An Exploratory Study of Pediatric Oncology Nurses’ Perceptions of and Advocacy Responses to Ethical Issues in Securing Informed Consent in Adolescent and Young Adult Patients

Abstract

The purpose of the study was to explore pediatric oncology nurses’ perceptions of ethical issues that may arise in the process of obtaining informed consent in adolescent and young adult patients (aged 16-24 years) who participate in clinical research trials and to examine if nurses engage in advocacy on behalf of these patients. A descriptive, exploratory research design utilizing an anonymous online survey was used for this study. The sample consisted of registered nurses living in the United States currently employed full or part-time in direct care roles with pediatric oncology patients. A total of 270 participants was recruited from three sources: 1) a contact population of pediatric oncology nurses via email using purposive sampling design techniques through an online database service specializing in health care marketing and research, 2) a contact population of pediatric oncology nurses via email using purposive sampling design techniques through the pediatric specialty organization member list, and 3) by email invitations submitted to former colleagues and pediatric nurse educators at national cancer hospitals with pediatric oncology units. Data was analyzed using descriptive statistics (variance, and standard deviation), tests of differences, analyses of covariance, and correlation (Pearson’s and Partial Correlations). A statistical significance of α < .05 was the standard used for this research. Results of the research study provided new data and insights about pediatric oncology nurses’ perceptions of ethical issues that often arise in obtaining informed consent in adolescent and young adult cancer patients and nurses’ advocacy behavioral actions on behalf of this population. Published results will help fill a gap in current oncology research literature.