Alotaibi Maha
King Saud Medical City, Riyadh, Saudi Arabia.
Front Genet. 2024 Sep 5;15:1434322. doi: 10.3389/fgene.2024.1434322. eCollection 2024.
Genetics' integration with society sparks a multifaceted exploration in medicine, ethics, and psychology. This survey probes parental perspectives on childhood genetic disorders, aiming to gauge their understanding, attitudes, and implications. It seeks to inform healthcare, counseling, and policy endeavors by uncovering gaps in knowledge and attitudes. Understanding the psychological impact and familial dynamics of genetic information underscores the need for tailored support services amidst rapid advancements in genetic technologies and their ethical complexities. It is a cross-sectional survey that assesses parental genetic knowledge and attitudes towards childhood genetic disorders. Data is collected by both paper and electronic formats. Data is cleaned in Excel and analyzed in IBM SPSS 29. Our study included 138 participants, predominantly female (71.7%), with mean age 36.01 years (SD = 8.7). Most were Saudi (81.2%), with university education (65.9%). Notably, 73.2% reported consanguineous marriages. Regarding knowledge, 73.2% demonstrated good understanding of genetic disorders of child. Moreover, 47.8% and 34.1% claimed 40%-60% and 34.1% knowledge levels, respectively. Doctors were the primary information source (79.7%). Participants expressed moderate impact of genetic disorders on their child's life (65.9%) and family dynamics (45.7%). Satisfaction with medical care was high (41.3% rated it as excellent). Challenges accessing healthcare were reported by 52.9%. Positive experiences with genetic disorders were reported by 62.3%, with male participants more likely to report positive experiences (B = 0.888, = 0.041). Improvement areas included treatment availability (39.1%) and advanced medical tests (20.3%). Notably, informing relatives about the genetic disease significantly predicted positive attitudes (B = 1.006, = 0.008). Overall, obtaining information from doctors significantly enhanced knowledge (B = 2.296, = 0.024). Our study shows significant associations between parental knowledge, attitudes towards genetic disorders, and healthcare experiences. It underscores the importance of informed decision-making and targeted interventions to address challenges and improve outcomes in managing childhood genetic disorders.
遗传学与社会的融合引发了医学、伦理学和心理学等多方面的探索。本次调查探究了父母对儿童遗传疾病的看法，旨在衡量他们的理解、态度及影响。通过揭示知识和态度方面的差距，为医疗保健、咨询和政策制定工作提供信息。在基因技术迅速发展及其伦理复杂性的背景下，了解遗传信息的心理影响和家庭动态凸显了提供量身定制的支持服务的必要性。这是一项横断面调查，评估父母对儿童遗传疾病的遗传知识和态度。数据通过纸质和电子格式收集。数据在Excel中进行清理，并在IBM SPSS 29中进行分析。我们的研究包括138名参与者，主要为女性（71.7%），平均年龄36.01岁（标准差 = 8.7）。大多数是沙特人（81.2%），拥有大学学历（65.9%）。值得注意的是，73.2%的人报告有近亲婚姻。在知识方面，73.2%的人对儿童遗传疾病有较好的理解。此外，分别有47.8%和34.1%的人声称知识水平为40% - 60%和34.1%。医生是主要的信息来源（79.7%）。参与者表示遗传疾病对孩子生活（65.9%）和家庭动态（45.7%）有中等影响。对医疗护理的满意度较高（41.3%将其评为优秀）。52.9%的人报告了获得医疗保健方面的挑战。62.3%的人报告了与遗传疾病相关的积极经历，男性参与者更有可能报告积极经历（B = 0.888，P = 0.041）。改进领域包括治疗可及性（39.1%）和先进医学检测（20.3%）。值得注意的是，告知亲属遗传疾病显著预测了积极态度（B = 1.006，P = 0.008）。总体而言，从医生那里获取信息显著提高了知识水平（B = 2.296，P = 0.024）。我们的研究表明父母的知识、对遗传疾病的态度与医疗保健经历之间存在显著关联。它强调了知情决策和针对性干预的重要性，以应对挑战并改善儿童遗传疾病管理的结果。
