Stakeholder engagement in a study of two parent-based programs to - - PowerPoint PPT Presentation

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

2

Marizen Ramirez

• Has nothing to disclose.

3

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

4

Compare the effectiveness of 2 Parent-based interventions to Support Children after Traumatic Injury

N=155

A Program to Aid Your Child’s Emotional Recovery From Trauma

N=159

SO YOU’VE BEEN IN AN ACCIDENT

A BOOK FOR PARENTS ABOUT DEALING WITH ACCIDENTS

• UI Children’s Hospital
• Blank Children’s Hospital
• Children’s Minnesota
• Children’s Mercy

5

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?

6

Who are stakeholders?

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

7

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

8

Table 1. Stakeholder involvement by topic and study period.

Study component Institutional stakeholders (n=45) Community stakeholders (n=9) Patient/parent stakeholders** (n=12) Other: all-site engagement meeting (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 1 During 40 7 2 After 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.

9

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?

10

Planning the Study: Voices expressing the need for this work

Psychological evaluation is important…and I think it is an under addressed issue

Pediatric Health Care provider

You have to validate their feelings – they are 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.

Mother of boy who suffered ATV injury

11

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

12

Conducting the Study: Feedback to improve study design

There was some repetition of the questions… I felt like it was the same page being asked over again just in a different way. It would be nice if it was just a little bit shorter

Fewer forms, shorter surveys When you get home…you have more time to think about it, and that’s when I was able to sit down and look at things 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? It was a bit awkward how it was

• introduced. There wasn’t the
• privacy. It was an open setting.

We did go to an area that was more private, but it was still a public area More privacy when study is introduced

13

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

14

Perspectives on intervention dissemination/adaptation

Settings for Dissemination/Adaptations Facilitators Barriers

Schools

• Have school staff ready to

be trained

• Leadership
• Busy
• Limited funding
• School leadership

Hospital Settings (acute/outpatient)

• User-friendly design
• Need for professional

training

• Large organizations
• Patients see different

staff

Support Groups

• Natural setting for sharing

experiences

• Voluntary
• Rural challenges

Website and Social Media Resources

• Easy to access
• Online privacy issues

15

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

16

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

17

Questions?

18

Thank You!

Marizen Ramirez, MPH, PhD

Associate Professor, Division of Environmental Health Sciences University of Minnesota School of Public Health September 19, 2019