杂志文章@ 2152-7202 %I JMIR出版物V 14% N 1卡塔尔世界杯8强波胆分析% P e33485 %T联合设计改进新生儿血点筛查结果与父母的沟通:混合方法研究Chudleigh,Jane Shakespeare,Lynette Holder,Pru Chinnery,Holly Hack,Gemma Gill,Tanya Gould,Rachel Southern,Kevin W . A Olander,Ellinor K . A Morris,Stephen Bonham,James R . A Simpson,Alan Moody,Louise + Cicely Saunders学院，伦敦国王学院，丹麦山，SE5 9RS，英国，44 02078485590，jane.2.chudleigh@kcl.ac.uk %K基于经验的联合设计%K新生儿筛查%K健康沟通%K参与性研究%D 2022 %7 27.7.2022 %9原始论文%J J参与医学%G英语%X背景:在英国，每年有近10,000名父母被告知他们孩子的新生儿血点筛查(NBS)阳性结果。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21名父母(13/21,62%的母亲和8/21,38%的父亲)探讨经验和联合设计解决方案，这些父母来自同一3个国家卫生服务信托机构的14名儿童。通过与卫生专业人员进行半结构化访谈，收集现有服务的经验。对父母的叙事采访被拍摄成一个合成电影。 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 %M 35896023 %R 10.2196/33485 %U https://jopm.www.mybigtv.com/2022/1/e33485 %U https://doi.org/10.2196/33485 %U http://www.ncbi.nlm.nih.gov/pubmed/35896023