Cancer patient decision-making and relational autonomy related to clinical trial participation

• Main Author: Bell, Jennifer Ann Harrison
• Language: English
• Published: University of British Columbia 2014
• Online Access: http://hdl.handle.net/2429/46381

Clinical trials (CTs) in cancer care play an essential role in advancing knowledge and improving patient care. Low CT enrolment, however, threatens this field of science and may prevent people with cancer from benefiting from the latest therapeutic interventions. The aim of this research was to explore cancer patients’ CT decision-making process and how they exercise relational autonomy within this process. Relational autonomy acknowledges patients are situated within a larger relational and socio-political context that is characterized by inherent power differentials and social inequities that may influence CT decisions. The objectives of this research were to: a) understand cancer patients’ decision-making process related to CT participation and how they exercise relational autonomy within this process; b) examine the personal, social, and system influences on cancer patients’ decision-making process related to CT participation and their ability to exercise their relational autonomy; and c) identify the best practices utilized by CT personnel that support cancer patients in exercising their relational autonomy in the CT decision-making process. Two different yet complementary methodologies, interpretive description and grounded theory, guided in-depth interviews with 12 CT personnel, 40 breast and prostate cancer patients, and 11 support persons to address the objectives. Three major themes were uncovered that impact cancer patients’ decision-making process and ability to exercise their relational autonomy: (1) power differentials between patients and physicians, (2) therapeutic misconception, and (3) inequities in access to CTs. The overarching construct ‘no wo/man is an island’ captured patients’ CT decision-making process and experiences of autonomy, including the relational complexity of CT decisions and the key influences on this process. Results from this research highlight how CT decision-making is a complex endeavor comprised of key phases and processes that are not only personally but also socially and structurally located. Practice implications of this research include targeted education for CT personnel and patients to equalize power relationships within CT recruitment. In addition, standardization of cancer drug approval, better monitoring and follow-up cancer care, and a more accessible and quality healthcare system can address structural barriers in order to support patients’ relational autonomy within the context of CTs.