@文章{信息:doi/10.2196/33485，作者=“Chudleigh, Jane和Shakespeare, Lynette和Holder, Pru和Chinnery, Holly和Hack, Gemma和Gill, Tanya和Gould, Rachel和Southern, Kevin W和Olander, Ellinor K和Morris, Stephen和Bonham, James R和Simpson, Alan和Moody, Louise”，标题=“共同设计改善新生儿血点筛查结果与父母的沟通:混合方法研究”，期刊=“J Particip Med”，年份=“2022”，月份=“7月”，日期=“27”，卷=“14”，数=“1”，页数=“e33485”，关键词=“体验式协同设计;新生儿筛查;健康的沟通;背景:在英国，每年有近10,000名父母被告知他们的孩子的新生儿血点筛查(NBS)结果为阳性。这发生在出生后大约2至8周，具体取决于情况。积极的NBS结果的沟通是一个微妙和熟练的任务，需要思考，准备和证据，以尽量减少潜在的有害的负面后遗症。目前交流内容和结果方式的变化有可能导致父母焦虑和痛苦的增加。目的:本研究的重点是开发联合设计的干预措施，以改善父母为子女获得积极的NBS结果的体验，并加强卫生保健专业人员与父母之间的沟通。方法:采用基于经验的联合设计方法，与英国3个国家卫生服务信托机构的17名卫生专业人员和来自同一3个国家卫生服务信托机构的14名儿童的21名父母(13/ 22,62名母亲和8/ 22,38名父亲)探讨经验和联合设计解决方案。 Experiences with existing services were gathered via semistructured interviews with health professionals. Filmed narrative interviews with parents were developed into a composite film. The co-design process identified priorities for improving communication of positive NBS results through separate parent and health professional feedback events followed by joint feedback events. In total, 4 interventions were then co-designed between the participants through a web-based platform. Results: Parents and health professionals provided positive feedback regarding the process of gathering experiences and identifying priorities. Themes identified from the parent interviews included impact of initial communication, parental reactions, attending the first clinic appointment, impact of health professionals' communication strategies and skills, impact of diagnosis on family and friends, improvements to the communication of positive NBS results, and parents' views on NBS. Themes identified from the health professional interviews included communication between health professionals, process of communicating with the family, parent- and family-centered care, and availability of resources and challenges to effective communication. In response to these themes, 4 interventions were co-designed: changes to the NBS card; standardized laboratory proformas; standardized communication checklists; and an email or letter for providing reliable, up-to-date, condition-specific information for parents following the communication of positive NBS results. Conclusions: Parents and health professionals were able to successfully work together to identify priorities and develop co-designed interventions to improve communication of positive NBS results to parents. The resulting co-designed interventions address communication at different stages of the communication pathway to improve the experiences of parents receiving positive NBS results for their children. International Registered Report Identifier (IRRID): RR2-10.1186/s40814-019-0487-5 ", issn="2152-7202", doi="10.2196/33485", url="https://jopm.www.mybigtv.com/2022/1/e33485", url="https://doi.org/10.2196/33485", url="http://www.ncbi.nlm.nih.gov/pubmed/35896023" }