Analysis of motivations that lead women to participate (or not) in a newborn cohort study.
Analysis of motivations that lead women to participate (or not) in a newborn cohort study.
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分析导致妇女参与（或不参加新生儿队列研究）的动机。
DOI：
10.1186/1471-2431-13-53
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发表时间：
2013-04-11
期刊：
影响因子：
2.4
通讯作者：
Ronfani L
中科院分区：
文献类型：
--
作者：
Vecchi Brumatti L;Montico M;Russian S;Tognin V;Bin M;Barbone F;Volpi P;Ronfani L
关于影响父母决定参加招募健康儿童的研究的原因，我们知之甚少。这项观察性研究的目的是验证导致孕妇同意或拒绝参加一项随访时间较长的新生儿队列研究的原因。为了前瞻性地调查导致妇女参与、拒绝参与或退出新生儿队列研究的原因，对2007年至2010年在意大利一家医院进行的Phime队列研究中接触或登记的孕妇进行了三种不同的问卷调查。304名女性拒绝参与Phime研究，145名女性在随访期间撤回了知情同意书。所有这些妇女都填写了相关问卷。在18个月随访的632名母亲中，430名填写了关于参与动机的问卷：97%的人表示主要原因是为研究做出贡献; 96%和90%的人表示他们希望有益于未来婴儿和母亲的健康。96%的妇女希望了解对所收集的生物样本进行分析的结果和总体研究结果。三分之一的母亲（37%）希望参与未来类似研究的定义，带来他们的经验和观点。在304名拒绝参与的妇女中，56%的人表示这项研究要求太高，26%的人对参与不感兴趣，18%的人担心需要收集生物样本并进行神经认知测试。在145名入组后退出的女性中，有52%的人表示这项研究要求太高（52%），6%的人担心生物样本的收集。利他主义的原因似乎是主要报告的妇女决定参加新生儿队列研究。这项研究要求太高，需要收集生物样本，这是导致妇女拒绝参加或退出研究的重要原因。就这些方面进行充分的沟通应能最大限度地减少登记困难和后续行动的损失。
Little is known about reasons that influence parents’ decision to participate in studies enrolling healthy children. The aim of this observational study was to verify the reasons that lead pregnant women to give their consent or to refuse participation to a newborn cohort study with a long follow up time. To prospectively investigate the reasons that lead women to participate, to refuse the participation or to withdraw from a newborn cohort study, three different questionnaires were administered to pregnant women contacted or enrolled in the Phime cohort study, carried out in an Italian Hospital from 2007 to 2010. Phime study participation was refused by 304 women and 145 withdrew their consent during the follow up. All these women filled in the related questionnaires. Within 632 mothers in follow up at 18 months, 430 filled in the questionnaire on motivation to participate: 97% stated that the main reason was to contribute to research; 96% and 90% stated that they wanted to benefit future babies’ and mothers’ health. Ninety-six percent of women would appreciate to know the results of analysis carried out on biological samples collected and of the overall study results. One third of the mothers (37%) wanted to be involved in the definition of future similar studies, bringing their experience and their views. Within the 304 women who refused participation, 56% stated that the study was too demanding, 26% was not interested in participating and 18% was concerned about the need to collect biological samples and to be submitted to neurocognitive tests. Fifty-two percent of 145 women who withdrew after enrollment stated that the study was too demanding (52%), and 6% was concerned about the biological samples collection. The altruistic reason appears to be the main reported by women to decide to participate in a newborn cohort study. The fact that the study was too demanding and the need to collect biological samples are important reasons that lead women to refuse participation or to withdraw from the study. An adequate communication on these aspects should minimize difficulties in enrolment and losses to follow up.
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影响因子：
8
作者：
Rothmier, JD;Lasley, MV;Shapiro, GG
通讯作者：
Shapiro, GG
影响因子：
4.2
作者：
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影响因子：
2
作者：
Jenkins, Mary M.;Reed-Gross, Erika;Honein, Margaret A.
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影响因子：
4.7
作者：
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通讯作者：
Barbone F
影响因子：
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作者：
Bosslet, Gabriel T.;Torke, Alexia M.;Helft, Paul R.
通讯作者：
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