策的过程,并确定咨询对象如何解决因处于风险中而产生的问题。尽管需要解决的具体问题因父母对自身情况的认知而异,但所有考虑生育后续子女的父母都试图减少他们面临的不确定性,并消除那些被认为最成问题的后果。为此,咨询对象一致从他们可获得的事实信息和经历中推断出如何应对冒险可能带来的后果。影响父母做出明确决定的能力的因素包括此前有一个正常孩子、将决策责任分散给他人,以及认识到自己已经应对过最糟糕的情况。当这些“事实”无法被梳理以产生应对感时,父母要么决定不生育并采取适当行动,要么通过选择听天由命对生育问题“不做决定”。这些不同的策略使父母在生育选择方面创造出一个“损失最小”的选项。对父母如何做出生育决策的这一分析,连同之前的研究结果表明,处于风险中既会产生共同的问题,也会引发咨询对象的共同反应。此外,它凸显了认识到父母对自身情况的认知对于理解他们的思考方式如何构建以及事实信息如何影响他们的最终选择的重要性。

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