National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Disabil Rehabil. 2022 May;44(10):1821-1829. doi: 10.1080/09638288.2020.1804628. Epub 2020 Aug 17.
The aim of this study was to explore the everyday life experiences and perspectives on challenges related to pregnancy, childbirth and parenthood when living with neuromuscular disorders (NMDs) and identify important elements to take into consideration for parents and their health professionals.
In all, 27 people (17 with a NMD and 10 partners without a NMD) were included in this study. The participants were all parents or expecting parents. Both mothers and fathers and ambulant and non-ambulant participants were included to broaden the perspective. Three types of semi-structured interviews were applied. The analysis was guided by the Interpretive Description methodology and Antonovsky's Sense of Coherence theory.
The findings illuminated insights to ongoing challenges in the everyday lives of parents with NMD. represented guilt and dilemmas on the possibility of passing on the NMD. symbolized the effect that pregnancy and parenthood had on the body. signified the concerns the parents had about "not being normal enough." addressed being dependent on others and how the rarity of the NMD made it difficult to find peers or seek advice.
The study emphasizes the importance of the professionals providing counseling and support on pregnancy, childbirth, and parenthood either during consultations, online or in structured professional and peer-support rehabilitation groups for expecting parents or for new parents with a NMD.IMPLICATIONS FOR REHABILITATIONProfessionals must provide knowledge and counselling on pregnancy, childbirth, and parenthood to support families with NMD who are expecting a child or have already become parents and address the illusion of normal.Professional centralized and specialized units where people with NMD can get advice on pregnancy and give birth should be an option.Structured professional and peer-support rehabilitation groups (physical meetings or online) on pregnancy, childbirth, and parenthood may be of value for the parents due to the rarity of the diagnosis.Online information and knowledge on pregnancy, childbirth, and parenthood and NMD should be widely available.Health professionals and peers can help ensure and support an experience of comprehensibility, manageability, and meaningfulness among the parents with NMD and develop rehabilitation services that meet the needs and preferences of people considering getting a child or who are already parents with NMDs or other disabilities.
本研究旨在探讨患有神经肌肉疾病（NMD）的父母在怀孕、分娩和育儿过程中的日常生活体验和对相关挑战的看法，并确定父母及其健康专业人员需要考虑的重要因素。
本研究共纳入 27 人（17 名患有 NMD，10 名无 NMD 的配偶），均为父母或准父母。纳入了母亲和父亲以及能走动和不能走动的参与者，以拓宽视角。应用了三种类型的半结构化访谈。分析遵循解释性描述方法和 Antonovsky 的健康感理论。
研究结果揭示了 NMD 父母日常生活中持续存在的挑战的见解。 代表了将 NMD 遗传给后代的可能性所带来的内疚和困境。 象征着怀孕和育儿对身体的影响。 表示父母对“不够正常”的担忧。 涉及到依赖他人，以及 NMD 的罕见性使得寻找同龄人或寻求建议变得困难。
该研究强调了专业人员在咨询、在线或在有组织的专业和同伴支持康复小组中提供关于怀孕、分娩和育儿的咨询和支持的重要性，以支持期待孩子或已经成为 NMD 父母的家庭。
专业人员必须提供关于怀孕、分娩和育儿的知识和咨询，以支持期待孩子或已经成为 NMD 父母的家庭，并解决正常的假象。
应该为患有 NMD 的人提供能够获得怀孕建议和分娩的专业集中和专门的单位。
关于怀孕、分娩和育儿的结构化专业和同伴支持康复小组（面对面或在线）可能对父母有价值，因为这种诊断非常罕见。
应该广泛提供关于怀孕、分娩和育儿以及 NMD 的在线信息和知识。
健康专业人员和同龄人可以帮助确保和支持 NMD 父母的可理解性、可管理性和有意义性，并开发满足考虑生育孩子或已经是 NMD 父母或其他残疾父母的人的需求和偏好的康复服务。
