Walsh Catharine M, Jones Nicola L, McCreath Graham A, Connan Veronik, Pires Linda, Chen Autumn Q H, Karoly Aliza, Macarthur Colin
Division of Gastroenterology, Hepatology and Nutrition and the SickKids Research and Learning Institutes, The Hospital for Sick Children, Department of Paediatrics and the Wilson Centre, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Division of Gastroenterology, Hepatology and Nutrition and the SickKids Research Institute, The Hospital for Sick Children, Department of Paediatrics and Department of Physiology, University of Toronto, Toronto, ON, Canada.
Front Pediatr. 2022 Jul 6;10:849959. doi: 10.3389/fped.2022.849959. eCollection 2022.
Engaging patients and families as research partners increases the relevance, quality, and impact of child health research. However, those interested in research engagement may feel underequipped to meaningfully partner. We sought to co-develop an online learning (e-learning) module, "Research 101," to support capacity-development in patient-oriented child health research amongst patients and families.
Module co-development was co-led by a parent and researcher, with guidance from a diverse, multi-stakeholder steering committee. A mixed-methods usability testing approach, with three iterative cycles of semi-structured interviews, observations, and questionnaires, was used to refine and evaluate the e-learning module. Module feedback was collected during testing and a post-module interview, and with the validated System Usability Scale (SUS), and satisfaction, knowledge, and self-efficacy questionnaires. Transcripts and field notes were analyzed through team discussion and thematic coding to inform module revisions.
Thirty participants fully tested Research 101, and another 15 completed confirmatory usability testing (32 caregivers, 6 patients, and 7 clinician-researchers). Module modifications pertaining to learner-centered design, content, aesthetic design, and learner experience were made in each cycle. SUS scores indicated the overall usability of the final version was "excellent." Participants' knowledge of patient-oriented research and self-efficacy to engage in research improved significantly after completing Research 101 ( < 0.01).
Co-development and usability testing facilitated the creation of an engaging and effective resource to support the scaling up of patient-oriented child health research capacity. The methods and findings of this study may help guide the integration of co-development and usability testing in creating similar resources.
让患者及其家庭作为研究伙伴参与进来,可提高儿童健康研究的相关性、质量和影响力。然而,那些对参与研究感兴趣的人可能觉得自己缺乏有意义地开展合作的能力。我们试图共同开发一个在线学习(电子学习)模块“研究基础101”,以支持患者及其家庭在以患者为导向的儿童健康研究方面的能力发展。
模块的共同开发由一位家长和一位研究人员共同牵头,并在一个多元化、多利益相关方的指导委员会的指导下进行。采用混合方法可用性测试方法,通过三个半结构化访谈、观察和问卷调查的迭代循环,对电子学习模块进行完善和评估。在测试期间、模块后访谈以及使用经过验证的系统可用性量表(SUS)以及满意度、知识和自我效能量表时收集模块反馈。通过团队讨论和主题编码对转录本和现场记录进行分析,为模块修订提供信息。
30名参与者对“研究基础101”进行了全面测试,另外15人完成了验证性可用性测试(32名护理人员、6名患者和7名临床研究人员)。在每个循环中都对与以学习者为中心的设计、内容、美学设计和学习者体验相关的模块进行了修改。SUS分数表明最终版本的整体可用性“极佳”。完成“研究基础101”后,参与者对以患者为导向的研究的知识和参与研究的自我效能有了显著提高(<0.01)。
共同开发和可用性测试有助于创建一个引人入胜且有效的资源,以支持扩大以患者为导向的儿童健康研究能力。本研究的方法和结果可能有助于指导在创建类似资源时整合共同开发和可用性测试。