Thompson Alison P, MacDonald Shannon E, Wine Eytan, Scott Shannon D
Faculty of Nursing, University of Alberta, Edmonton, AB, Canada.
Department of Pediatrics, Division of Pediatric Gastroenterology & Nutrition, University of Alberta, Edmonton, AB, Canada.
JMIR Res Protoc. 2020 Aug 4;9(8):e19108. doi: 10.2196/19108.
The last decade has seen increasing calls for patient and public involvement in health-related research due to an ideological shift toward more equitable methods of knowledge development and an effort to increase the usability and relevance of knowledge by improving outcomes in clinical practice. Patient engagement includes simply informing patients to offering complete decision-making autonomy to individuals, groups, communities, caregivers, friends, and families who have personal experience and knowledge of a health issue. Despite the use of patient engagement methods in research, evaluation has lagged, resulting in a knowledge gap that makes it difficult to foster capacity and sustainability for patients and researchers alike since little is known about how effective patient collaborations in research are built, maintained, or improved. This study centers on pediatric functional constipation, a common condition that affects children and families. Since parents play a pivotal role in treatment, they are an optimal group to engage in improving the resources and support available to them.
This study aims to use patient-engagement methods to establish a research collaboration with parents to cocreate a digital knowledge translation tool for parents caring for a child with functional constipation and formally evaluate the patient engagement processes within this project to build the science of patient engagement in research.
Members of the parent collaborator group will be recruited from previous participants who expressed interest in the development of a digital knowledge translation tool. The group will collaborate with the research team to create a tool to address patients' support and information needs when caring for a child with functional constipation. The parent collaborator group will then be evaluated in a multimethod study design. Data will be digitally and anonymously collected from all members of the parent collaborator group, using the validated Public and Patient Engagement Evaluation Tool (PPEET) patient questionnaire. Descriptive statistics will be used to report group characteristics and question responses. Qualitative analysis will be used to understand open-ended question responses. Specifically, directed content analysis will be used to assess themes of the Patient Engagement in Research (PEIR) Framework with a combination of deductive and inductive analyses. Findings will be integrated into the discussion if there are sufficient commonalities and inter-relationships. The final manuscript will include reporting of each element as described by the Good Reporting of a Mixed Methods Study criteria.
Recruitment is planned for June 2020. Data collection for the evaluation of patient engagement processes will occur upon completion of the digital knowledge translation tool. The results of this study are expected to be published by the end of 2020.
This study will provide valuable information about parents' experiences participating in child-health research and is a fundamental step in building the science of patient engagement in research.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/19108.
在过去十年中，由于知识发展方法朝着更加公平的方向转变，以及通过改善临床实践结果来提高知识的实用性和相关性，要求患者和公众参与健康相关研究的呼声日益高涨。患者参与包括简单地告知患者，到赋予个人、群体、社区、护理人员、朋友和家庭完全的决策自主权，这些人对健康问题有个人经验和知识。尽管在研究中使用了患者参与方法，但评估工作滞后，导致知识差距，这使得难以培养患者和研究人员的能力及可持续性，因为对于如何建立、维持或改善研究中的患者合作知之甚少。本研究聚焦于小儿功能性便秘，这是一种影响儿童及其家庭的常见病症。由于父母在治疗中起着关键作用，他们是参与改善自身可用资源和支持的最佳群体。
本研究旨在运用患者参与方法，与家长建立研究合作关系，共同创建一个针对照顾功能性便秘患儿家长的数字知识转化工具，并正式评估该项目中的患者参与过程，以构建患者参与研究的科学体系。
家长协作组的成员将从之前对数字知识转化工具开发表示感兴趣的参与者中招募。该小组将与研究团队合作，创建一个工具，以满足照顾功能性便秘患儿家长的支持和信息需求。然后，将采用多方法研究设计对家长协作组进行评估。使用经过验证的公众和患者参与评估工具（PPEET）患者问卷，以数字方式并匿名收集家长协作组所有成员的数据。描述性统计将用于报告群体特征和问题回答情况。定性分析将用于理解开放式问题的回答。具体而言，定向内容分析将结合演绎和归纳分析，用于评估研究中患者参与（PEIR）框架的主题。如果存在足够的共性和相互关系，研究结果将纳入讨论。最终稿件将按照混合方法研究的良好报告标准，对每个要素进行报告。
计划于2020年6月进行招募。在数字知识转化工具完成后，将进行患者参与过程评估的数据收集。本研究结果预计于2020年底发表。
本研究将提供有关家长参与儿童健康研究经历的宝贵信息，是构建患者参与研究科学体系的重要一步。
国际注册报告识别码（IRRID）：PRR1-10.2196/19108
