As the demand to include children in research increases, researchers are discovering that few methods exist that are specifically designed with children in mind. In this article, the author introduces the draw-and-tell conversation as a child-centered and child-directed approach to data collection and illustrates its use in a qualitative study of children's fear experiences. Twenty-two children, ages 7 and 8 years, participated. Sequential mixed qualitative analyses suggest that children's draw-and-tell conversations provide new insight into how children describe and experience fear and highlight the unique nature of information accessed when using this approach.
Background
The potential for genomic incidental findings is increasing with the use of genome-based testing. At the same time approaches to clinical decision making are shifting to shared decision-making models involving both the healthcare community and the public. The public’s voice has been nearly absent in discussions on managing incidental findings.
Methods
We conducted 9 focus groups and 9 interviews (N=63) with a broad cross-section of lay public groups to elucidate public viewpoints on incidental findings that could occur as a result of genome-based testing in clinical and research situations. Data were analyzed using qualitative content analysis.
Results
Participants wanted incidental findings disclosed to them whether or not these were clinical or research findings. Participants used different terms to define and describe incidental findings; they wanted to know that incidental findings are possible and be given a choice to learn about them. Personal utility was an important reason for disclosure, and participants believed that managing information is a shared responsibility between professionals and themselves.
Conclusion
Broad public input is needed in order to understand and incorporate the public’s perspective on management of incidental findings as disclosure guidelines and policies are developed in clinical and research settings.
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