Parents' Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease
Parents' Experiences of Receiving the Initial Positive Newborn Screening (NBS) Result for Cystic Fibrosis and Sickle Cell Disease
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DOI：
10.1007/s10897-016-9959-4
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发表时间：
2016-12-01
影响因子：
1.9
通讯作者：
Metcalfe, Alison
中科院分区：
文献类型：
--
作者：
Chudleigh, Jane;Buckingham, Sarah;Metcalfe, Alison
新生儿筛查计划（NBS）在英国的临床优势在文献中有很好的描述。然而，很少探讨对家庭的心理社会影响。本研究遵循扎根理论的原则，探讨父母对患有囊性纤维化（CF）或镰状细胞病（SCD）的孩子接受初始阳性NBS结果的经验。半结构化，定性访谈进行了22名父母（12名母亲和10名父亲），他们的孩子已被诊断为CF或SCD通过NBS和1岁以下的采访时。从数据中产生的主要主题是;父母以前的知识的条件和国家统计局的方案，交付的方法和父母的反应的结果，与他人分享的结果，对父母关系和支持战略的影响。研究结论表明，大多数父母认为，最初的积极NBS结果应该由具有特定条件知识的健康专业人员提供，最好是父母双方都在场。遗传咨询需要包括对NBS结果对父母关系的影响的关注。需要仔细考虑的战略，以支持父母的婴儿谁有积极的NBS结果在心理健康方面，并帮助他们分享诊断。
The clinical advantages of the newborn screening programme (NBS) in the UK are well described in the literature. However, there has been little exploration of the psychosocial impact on the family. This study followed the principles of grounded theory to explore parents' experiences of receiving the initial positive NBS result for their child with cystic fibrosis (CF) or sickle cell disease (SCD). Semi-structured, qualitative interviews were conducted with 22 parents (12 mothers and 10 fathers) whose children had been diagnosed with CF or SCD via NBS and were under the age of 1 year at the time of interview. The main themes that arose from the data were; parents previous knowledge of the condition and the NBS programme, the method of delivery and parental reactions to the result, sharing the results with others, the impact on parental relationships and support strategies. Study conclusions indicate that most parents thought initial positive NBS results should be delivered by a health professional with condition specific knowledge, preferably with both parents present. Genetic counselling needs to include a focus on the impact of NBS results on parental relationships. Careful consideration needs to be given to strategies to support parents of babies who have positive NBS results both in terms of the psychological health and to assist them in sharing the diagnosis.