PDF(Pubmed)
Abstract：
OBJECTIVE: The aim of this study was to explore the parents\' experiences of home monitoring of the fetal heart rhythm. Women with anti-SSA/Ro52 autoantibodies carry a 2%-3% risk of giving birth to a child with congenital heart block (CHB), following transplacental transfer and antibody-mediated inflammation in the fetal conduction system during 18th to 24th gestational week. Early detection and subsequent treatment have been reported to decrease morbidity and mortality. Therefore, home monitoring of the fetal heart rhythm by Doppler has been offered at our fetal cardiology center. This study was undertaken to explore the lived experience of the routine.
METHODS: Participants were recruited from a single fetal cardiology center. Consecutive sampling was used. The inclusion criteria were women with SSA/Ro52 antibodies who had undergone Doppler examinations within the last two and a half years at the hospital and had monitored the fetal heartbeat at home. A semi-structured questionnaire was created, and the participants were interviewed individually. The interviews were transcribed verbatim and analyzed according to qualitative content analysis.
RESULTS: The overall theme was defined as \"walking on thin ice,\" with six underlying categories: reality, different strategies, gain and loss, healthcare providers, underlying tension, and conducting the examinations again, all with a focus on how to handle the home monitoring during the risk period.
CONCLUSIONS: Both the mother and the co-parent expressed confidence in their own abilities and that the monitoring provided them with the advantage of growing a bond with the expected child. However, all the participants described a feeling of underlying tension during the risk period. The results show that home monitoring is not experienced as complicated or a burden for the parents-to-be and should be considered a vital part of the chain of care for mothers at risk for giving birth to a child with CHB. However, explaining the teamwork between the different caregivers, for the patients involved, their areas of expertise, and how they collaborate with the patient continues to be a pedagogic challenge and should be developed further.
METHODS: Participants were recruited from a single fetal cardiology center. Consecutive sampling was used. The inclusion criteria were women with SSA/Ro52 antibodies who had undergone Doppler examinations within the last two and a half years at the hospital and had monitored the fetal heartbeat at home. A semi-structured questionnaire was created, and the participants were interviewed individually. The interviews were transcribed verbatim and analyzed according to qualitative content analysis.
RESULTS: The overall theme was defined as \"walking on thin ice,\" with six underlying categories: reality, different strategies, gain and loss, healthcare providers, underlying tension, and conducting the examinations again, all with a focus on how to handle the home monitoring during the risk period.
CONCLUSIONS: Both the mother and the co-parent expressed confidence in their own abilities and that the monitoring provided them with the advantage of growing a bond with the expected child. However, all the participants described a feeling of underlying tension during the risk period. The results show that home monitoring is not experienced as complicated or a burden for the parents-to-be and should be considered a vital part of the chain of care for mothers at risk for giving birth to a child with CHB. However, explaining the teamwork between the different caregivers, for the patients involved, their areas of expertise, and how they collaborate with the patient continues to be a pedagogic challenge and should be developed further.
摘要：
目的：本研究的目的是探讨父母家庭监测胎儿心律的经验。具有抗SSA/Ro52自身抗体的女性有2％-3％的风险生下患有先天性心脏传导阻滞（CHB）的孩子，在18至24孕周期间，经胎盘转移和抗体介导的胎儿传导系统炎症。据报道，早期发现和后续治疗可降低发病率和死亡率。因此,我们的胎儿心脏病中心提供了多普勒对胎儿心律的家庭监测。进行这项研究是为了探索常规的生活经验。
方法：参与者从一个胎儿心脏病学中心招募。使用连续采样。纳入标准是具有SSA/Ro52抗体的女性，她们在过去两年半内在医院接受了多普勒检查，并在家中监测了胎儿心跳。创建了一份半结构化问卷，参与者分别接受了采访。对访谈进行逐字抄录，并根据定性内容分析进行分析。
结果：总的主题被定义为“如履薄冰，\“有六个基本类别：现实，不同的策略,得失,医疗保健提供者，潜在的张力，再次进行考试，所有这些都集中在风险期间如何处理家庭监控。
结论：母亲和共同父母都表达了对自己能力的信心，并且监测为他们提供了与预期孩子建立联系的优势。然而,所有参与者都描述了在风险期间潜在的紧张感。结果表明，家庭监测并不像父母那样复杂或负担，应该被认为是有风险生下CHB孩子的母亲护理链的重要组成部分。然而,解释不同护理人员之间的团队合作，对于涉及的患者来说，他们的专业领域，以及他们如何与患者合作仍然是一个教学挑战，应该进一步发展。
方法：参与者从一个胎儿心脏病学中心招募。使用连续采样。纳入标准是具有SSA/Ro52抗体的女性，她们在过去两年半内在医院接受了多普勒检查，并在家中监测了胎儿心跳。创建了一份半结构化问卷，参与者分别接受了采访。对访谈进行逐字抄录，并根据定性内容分析进行分析。
结果：总的主题被定义为“如履薄冰，\“有六个基本类别：现实，不同的策略,得失,医疗保健提供者，潜在的张力，再次进行考试，所有这些都集中在风险期间如何处理家庭监控。
结论：母亲和共同父母都表达了对自己能力的信心，并且监测为他们提供了与预期孩子建立联系的优势。然而,所有参与者都描述了在风险期间潜在的紧张感。结果表明，家庭监测并不像父母那样复杂或负担，应该被认为是有风险生下CHB孩子的母亲护理链的重要组成部分。然而,解释不同护理人员之间的团队合作，对于涉及的患者来说，他们的专业领域，以及他们如何与患者合作仍然是一个教学挑战，应该进一步发展。
