Shaping the future of qualitative research in pediatric medicine

The following is a transcript of a conversation between Erica Kaye, MD, MPH, Department of Oncology, and Dylan Graetz, MD, MPH, Director of the Culture and Communication program and assistant member of the Department of Global Pediatric Medicine, discussing their work leading the St. Jude Symposium on Applied Qualitative Research and publishing four associated manuscripts.

What inspired the Symposium on Applied Qualitative Research and the series of manuscripts?

Kaye: I think we were inspired to bring qualitative research experts together from around the world, in part to talk about best practices for how to achieve the highest quality, most rigorous science possible. And so, this was an incredible opportunity to bring these best practices for qualitative science to a broad audience. 

Graetz: The Symposium on Applied Qualitative Research really came up somewhat organically. I was having conversations with Erica about both the need for qualitative research as well as the barriers and obstacles that qualitative researchers were facing. And we needed a space to come together.  

Why do you think the fields of oncology, hematology and child health need updated guidance for qualitative research?

Graetz: One of the biggest things we were trying to do with the symposium and the reviews is establish qualitative research as essential. Being able to ground the audience in the importance of qualitative research, while also providing folks with a resource to conduct and evaluate qualitative research, we felt was the best place to start.  

Kaye: Probably the greatest gap right now, hindering integration of qualitative research into our scientific mainstream, is lack of awareness, lack of understanding, not just around what qualitative research entails, but what its tremendous value added is and to ensure that what we are putting forward is not just helpful, but as Dylan mentioned, essential to making advancements that can positively impact children and families facing serious illness.  

What unique insights can qualitative research provide that other methods might miss?

Kaye: We believe that the beating heart of qualitative research is elevating and centering and honoring the voices of those individuals most deeply affected by a given disease. That's what qualitative research does. It goes directly to those individuals to help generate knowledge that is anchored in the real-world lived experiences of patients and families. 

Graetz: Qualitative research can improve care, I think, at every phase. It helps us understand the questions to ask — what's important to the populations that we serve. 

Kaye: And what qualitative research does best is integrate the voices of those affected by the problem that we're trying to solve at every single step along that research lifecycle. 

Graetz: There are also certain subjects directly related to patient care that just cannot be studied with numbers alone. Before we can ask quantitative questions, we need to conceptualize the problem. And so, there are just a lot of areas where you need to engage with the populations that we're trying to serve, whether that's the clinicians who may need communication training or whether that's to understand stigma in a group of pediatric cancer patients in Zimbabwe. There are just lots of opportunities where the right method for the research question is qualitative. 

Looking ahead, how do you see applied qualitative research evolving in these fields?

Kaye: We believe that the future for qualitative research is very bright. If you look back, even just 10 years ago, there was very little in terms of qualitative approaches. And now, when we look at the field, there is growing awareness of how incredibly important qualitative research is to our science collectively.

Graetz: And by hosting this symposium and publishing these review papers, my hope is that others follow that lead and say, “If St. Jude is doing it, we should also get on board.” And so, I am really proud and grateful to these institutions for championing this work.