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Parents' perspectives on having their children interviewed for research
Emily K Hadley1, Carrol A M Smith, Agatha M Gallo
1University of Illinois at Chicago, Chicago, IL, USA.
Research in Nursing & Health
|January 1, 2008
Summary
Parents generally permit research interviews for children with single gene conditions. Key stipulations include age-appropriate content and child-centered approaches for successful genetic research engagement.
Area of Science:
- Pediatric Genetics
- Qualitative Research
- Bioethics
Background:
- Research involving children with single gene conditions requires careful consideration of parental perspectives.
- Understanding parental concerns is crucial for ethical and effective child participant recruitment.
Purpose of the Study:
- To explore parents' views on conducting research interviews with their children diagnosed with single gene conditions.
- To identify parental stipulations for future research interviews involving their children.
Main Methods:
- Qualitative descriptive design employed.
- 142 parents of children with single gene conditions were interviewed between 2002 and 2003.
- Semi-structured interviews included specific questions on perspectives regarding future child interviews.
Main Results:
- Nearly all parents agreed to allow interviews with their children.
- Common stipulations included age-appropriateness, limiting direct information to the child, parental input, and a child-friendly environment.
- Parents expressed willingness to collaborate when their concerns are addressed.
Conclusions:
- Researchers must actively involve parents and address their stipulations to facilitate child participation in genetic studies.
- Adhering to parental guidelines ensures a more collaborative and ethical research process.
- This approach enhances the inclusion of children with single gene conditions in research.
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