关键词: ADHD ASD Developmental disorder FASD Parents SLI Screening

来  源:   DOI:10.1016/j.heliyon.2024.e30076   PDF(Pubmed)

Abstract:
UNASSIGNED: Screening children for developmental disorders presents unique ethical and methodological challenges, particularly with disorders associated with high levels of shame and stigma. Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental condition resulting from prenatal alcohol exposure. The potential distress caused by informing parents that their child may have FASD has been cited as a significant barrier to conducting such studies. However, limited research has investigated the impact of screening for FASD on parents and children.
UNASSIGNED: This exploratory study aimed to examine the experiences of a small sample of parents participating in an active case ascertainment prevalence study screening for FASD in Greater Manchester, UK (ADD-GM study).
UNASSIGNED: Interviews were conducted with six parents, whose children aged 8-10 years, underwent screening (including three cases of FASD). Thematic analysis was performed on the collected data to identify key themes and patterns.
UNASSIGNED: The analysis revealed that parents perceived participation in the study as worthwhile, and their children either enjoyed or were indifferent to the process of data collection. Parents of children identified with FASD reported that although the results were surprising, they did not find the experience overly distressing.
UNASSIGNED: The findings suggest that parents generally view participation positively and perceive limited negative impact. These insights contribute to a better understanding of the challenges and benefits associated with screening children for FASD.
摘要:
筛查儿童发育障碍带来了独特的伦理和方法挑战,特别是与高水平的羞耻和耻辱相关的疾病。胎儿酒精谱系障碍(FASD)是由产前酒精暴露引起的神经发育状况。由于告知父母其孩子可能患有FASD而引起的潜在困扰被认为是进行此类研究的重要障碍。然而,有限的研究调查了FASD筛查对父母和儿童的影响.
这项探索性研究旨在研究参与大曼彻斯特FASD积极病例确定患病率研究筛查的一小部分父母的经验,英国(ADD-GM研究)。
采访了六位家长,他们8-10岁的孩子,进行筛查(包括3例FASD)。对收集的数据进行了专题分析,以确定关键主题和模式。
分析表明,父母认为参与这项研究是值得的,他们的孩子要么喜欢,要么对数据收集过程漠不关心。患有FASD的儿童的父母报告说,尽管结果令人惊讶,他们并没有觉得这次经历过于痛苦。
研究结果表明,父母普遍积极地看待参与,并认为负面影响有限。这些见解有助于更好地理解与筛查儿童FASD相关的挑战和益处。
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