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Engaging children and families in pediatric Health Research: a scoping review
Research Involvement and Engagement Pub Date : 2019-11-04 , DOI: 10.1186/s40900-019-0168-9
Rachel Flynn 1 , Sarah Walton 1 , Shannon D Scott 1
Affiliation  

Patient engagement (PE) in pediatric health services research is challenging due to contextual factors such as busyness of parenting, work schedules, and diverse family structures. This scoping review seeks to comprehensively map current PE strategies with parents and families across existing published pediatric health research literature. We followed Arksey and O’Malley (2005) and Levac et al., (2010) six-stage scoping review process. We conducted the search strategy in Medline, Embase, CINAHL, and Psychinfo databases. Data were extracted from included articles; evidence tables were developed and narrative synthesis was completed. Of 3925 retrieved records, seventeen articles were included in the review. Patient engagement primarily occurred through strategies such as advisory groups, meetings, focus groups and interviews. Strategies were used to engage patients at various levels, for different purposes (e.g., to inform, participate, consult, involve collaborate and/or lead). These strategies were also used at various stages of the research process. Navigating power differences, time and money were commonly reported challenges. Inconsistent terminology plagued (e.g., stakeholder engagement, consumer participation, patient and public involvement, participatory research) this body of literature and clarity is urgently needed. This review offers insights into current PE strategies used in pediatric health services research and offers insight for researchers considering employing PE in the future.

中文翻译:

让儿童和家庭参与儿科健康研究:范围审查

由于诸如养育忙碌、工作日程和多样化的家庭结构等背景因素,儿科健康服务研究中的患者参与 (PE) 具有挑战性。该范围审查旨在通过现有已发表的儿科健康研究文献与父母和家庭全面映射当前的 PE 策略。我们遵循 Arksey 和 O'Malley (2005) 以及 Levac 等人 (2010) 的六阶段范围审查过程。我们在 Medline、Embase、CINAHL 和 Psychinfo 数据库中执行了搜索策略。数据是从纳入的文章中提取的;制定了证据表并完成了叙述性综合。在检索到的 3925 条记录中,有 17 篇文章被纳入综述。患者参与主要通过咨询小组、会议、焦点小组和访谈等策略进行。出于不同目的(例如,告知、参与、咨询、参与合作和/或领导),使用了策略来吸引不同级别的患者。这些策略也用于研究过程的各个阶段。驾驭能力差异、时间和金钱是普遍报告的挑战。不一致的术语困扰着(例如,利益相关者参与、消费者参与、患者和公众参与、参与性研究),迫切需要这种文献和清晰度。这篇综述提供了对当前儿科健康服务研究中使用的 PE 策略的见解,并为考虑在未来使用 PE 的研究人员提供了见解。这些策略也用于研究过程的各个阶段。驾驭能力差异、时间和金钱是普遍报告的挑战。不一致的术语困扰着(例如,利益相关者参与、消费者参与、患者和公众参与、参与性研究),迫切需要这种文献和清晰度。这篇综述提供了对当前儿科健康服务研究中使用的 PE 策略的见解,并为考虑在未来使用 PE 的研究人员提供了见解。这些策略也用于研究过程的各个阶段。驾驭能力差异、时间和金钱是普遍报告的挑战。不一致的术语困扰着(例如,利益相关者参与、消费者参与、患者和公众参与、参与性研究),迫切需要这种文献和清晰度。这篇综述提供了对当前儿科健康服务研究中使用的 PE 策略的见解,并为考虑在未来使用 PE 的研究人员提供了见解。
更新日期:2020-04-22
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