A small number of studies have examined parents' beliefs about neonatal research. Most existing studies were conducted in countries other than the United States. The purpose of the proposed study is to examine parental beliefs about neonatal research involving greater than minimal risk with the potential for direct benefit to the premature neonate. The specific methodology used in the proposed study will be focus group interviews to obtain a better understanding of the beliefs of parents who had been asked to enroll their premature neonates in clinical trials. The investigator will moderate an estimated number of at least 4 focus groups of 6 individuals each. These focus groups will consist of mothers who enrolled their neonates in clinical trials, mothers who declined to enroll their neonates in clinical trials, fathers who enrolled their neonates in clinical trials, and fathers who declined to enroll their neonates in clinical trials. The settings for the study are The Hospital of the University of Pennsylvania, Pennsylvania Hospital, and Children's Hospital of Philadelphia. Qualitative analysis will occur concurrently with data collection following customary qualitative analysis practices.
| Ward, Frances Rieth (2010) Parents' views of involvement in concurrent research with their neonates. J Empir Res Hum Res Ethics 5:47-55 |
| Ward, F R (2009) Chaos, vulnerability and control: parental beliefs about neonatal clinical trials. J Perinatol 29:156-62 |
