Informing subjects of epidemiologic study results.
To assess the feasibility and process of providing feedback to parents regarding the results of epidemiologic research, in particular to look at the importance and clarity of the information provided, parental reactions to the results, and utilization of the data provided.
Parents who participated in an epidemiologic study of pediatric brain tumors (patient and control mothers) were sent a letter summarizing the results of the study and the Parent Study Results Survey to complete and return.
The final sample used for analyses was 109 (patient) and 90 (control) mothers.
Analyses were conducted to determine differences between patient and control mothers and differences among subsets defined by educational level and vital status of the patient.
Mothers rated the importance and clarity of the information very highly, although patient mothers were more likely than control mothers to want more information and a telephone contact.
Patient and control mothers were similar in reported sadness, anxiety, and being overwhelmed, but patient mothers felt less satisfied and relieved.
Patient mothers expressed feeling more guilt and anger than control mothers, although even the levels among the patient mothers were only moderate.
Close to half of all mothers commented on the inconclusiveness of the study results.
Nearly all mothers indicated they would suggest that other parents participate in epidemiologic research.
It is va...
Mots-clés Pascal : Recherche scientifique, Epidémiologie, Tumeur maligne, Information public, Résultat, Communication information, Parent, Etats Unis, Homme, Amérique du Nord, Amérique
Mots-clés Pascal anglais : Scientific research, Epidemiology, Malignant tumor, Public information, Result, Information communication, Parent, United States, Human, North America, America
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 96-0224984
Code Inist : 002B30A01C. Création : 199608.