Department of Social Medicine and Health Management, Xiangya School of Public Health, Central South University, Changsha, Hunan, China.
School of Health Sciences, College of Medicine, Nursing and Health Sciences, University of Galway, Galway, Ireland.
Glob Health Res Policy. 2024 Jul 15;9(1):27. doi: 10.1186/s41256-024-00370-1.
Birth defects are the leading cause of mortality in newborn babies and children under five years old. In response, the Chinese government has implemented a three-tiered prevention strategy, which has brought ethical concerns about fetuses with birth defects. This study aims to explore the attitudes toward fetuses with birth defects among health professionals engaged in maternal and child health services.
A qualitative study was conducted among 13 health professionals engaged in maternal and child health services in Hunan Province, China. The questions were designed to elicit the participants' work experience and attitudes toward fetuses with birth defects. The data were collected through in-depth semi-structured interviews, and NVivo 12 was used for data coding and analysis. A thematic analysis approach was employed following the SRQR checklist.
Five themes and 13 attributes were generated regarding health professionals' perspectives on fetuses with birth defects. The five themes included: (1) severity and curability of diseases (two attributes), (2) family relations (four attributes), (3) medical assessments (two attributes), (4) social situations (three attributes), (5) self-value orientations (three attributes). The findings showed that the majority of health professionals held the view that a fetus with a curable disease could be born, whereas a fetus with severe disability and teratogenesis should be terminated. Twelve out of the 13 health professionals believed that parents should be the decision-makers, while only one thought that the family should make a decision together.
Attitudes toward birth defects were influenced by various factors, indicating the complexity of real-world cases identified in this study. The findings highlight the dilemmas faced by both families and health professionals regarding birth defects. Adequate medical knowledge and support from society are crucial to inform decision-making among family members. Additionally, standardized norms and policies for birth defects are needed. Establishing an ethics committee for prenatal diagnosis is necessary to address current ethical issues in this field.
出生缺陷是导致新生儿和五岁以下儿童死亡的主要原因。针对这一问题，中国政府实施了三级预防策略，这引发了人们对有出生缺陷胎儿的伦理关注。本研究旨在探讨从事母婴保健服务的卫生专业人员对有出生缺陷胎儿的态度。
在中国湖南省，对 13 名从事母婴保健服务的卫生专业人员进行了定性研究。问题旨在引出参与者的工作经验和对有出生缺陷胎儿的态度。通过深入的半结构化访谈收集数据，并使用 NVivo 12 对数据进行编码和分析。采用遵循 SRQR 清单的主题分析方法。
针对卫生专业人员对有出生缺陷胎儿的看法，生成了五个主题和 13 个属性。五个主题包括：（1）疾病的严重程度和可治愈性（两个属性），（2）家庭关系（四个属性），（3）医学评估（两个属性），（4）社会状况（三个属性），（5）自我价值取向（三个属性）。研究结果表明，大多数卫生专业人员认为可治愈疾病的胎儿可以出生，而严重残疾和致畸的胎儿应被终止。13 名卫生专业人员中有 12 名认为父母应该是决策者，而只有 1 名认为家庭应该共同做出决定。
对出生缺陷的态度受到多种因素的影响，表明本研究中确定的现实案例的复杂性。研究结果突出了家庭和卫生专业人员在出生缺陷方面面临的困境。充分的医学知识和社会支持对于家庭成员的决策至关重要。此外，还需要制定出生缺陷的标准规范和政策。建立产前诊断伦理委员会是解决该领域当前伦理问题的必要条件。
