Department of Pediatrics, King Abdulaziz Hospital, Al-Ahsa, Saudi Arabia.
BMC Med Ethics. 2011 Aug 23;12:15. doi: 10.1186/1472-6939-12-15.
Breaking bad news (BBN) to parents whose newborn has a major disease is an ethical dilemma. In Saudi Arabia, BBN about newborns is performed according to the parental preferences that have been reported from non-Arabic/non-Islamic countries. Saudi mothers' preferences about BBN have not yet been studied. Therefore, we aimed to elicit the preferences of Saudi mothers about BBN concerning newborns.
We selected a convenience sample of 402 Saudi mothers, aged 18-50 years, who had no previous experience with BBN. We selected them via a simple number-randomization scheme from the premises of a level III Saudi hospital between October of 2009 and January of 2011. We used a hypothetical situation (BBN about trisomy 21) to elicit their preferences about BBN concerning newborns via a structured verbal questionnaire composed of 12 multiple-choice questions. We expressed their preferences as percentages (95% confidence interval), and we used the Kendall's W test (W) to assess the degree of agreement in preferences.
The Saudi mothers preferred that BBN be conducted with both parents together (64% [60-69]), albeit with weak levels of agreement (W = 0.29). They showed moderate agreement in their preferences that BBN should be conducted early (79% [75-83], W = 0.48), in detail (81% [77-85], W = 0.52), in person (88% [85-91], W = 0.58), and in a quiet setting (86% [83-90], W = 0.53). With extremely weak agreement, they preferred to have a known person present for support during BBN (56% [51-61], W = 0.01), to have close bodily contact with their babies (66% [61-70], W = 0.10), and to have no another patients present (64% [59-68], W = 0.08). They showed moderate levels of agreement in their desires to detail, in advance, their preferences about process of BBN by giving a reversible, written informed consent that could be utilized for guidance, if needed (80% [76-84], W = 0.36).
In our experience, Saudi mothers' preferences about BBN concerning newborns are varied, suggesting that a "one-size-fits-all" approach is inappropriate. A reversible, written informed consent detailing their preferences about BBN that would be kept in their medical records and utilized for guidance, if needed, may be the best solution, given this level of diversity. These findings merit further study.
向患有重大疾病的新生儿的父母告知坏消息（BBN）是一个伦理困境。在沙特阿拉伯，根据已报道的非阿拉伯/非伊斯兰国家的父母意愿来进行新生儿 BBN。沙特母亲对 BBN 的意愿尚未得到研究。因此，我们旨在了解沙特母亲对新生儿 BBN 的意愿。
我们选择了 402 名年龄在 18-50 岁之间、无 BBN 经验的沙特母亲，采用简单的数字随机方案，于 2009 年 10 月至 2011 年 1 月在沙特三级医院的场所中抽取。我们使用一个假设的情况（21 三体 BBN），通过一个由 12 个多项选择题组成的结构化口头问卷来引出她们对新生儿 BBN 的意愿。我们将她们的意愿表示为百分比（95%置信区间），并使用 Kendall 的 W 检验（W）评估意愿的一致性程度。
沙特母亲希望 BBN 由父母双方共同进行（64%[60-69]），尽管一致性程度较低（W=0.29）。她们对 BBN 应尽早（79%[75-83]，W=0.48）、详细（81%[77-85]，W=0.52）、亲自（88%[85-91]，W=0.58）和在安静的环境中进行（86%[83-90]，W=0.53）表示出中等程度的同意。在非常低的一致性水平上，她们希望在 BBN 期间有一个熟人提供支持（56%[51-61]，W=0.01），与她们的婴儿保持密切的身体接触（66%[61-70]，W=0.10），并且没有其他病人在场（64%[59-68]，W=0.08）。她们对预先详细说明 BBN 过程的意愿表示出中等程度的同意，通过给予可用于指导的可逆书面知情同意书来表达，如有需要（80%[76-84]，W=0.36）。
根据我们的经验，沙特母亲对新生儿 BBN 的意愿是多种多样的，这表明“一刀切”的方法是不适当的。鉴于这种多样性，一份详细说明她们对 BBN 意愿的可逆书面知情同意书，并将其保存在她们的医疗记录中，如有需要，可用于指导，可能是最好的解决方案。这些发现值得进一步研究。
