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Chaos, vulnerability and control: parental beliefs about neonatal clinical trials

Journal of Perinatology volume 29, pages 156–162 (2009)Cite this article

Abstract

Objective:

This study examined parental beliefs about participating in clinical trials involving greater than minimal risk to their neonate, and explored their views of their experiences.

Study Design:

In this qualitative descriptive study, parents in the neonatal intensive care unit (NICU) who had been approached for permission for their neonates to be enrolled in research were asked to describe their decisions about their consent for or disagreement to their neonate's research participation. A total of 27 parents from three different hospital NICUs in the Mid-Atlantic region of the United States participated. Transcribed interviews were analyzed using qualitative content analysis.

Results:

Participant decisions developed through a dynamic process of meaning-making based on their beliefs about themselves and their neonates. The processes involved making sense of the chaos that they perceived in the environment and their own vulnerability, through taking control of their situation.

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Acknowledgements

This study was completed while author was doctoral student at The University of Pennsylvania and was supported by Ruth L Kirschstein National Research Service Award for Pre-Doctoral Fellowship 1 F31 NR008962 (NINR) 2005–2007, Sigma Theta Tau Xi Chapter Research Grant 2006–2007, CTRC UL1-RR-024134, research on Vulnerable Women, Children and Families 5-T32-NR-007100 (NIH) 2004–2005.

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  1. School of Nursing, University of Medicine and Dentistry of New Jersey, Newark, NJ, USA

    F R Ward

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Correspondence to F R Ward.

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Ward, F. Chaos, vulnerability and control: parental beliefs about neonatal clinical trials. J Perinatol 29, 156–162 (2009). https://doi.org/10.1038/jp.2008.139

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