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Learning Objective 1: Discuss the meaning of research participation to women who have been diagnosed with ovarian cancer.
Learning Objective 2: Describe the variables that facilitate participation in, or hinder access to, research participation in women who have been diagnosed with ovarian cancer.
Overall accessibility to studies and stated inclusion/exclusion criteria create disparities in research participation. Whether it is decreased access to protocols or the exclusion of potential participants from available studies, women express frustration and anger at the lack of inclusion. Conversely, women may feel coerced into participating, lack choices or information to make autonomous decisions, or choose to participate out of fear or hopelessness. Others may participate because the standard treatment has failed or they do not have the financial means to access other forms of treatment. Understanding the physical, economic, geographic, political, and psycho-social parameters that facilitate participation or hinder access aids the researcher in planning rigorous, humanistic, and accessible protocols.
The purpose of this study is to explore the thoughts and feelings of women diagnosed with ovarian cancer regarding access to drug trials and other cancer research. The overarching questions:
(1) What has your experience been with research protocols since being diagnosed with ovarian cancer?
(2) What do the phrases “inclusion criteria” and “exclusion criteria” mean to you?
The Internet has removed geographic barriers to collecting data. A phenomenological design employing focus groups and online surveys designed to elicit qualitative data will be used. Colaizzi's method of analysis will be used to identify, extract, and organize themes via manual indexing and coding. This project is currently in progress.