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The Risks and Benefits of Conducting Sensitive Research to Understand Parental Experiences of Caring for Infants With Hypoxic–Ischemic Encephalopathy

Allen, Kimberly A.; Kelley, Tiffany F.

Journal of Neuroscience Nursing: June 2016 - Volume 48 - Issue 3 - p 151–159
doi: 10.1097/JNN.0000000000000187

ABSTRACT Aim: The aim of this report is to describe the parental experience of the emotional and physical risks and participant burden of participation in sensitive research about caring for an infant with hypoxic–ischemic encephalopathy. Background: Protecting the ethical rights of participants in research is a main focus of investigators. Evaluating the effect of current methods employed to protect participants in sensitive research is necessary to determine if the participants’ ethical rights are protected. Little research has addressed the parental perspective of participating in sensitive research. Design: The design of this study is a qualitative, descriptive methodology with structured interviews with parents. Methods: Participants were asked to describe their experience of participating in sensitive research. The qualitative data collected were analyzed using content analysis. Interviews were conducted between July 2010 and February 2012. Results: Thirteen parents of infants with hypoxic–ischemic encephalopathy were interviewed. Parents did not report harm or participant burden. Most of these parents found continued participation to be beneficial because they could express intense emotions in a nonjudgmental environment and also reflect on the milestones their child has reached since the traumatic birth experience. Conclusions: This study provides additional evidence to researchers regarding the risks and benefits to participants in sensitive research studies. Individuals are willing to participate in sensitive research, even during stressful times in their lives. The interviews allow participants an outlet to discuss thoughts and feelings and to reflect on past events and gain perspective. Participants do not report experiencing harm when participating in interviews about sensitive research.

Questions or comments about this article may be directed to Kimberly A. Allen, PhD RN, at She is an Assistant Professor, Department of Women, Children and Family Health Science, College of Nursing, University of Illinois-Chicago, Chicago, IL.

Tiffany F. Kelley, PhD MBA RN, is Founder & CEO, Nightingale Apps LLC; Affiliate, Duke University, Durham, NC; and Adjunct Associate Professor, Northeastern University, Boston, MA.

Funding: The study was funded by the National Institutes of Health-National Institute of Nursing Research (1F31NR012083-01, P. I. Allen; T32NR007106, P. I. Landis; R01NR010548, P. I. Docherty) and the American Nurses Foundation, P. I. Allen.

The authors declare no conflicts of interest.

© 2016 American Association of Neuroscience Nurses