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Parental opinions about clinical research
Marilyn C Morris1, Deborah Besner, Hector Vazquez
1Department of Pediatrics, Division of Critical Care Medicine, The Children's Hospital of New York-Presbyterian, Columbia University, New York, New York 10032, USA. mcm2113@columbia.edu
Insights
Parents generally support pediatric clinical research but have concerns, especially regarding emergency settings. Addressing these parental concerns is crucial for effective clinical research planning and communication.
Area of Science:
- Pediatric clinical research ethics
- Parental perceptions in healthcare research
Background:
- Parental support for pediatric clinical research is vital for advancing child health.
- Understanding parental concerns is key to ethical research conduct.
Purpose of the Study:
- To assess parental views on clinical research involving children.
- To identify specific parental concerns, particularly in emergency research.
- To explore strategies for addressing these concerns.
Main Methods:
- A mixed-methods survey was conducted in a pediatric tertiary care hospital and clinics.
- 136 family caregivers participated, providing quantitative and qualitative data.
Main Results:
- 81% of parents agreed that physicians should conduct research involving children.
- Concerns included researchers prioritizing research over patients (18%) and protocol adherence potentially harming the child (13%).
- Emergency research was less supported due to concerns about therapy delays and physician distraction.
Conclusions:
- Parents are largely supportive of pediatric clinical research.
- Specific parental concerns, especially regarding emergency research, require careful consideration in research design and communication strategies.
Objective:
To characterize parental perception of clinical research, particularly in emergency settings. To identify specific aspects of clinical research that concern parents and to discuss how these concerns can be addressed.
Study Design:
Quantitative and qualitative survey in tertiary care children's hospital and affiliated clinics.
Results:
Family caregivers (n = 136) participated in this study; 81% of study participants agreed or strongly agreed that physicians should do research involving children, with 5% disagreeing. However, 18% felt that researchers care more about the research than about the patient, and 13% believed that when a child is in a research study, physicians must follow the research protocol even if it is not in the best interest of the child. Participants were significantly less likely to endorse the conduct of research in an emergency setting than in a nonspecified setting (P < .001). Parents' foremost concern about emergency research was that it could delay therapy or distract physicians' attention from the child's needs.
Conclusion:
Parents largely support pediatric clinical research, but they have specific concerns that should be addressed in research planning and in communicating with parents about clinical research.
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