Engster Stacey A, Fascetti Carrie, Daw Kristine, Cohen Reis Evelyn
From the University of Pittsburgh Clinical and Translational Science Institute, Pediatric PittNet, Pittsburgh, PA (SAE, CF, KD, ECR); Department of Pediatrics, University of Pittsburgh School of Medicine, Division of General Academic Pediatrics, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA (SAE, ECR).
J Am Board Fam Med. 2019 Sep-Oct;32(5):685-694. doi: 10.3122/jabfm.2019.05.190030.
Recruitment efforts for child health research are often based on assumptions, therefore improving knowledge about parents' perceptions and preferences could enhance engagement.
AIM/OBJECTIVE: 1) To describe parents' perceptions about and preferences for participation in child health research within a pediatric practice-based research network (PBRN), and 2) to investigate any associations with the presence of on-site PBRN research staff, office location, and child age.
We conducted a 2-phase study with a convenience sample of parents from diverse office settings. Phase 1 was a qualitative assessment using semistructured, in-person interviews. Phase 2 consisted of a quantitative self-administered survey assessing: 1) perceptions of importance, benefits/motivations, and risks/barriers of child health research, and 2) preferences for recruitment method and enrollment location.
Parents (n = 627) uniformly perceived child health research to be important in prevention (89%), diagnosis (89%), and treatment (92%). They were motivated to participate most commonly by altruism and rarely by compensation. Parents perceived side effects (60%), discomfort (52%), and time (45%) as the main risks of participation. Most parents preferred to learn about research opportunities at their pediatric office (70%), and if interested, to enroll their child in their pediatric office (57%) or in their home (52%). Parents were significantly more altruistic and interested in participation in offices with on-site PBRN research staff and greater proximity to the University.
Child health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff.
儿童健康研究的招募工作通常基于假设，因此增进对家长看法和偏好的了解有助于提高参与度。
1）描述家长对参与基于儿科实践的研究网络（PBRN）中的儿童健康研究的看法和偏好；2）调查与现场PBRN研究人员的存在、办公地点和儿童年龄之间的关联。
我们对来自不同办公环境的家长进行了一项两阶段的便利抽样研究。第一阶段是使用半结构化的面对面访谈进行定性评估。第二阶段包括一项定量的自我管理调查，评估：1）对儿童健康研究的重要性、益处/动机以及风险/障碍的看法；2）对招募方法和登记地点的偏好。
627名家长一致认为儿童健康研究在预防（89%）、诊断（89%）和治疗（92%）方面很重要。他们参与的最常见动机是利他主义，很少是为了报酬。家长认为副作用（60%）、不适（52%）和时间（45%）是参与的主要风险。大多数家长更喜欢在儿科诊所了解研究机会（70%），如果感兴趣，更愿意让孩子在儿科诊所（57%）或家中（52%）登记参与研究。在有现场PBRN研究人员且离大学更近的诊所，家长明显更具利他主义精神且对参与研究更感兴趣。
儿童健康研究人员可以通过使用与家长偏好相匹配的招募资源和登记策略来提高参与度，包括现场PBRN工作人员的参与。
