Department of Gynaecology, Royal Children's Hospital, Melbourne, Australia; Reproductive Development Laboratory, Murdoch Children's Research Institute Melbourne, Australia; Department of Paediatrics, University of Melbourne, Australia.
Department of Midwifery, School of Nursing and Midwifery, College of Medicine, Health and Wellbeing, University of Newcastle, Australia.
Women Birth. 2023 Feb;36(1):e142-e149. doi: 10.1016/j.wombi.2022.05.007. Epub 2022 Jun 11.
The birth of a baby with ambiguous genitalia is rare and usually unexpected. Parents often receive inconsistent language from health-professionals after the birth. Initial interaction with the birth team has long-term consequences for families with babies born with ambiguous genitalia.
Understand the current practices on the day of birth and explore knowledge gaps for midwives regarding babies born with ambiguous genitalia. Develop educational content that can enable midwives to respond appropriately when the sex of a baby is unclear.
This study included two phases, utilising qualitative descriptive research design with semi-structured interviews to understand the experiences of midwives caring for babies with ambiguous genitalia and their families. The findings informed the development a midwifery educational resource using these qualitative findings.
Our analysis of 14 interviews with Australian midwives identified that they had no formal education to support families with a baby with ambiguous genitalia. Emotional support, advocacy and medical information translation were areas midwives perceived as essential skills to support these families.
Midwives provide a unique role in parental birth experiences. Themes that arose emphasised their psychosocial support role but lacked formal education and guidance on this topic. Midwives had learnt from the media about babies born with ambiguous genitalia and wanted evidence-based education to support parents. Midwife education focusing on both psychosocial and clinical care for parents and their baby with ambiguous genitalia is crucial.
Midwives can play a pivotal role in supporting parents with a baby with ambiguous genitalia. Themes from this qualitative study informed the development of a midwifery education digital resource.
婴儿外生殖器畸形的情况较为罕见，通常令人措手不及。婴儿出生后，父母往往会从医护人员那里得到前后不一的信息。出生团队与家庭的初次接触会对有外生殖器畸形婴儿的家庭产生长期影响。
了解出生当天的现行做法，并探讨助产士在处理外生殖器畸形婴儿方面的知识空白。开发教育内容，使助产士能够在婴儿性别不明时做出恰当回应。
本研究包括两个阶段，采用定性描述性研究设计，通过半结构化访谈了解助产士照顾外生殖器畸形婴儿及其家庭的经验。研究结果为使用这些定性发现开发助产士教育资源提供了依据。
我们对 14 名澳大利亚助产士的访谈分析表明，他们没有接受过支持外生殖器畸形婴儿家庭的正规教育。情感支持、倡导和医学信息翻译是助产士认为支持这些家庭的必要技能。
助产士在父母的分娩经历中扮演着独特的角色。出现的主题强调了他们的心理社会支持角色，但在这个话题上缺乏正规教育和指导。助产士从媒体了解到外生殖器畸形婴儿的情况，并希望获得支持父母的循证教育。关注父母及其外生殖器畸形婴儿的心理社会和临床护理的助产士教育至关重要。
助产士可以在外生殖器畸形婴儿的父母支持中发挥关键作用。本研究的定性主题为开发助产士教育数字资源提供了信息。
