As someone who spends a fair amount of time conducting research, I am always interested in ways to make it easier and more enticing for parents to consent to participate in research studies. If more people participate, the results are more powerful and potentially more generalizable.
You can thus imagine my excitement when I saw the title of an article by Dr. Julia Nathe and colleagues from the University of Washington and University of California-Los Angeles that is being early released this week by Pediatrics: “Parental Views of Facilitators and Barriers to Research Participation: A Systematic Review” (10.1542/peds.2022-058067).
The authors systematically reviewed 70 articles describing parental decision-making with regards to pediatric research studies. They took an unusual, but important, approach – they focused on the views of parents who declined participation. If we only know why people say yes, that’s helpful, but it’s more helpful to know why people say no.
There is a lot of useful information in this systematic review, and I would encourage all researchers to read the entire article.
For example, the most common reasons for parents to say YES were:
- If they felt that their child would directly benefit from being in the study
- If they felt that research was important
The most common reasons for parents to say NO were:
- Concerns about the specific study (for example, if they were concerned about risks to the child) or about research in general
- Logistics or psychological stress of participation would be too burdensome
- Lack of trust or distrust in the researchers, in research or medicine in general, or in the particular institute or clinician
As researchers or as clinicians helping researchers find patients to participate in their clinical studies, we need to understand these concerns – and figure out ways to address them. We need to take the time to discuss parental concerns and consider ways to lessen the logistical and psychological burden of participation.