Provider-patient communication in managing chronic childhood conditions
Lead Researcher: Gwen Costa Jacobsohn, PhD, Primary Care Research Fellow; UW-Madison School of Medicine and Public Health
What is the focus of your research?
My research looks at the role of provider-patient communication in management of chronic childhood conditions; more broadly, relationship between socioeconomic determinants of health and patient provider communication during clinical interactions. I look at how those clinical interactions affect health outcomes. My overall goal is to improve quality of family-centered care and reduce health disparities.
How has stakeholder engagement helped your project so far?
I came to CARDS® twice. The first time, my goal was to get feedback on recruitment materials. I wanted to attract diverse group of participants, and to make sure my materials spoke to low income, African American, and Latino families. The feedback I received on those materials was phenomenal—it allowed me to reach my recruitment goals, not just the number of families I recruited, but also the diversity I was looking for. My partners at the Pediatric Fitness Clinic (where I recruited) said it was most successful recruitment effort that they’ve seen at their clinic. They were hoping that I could share the lessons I learned from my experience with CARDS® to help other researchers. I told them that they should go to CARDS® meetings! My thought is that you have to be able to get this feedback in person. I can say, “You have too much material,” but it’s so much better to hear it first-hand.
The second time I went was for feedback on interview questions for interviewing families, to see how wording could be improved to elicit better responses, specifically from African American parents. I had the sense that I wasn’t asking questions in right way. I got some great advice on wording and reactions to certain words that I wouldn’t have thought would elicit reactions. It gave me really good food for thought in the way that I conducted those interviews. I had interviews with African American mothers after that—it changed the way I ordered the questions and asked follow-up questions. It changed not just my specific wording, but also my general approach. A lot of what I was trying to get at were stories and narratives, and if you don’t ask the right questions, you won’t get them. [The CARDS® feedback] gave me a way to open the door to those stories. CARDS® suggested talking with people about family’s traditions/habits with food—this opened up conversation, increased comfort levels, and established a better relationship.
What is a lesson you’ve learned from your stakeholder engagement work?
When you come to a CARDS® meeting, you have to check your assumptions at the door. As researchers, we create materials and become attached to them and want to fight for them. That’s not what this is about. If you want to be successful in research, you have to really honor the perspective of the population that you’re trying to work with. You can’t come in with your own assumptions and biases and expect that’s what’s right. We’re supposed to be experts—this kind of experience is how we become experts. For me, it was so valuable to be physically present and listening during the CARDS® meeting, because it wasn’t just feedback I received on flyer. It was listening to what they were saying—their language, their stories—everything they were saying in the process of giving feedback. It’s not just about changing some materials, it’s about changing who I am as a researcher and thinking about the perspective I am taking.
What WINRS services have you used?
- Two CARDS® meetings: one to review recruitment materials and one to review an interview script and questions
Each month, WINRS interviews research teams we’ve worked with to ask about the benefits and challenges related to stakeholder engagement. If you’d like to be interviewed, please email firstname.lastname@example.org