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Stakeholder engagement in a study of two parent-based programs to support children impacted by traumatic injury Marizen Ramirez, MPH, PhD Associate Professor, Division of Environmental Health Sciences, University of Minnesota September 19, 2019

Marizen Ramirez • Has nothing to disclose. 2

Background: Children need supports to prevent long-term psychological sequelae of physical injury • Injuries are the #1 leading cause of death and hospitalization for children ages 1-17 (Borse, 2008) • Each year, over 9 million children seek emergency care, and 225,000 require hospitalization (CDC, 2012) • While the vast majority recover from their physical scars, up to 1/3 will develop PTSD (Olofsson, 2009; Stallard, 1998; Aaron, 1999) Parent-based interventions are needed to support children, post-trauma after return to their communities 3

Compare the effectiveness of 2 Parent-based interventions to Support Children after Traumatic Injury N=159 N=155 A Program to Aid Your Child’s SO YOU’VE BEEN IN AN ACCIDENT A BOOK FOR PARENTS ABOUT DEALING WITH ACCIDENTS Emotional Recovery From Trauma • UI Children’s Hospital • Blank Children’s Hospital • Children’s Minnesota • Children’s Mercy 4

Goal: Study the process of engagement • How did stakeholders influence the research questions, implementation, dissemination and future directions of the present research study? • What were challenges and lessons learned for future research studies? 5

Who are stakeholders? Institutional Stakeholder Community Stakeholder Patient Partners Partners Partners Clinical experts Community agencies Patients (children themselves) Healthcare providers Local health organizations Family members Members of hospital Schools Caregivers advisory councils Organizations representing Former study participants the population of interest (patients and parents) (children) 6

Methods for Study • Consultations • Informal and formal institutional stakeholder meetings • Interviews with parent, children, community partners • Focus groups • Collaborative Board Meetings (virtual and in-person) Quantitative data tracking of points of engagement 7

Table 1. Stakeholder involvement by topic and study period. Study component Institutional stakeholders Community stakeholders Patient/parent stakeholders** Other: all-site engagement meeting (n=45) (n=9) (n=12) (n=1) Study topic involvement*, indicated by ‘X’ Recruitment X X X X Survey design X X X X Follow-up X X X X Intervention booster calls X - X X Additional data X - X X Reporting results X X X X Dissemination X X X X Manuscript collaboration X - - - Recommendations X X X X Occurrence within study period Before 5 0 1 0 During 40 7 2 0 After 0 2 9 1 *involvement represents number of activities, not number of individuals. **As a result of these 12 patient partner activities, 27 individual interviews were conducted. 8

Engagement Steps while Planning the Study • Focus Groups • Providers • Parents • Meetings with institutional stakeholders • KEY ISSUES: • Should we do this study? • Where do we do this study – ED or inpatient setting? • Challenging to enroll parents in a study after child has been injured? 9

Planning the Study: Voices expressing the need for this work Psychological evaluation is important…and I think it is You have to validate their feelings – they are an under addressed issue entitled to that. But I wasn’t going to let me son wallow, (feeling) “this is going to be the end of my life because I can’t do anything for 2 months.” That’s not acceptable for me. But I’d try to always listen when he was frustrated or angry. Pediatric Health Care provider Mother of boy who suffered ATV injury 10

Engagement Methods while Conducting the Study • Informal and formal stakeholder meetings • Each clinical site • All-site Collaborative Board Meetings • Individual Interviews (N=27) • Patient partners: 1) parent-child dyads who completed study; 2) parent- child dyads with hx of injury but naïve to study • Clinical/Community experts: clinicians, social workers, school administrators, and health care providers 11

Conducting the Study: Feedback to improve study design There was some repetition of the It was a bit awkward how it was questions… I felt like it was the introduced. There wasn’t the same page being asked over privacy. It was an open setting. again just in a different way. It We did go to an area that was more private, but it was still a would be nice if it was just a little public area bit shorter Fewer forms, When you get home…you have more shorter surveys More privacy time to think about it, and that’s when I when study is was able to sit down and look at things introduced a little bit more. But it would be nice even like a week or two after you’re home. . . for someone to come out Study procedures at home? 12

Engagement Methods after End of the Study • Collaborative Board Meeting: • In-Person and Virtual Attendance • Agenda • Review and Interpret Preliminary Results • Barriers & facilitators to implementing the intervention • Dissemination strategies and Future Directions – through Nominal Group Technique to reach consensus about next steps 13

Perspectives on intervention dissemination/adaptation Settings for Dissemination/Adaptations Facilitators Barriers • • Have school staff ready to Busy Schools • be trained Limited funding • • Leadership School leadership • • User-friendly design Large organizations Hospital Settings (acute/outpatient) • • Need for professional Patients see different training staff • • Natural setting for sharing Voluntary Support Groups • experiences Rural challenges • • Easy to access Online privacy issues Website and Social Media Resources 14

Conclusions • Stakeholder involvement is top down and bottom up • Engagement includes diverse actors: patient partners, institutional stakeholders and community partners • Multisite engagement is possible, through coordinated systematic efforts • Involving stakeholders can improve study design, and also focuses dissemination efforts and future studies 15

Learn More • www.pcori.org • info@pcori.org • #PCORI2019 • Reference: Woods-Jaeger BA, Sexton CC, Branch C, Bolenbaugh M, Roth L, Stelson EA, Braaten N, Ramirez M. J Comp Eff Res. 2019 Jul;8(9):721-732. Engaging parent–child dyad and healthcare provider stakeholders in a patient- centered comparative effectiveness study 16

Questions? 17

Thank You! Marizen Ramirez, MPH, PhD Associate Professor, Division of Environmental Health Sciences University of Minnesota School of Public Health September 19, 2019 18