From the Department of Pediatrics, University of Pittsburgh School of Medicine, Division of General Academic Pediatrics, UPMC Children's Hospital of Pittsburgh (SAE, ECR); University of Pittsburgh Clinical and Translational Science Institute, Pediatric PittNet, PA (SAE, CF, AM, ECR); University of Pittsburgh Clinical and Translational Science Institute, Pediatric PittNet Parent Panel, PA (KP).
J Am Board Fam Med. 2020 Sep-Oct;33(5):665-674. doi: 10.3122/jabfm.2020.05.200050.
Additional strategies are needed for longitudinal engagement of parents as key stakeholders in practice-based research networks (PBRNs). Our objective was to create a virtual Parent Panel for our PBRN to engage parents remotely and use their input on child health research.
We used an existing online parent survey study to invite parents to participate longitudinally by completing brief, monthly online questionnaires about child health research topics. The existing survey assessed perceptions and preferences for pain management of routine child vaccinations.
Of 412 parents who completed the existing online survey, 233 parents expressed interest in participating in our Parent Panel and 131 parents confirmed interest. Of those parents, 105 provided demographic information: most were female (96%), married (83%), white (84%), between 31 to 40 years (61%), and had a college degree (83%). Parents were motivated to participate in our Parent Panel for a variety of reasons: altruism, a unique perspective, having a voice within child health research, a personal history of working within health care/research, and previous health care experiences with their children. Parents thought their participation could help research, parents, and children. We sent monthly electronic surveys with increasing parent enrollment to up to 131 parents, with monthly response rates ranging from 35% to 80%. Multiple changes have been implemented in our PBRN based on parent feedback.
We successfully created and longitudinally maintained a virtual Parent Panel by using valuable parent feedback to make changes in our PBRN. PBRNs could adapt a similar strategy to virtually engage parents as key stakeholders for improving child health research.
需要额外的策略来让家长作为实践型研究网络（PBRN）中的主要利益相关者，进行纵向参与。我们的目标是为我们的 PBRN 创建一个虚拟家长小组，以便远程与家长互动，并在儿童健康研究中利用他们的意见。
我们使用现有的在线家长调查研究，邀请家长通过每月在线完成简短的问卷，参与儿童健康研究主题的研究，从而长期参与。现有的调查评估了家长对常规儿童疫苗接种疼痛管理的看法和偏好。
在完成现有在线调查的 412 位家长中，有 233 位家长表示有兴趣参与我们的家长小组，其中有 131 位家长确认了兴趣。在这些家长中，有 105 位提供了人口统计学信息：大多数是女性（96%）、已婚（83%）、白人（84%）、年龄在 31 至 40 岁之间（61%）、拥有大学学历（83%）。家长们参与我们的家长小组有多种动机：利他主义、独特的视角、在儿童健康研究中有发言权、有在医疗保健/研究领域工作的个人经历、以及他们孩子以前的医疗保健经验。家长们认为他们的参与可以帮助研究、家长和孩子。我们向多达 131 位家长发送了带有不断增加家长参与的每月电子调查，每月的回复率从 35%到 80%不等。根据家长的反馈，我们在 PBRN 中实施了多项更改。
我们通过利用有价值的家长反馈，成功地创建并长期维持了一个虚拟家长小组，从而对我们的 PBRN 进行了更改。PBRN 可以采用类似的策略，虚拟地让家长作为主要利益相关者，参与改善儿童健康研究。
