Abstract：
OBJECTIVE: To describe families\' experiences of antenatal counselling of spina bifida.
METHODS: Systematic review.
METHODS: MEDLINE, CINAHL, PsycINFO and Embase databases were searched using a combination of Medical Subject Headings and text/abstract terms. Case reports, survey results and qualitative interview data were included. The quality of research was evaluated using the Critical Appraisal Skills Programme checklist.
RESULTS: 8 papers were included. Families described shock and grief at diagnosis, with some immediately offered termination of pregnancy (TOP) even though they knew little about the condition. Positive and negative aspects of care were found. Teams that were gentle, kind and empathetic, who did not use jargon, and highlighted positive and negative aspects of the baby\'s life were seen favourably. Callous language, and overly negative or incorrect counselling was not, particularly if there was pressure to agree to TOP. Families based their decisions on how they would cope, the effect on siblings and the baby\'s likely quality of life. Prenatal surgery was viewed positively. The views of families who chose TOP, were happy with their care, partners, families, and the LGBTQ+ community were under-represented in the literature.
CONCLUSIONS: Unlike other conditions where limited data on outcome exist or the spectrum is genuinely broad, the outcomes of children with spina bifida is well described. Poor aspects of antenatal counselling were described frequently by families, and further work is needed to capture the full spectrum of views on antenatal counselling, how it can be improved, and what training and resources healthcare professionals need to perform it better.
METHODS: Systematic review.
METHODS: MEDLINE, CINAHL, PsycINFO and Embase databases were searched using a combination of Medical Subject Headings and text/abstract terms. Case reports, survey results and qualitative interview data were included. The quality of research was evaluated using the Critical Appraisal Skills Programme checklist.
RESULTS: 8 papers were included. Families described shock and grief at diagnosis, with some immediately offered termination of pregnancy (TOP) even though they knew little about the condition. Positive and negative aspects of care were found. Teams that were gentle, kind and empathetic, who did not use jargon, and highlighted positive and negative aspects of the baby\'s life were seen favourably. Callous language, and overly negative or incorrect counselling was not, particularly if there was pressure to agree to TOP. Families based their decisions on how they would cope, the effect on siblings and the baby\'s likely quality of life. Prenatal surgery was viewed positively. The views of families who chose TOP, were happy with their care, partners, families, and the LGBTQ+ community were under-represented in the literature.
CONCLUSIONS: Unlike other conditions where limited data on outcome exist or the spectrum is genuinely broad, the outcomes of children with spina bifida is well described. Poor aspects of antenatal counselling were described frequently by families, and further work is needed to capture the full spectrum of views on antenatal counselling, how it can be improved, and what training and resources healthcare professionals need to perform it better.
摘要：
目的：描述家庭脊柱裂的产前咨询经验。
方法：系统评价。
方法：MEDLINE，CINAHL,使用医学主题词和文本/抽象术语的组合搜索PsycINFO和Embase数据库。病例报告,包括调查结果和定性访谈数据。使用关键评估技能计划清单评估研究质量。
结果：共纳入8篇论文。家人描述了诊断时的震惊和悲伤，尽管他们对这种情况知之甚少，但有些人立即提出终止妊娠（TOP）。发现了护理的积极和消极方面。温柔的团队，善良和善解人意，没有使用行话的人，并强调了婴儿生活中积极和消极的方面。残酷的语言，过度消极或不正确的咨询不是，特别是如果有压力同意TOP。家庭的决定取决于他们将如何应对，对兄弟姐妹和婴儿可能的生活质量的影响。产前手术效果积极。选择TOP的家庭的观点，对他们的照顾很满意，合作伙伴,家庭,LGBTQ+社区在文献中的代表性不足。
结论：与其他关于结果的数据有限或范围真正广泛的情况不同，脊柱裂儿童的结局得到了很好的描述。家庭经常描述产前咨询的不良方面，需要进一步的工作来收集关于产前咨询的所有意见，如何改进它，以及医疗保健专业人员需要哪些培训和资源来更好地执行它。
方法：系统评价。
方法：MEDLINE，CINAHL,使用医学主题词和文本/抽象术语的组合搜索PsycINFO和Embase数据库。病例报告,包括调查结果和定性访谈数据。使用关键评估技能计划清单评估研究质量。
结果：共纳入8篇论文。家人描述了诊断时的震惊和悲伤，尽管他们对这种情况知之甚少，但有些人立即提出终止妊娠（TOP）。发现了护理的积极和消极方面。温柔的团队，善良和善解人意，没有使用行话的人，并强调了婴儿生活中积极和消极的方面。残酷的语言，过度消极或不正确的咨询不是，特别是如果有压力同意TOP。家庭的决定取决于他们将如何应对，对兄弟姐妹和婴儿可能的生活质量的影响。产前手术效果积极。选择TOP的家庭的观点，对他们的照顾很满意，合作伙伴,家庭,LGBTQ+社区在文献中的代表性不足。
结论：与其他关于结果的数据有限或范围真正广泛的情况不同，脊柱裂儿童的结局得到了很好的描述。家庭经常描述产前咨询的不良方面，需要进一步的工作来收集关于产前咨询的所有意见，如何改进它，以及医疗保健专业人员需要哪些培训和资源来更好地执行它。
