Background: 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. Methods: 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. Results: 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. Conclusions: Child health researchers could enhance participation by using recruitment resources and enrollment strategies that match parent preferences, including engagement by on-site PBRN staff.
Background Screening Wizard (SW) is a technology-based decision support tool aimed at guiding primary care providers (PCPs) to respond to depression and suicidality screens in adolescents. Separate screens assess adolescents’ and parents’ reports on mental health symptoms, treatment preferences, and potential treatment barriers. A detailed summary is provided to PCPs, also identifying adolescent-parent discrepancies. The goal of SW is to enhance decision-making to increase the utilization of evidence-based treatments. Objective This qualitative study aims to describe multi-stakeholder perspectives of adolescents, parents, and providers to understand the potential barriers to the implementation of SW. Methods We interviewed 11 parents and 11 adolescents and conducted two focus groups with 18 health care providers (PCPs, nurses, therapists, and staff) across 2 pediatric practices. Participants described previous experiences with screening for depression and were shown a mock-up of SW and asked for feedback. Interviews and focus groups were transcribed verbatim, and codebooks were inductively developed based on content. Transcripts were double coded, and disagreements were adjudicated to full agreement. Completed coding was used to produce thematic analyses of the interviews and focus groups. Results We identified five main themes across the interviews and focus groups: parents, adolescents, and pediatric PCPs agree that depression screening should occur in pediatric primary care; there is concern that accurate self-disclosure does not always occur during depression screening; SW is viewed as a tool that could facilitate depression screening and that might encourage more honesty in screening responses; parents, adolescents, and providers do not want SW to replace mental health discussions with providers; and providers want to maintain autonomy in treatment decisions. Conclusions We identified that providers, parents, and adolescents are all concerned with current screening practices, mainly regarding inaccurate self-disclosure. They recognized value in SW as a computerized tool that may elicit more honest responses and identify adolescent-parent discrepancies. Surprisingly, providers did not want the SW report to include treatment recommendations, and all groups did not want the SW report to replace conversations with the PCP about depression. Although SW was originally developed as a treatment decision algorithm, this qualitative study has led us to remove this component, and instead, SW focuses on aspects identified as most useful by all groups. We hope that this initial qualitative work will improve the future implementation of SW.
Background: 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. Methods: 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. Results: 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. Conclusion: 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.
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