Urinary and fecal incontinence in people dealing with spina bifida, has inevitably an influence on the quality of life. In this analysis, the degree of education on how to manage incontinence and retention is studied, as well as the problems those might create and the consequential degree of autonomy and independence reached into the management of those. The main goal is to increase both nursing assistance and the education of the people dealing with spina bifida. A multiple-choice questionnaire with open questions, concerning the bowel and bladder management was structured by all the authors and shared by the Google Docs platform among the members of the ASBI (Associazione Spina Bifida Italia) by the secretariat of the association itself. 125 patients affected by Spina Bifida voluntarily decided to participate and complete the questionnaire. The questionnaire didn’t set any limits as regards the age. For minors, its completion was made under the observation of the caregivers who gave their consent. All the authors participated to administration of the questionnaire to minors. out of 125 participants, 80 were females and 25 males. The questions concerned the level of deambulation (the 35,2% was autonomous, the 30,4% were people who use wheelchairs while the 34,4% is aid-supported), urinary incontinence, with great concern to the self-catheterization technique (the 80,8% claimed to be autonomous in performing self-catheterization, unlike the remaining 19,2%) and the impact of the said incontinence on social life (the 59,2% claimed they do not feel restrained because of their bladder incontinence or retention, unlike the remaining 40,8%). Lastly, we focused on fecal constipation and incontinence (the 57,6% claimed to struggle with incontinence, the 12% claimed they don’t and the 30,4% struggles with both conditions), on the ability of the people dealing with this to intervene to prevent unpleasant situations, in particular by using trans-anal irrigation (the 57,6% doesn’t feel autonomous in performing it). urinary and fecal incontinence have, of course, an impact on the quality of life of people dealing with spina bifida. Nevertheless, we can observe that it is possible to improve the quality of life of these people, letting them feel confident enough to take part in social activities, through education from an incredibly young age, from 0 up to 25 years old and over, supplied by the medical staff and mostly by the parents (previously educated by the medical staff as well).

中文翻译：

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脊柱裂患者的护理管理：从产前诊断到成年/护理干预，以改善大小便失禁对脊柱裂患者生活质量的影响

脊柱裂患者的大小便失禁不可避免地影响生活质量。在本分析中，研究了如何管理失禁和尿潴留的教育程度，以及这些问题可能产生的问题以及相应管理中的自主性和独立性程度。主要目标是增加对脊柱裂患者的护理援助和教育。所有作者都设计了一份带有开放性问题的多项选择问卷，涉及肠道和膀胱管理，并由协会秘书处通过 Google Docs 平台在 ASBI（意大利脊柱裂协会）成员之间共享。125 名脊柱裂患者自愿决定参与并完成调查问卷。问卷没有对年龄做出任何限制。对于未成年人，其完成是在监护人同意的情况下完成的。所有作者均参与了未成年人问卷的管理。125 名参与者中，80 名女性和 25 名男性。问题涉及复走程度（35.2% 是自主的，30.4% 是使用轮椅的人，34.4% 是需要援助的人）、尿失禁，以及对自我导尿技术的高度关注（80.8% 的人声称可以自主进行自我导尿，与其余 19.2% 不同）以及所述尿失禁对社交生活的影响（59.2% 的人声称他们不会因为膀胱而感到受到限制）失禁或尿潴留，与其余 40.8% 不同）。最后，我们重点关注大便便秘和失禁（57.6% 的人声称患有失禁，12% 的人声称没有，30.4% 的人同时患有这两种疾病）以及人们应对此问题的能力进行干预以防止出现不愉快的情况，特别是使用经肛门冲洗（57.6% 的人在执行此操作时感觉不自主）。当然，大小便失禁会影响脊柱裂患者的生活质量。尽管如此，我们可以观察到，通过从0到25岁及以上的非常年轻的年龄开始接受教育，可以提高这些人的生活质量，让他们有足够的信心参与社会活动。由医务人员和大部分由家长（之前也接受过医务人员的教育）。