A Qualitative Descriptive Analysis Of The Experiences Of Blacks In Cancer Clinical Trials

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Doctor of Philosophy (PhD)
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Cancer Clinical Trials
Health Equity
Symptom Burden
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Waite, Terease S.
Waite, Terease S.

Participation in cancer clinical trials (CCTs) is an effective means of reducing cancer disparities among Black cancer patients because they provide an opportunity to receive high quality health care from leading healthcare providers and researchers. Yet, Black cancer patients remain underrepresented in CCTs. The purpose of this study was to understand the patient, family member, physician, and protocol factors that influence Black cancer patients to participate and to remain in CCTs and the day-to-day experiences of Black cancer patients as they navigate their way through the clinical trial process. Albrecht’s model of treatment decision making was used as a theoretical guide. A multimethod approach was used and included a qualitative descriptive design with semi-structured face-to-face interviews with 21 Black cancer patients involved in CCTs and a descriptive statistical analysis of the sample’s sociodemographics and a quantitative measure of symptom burden (the Memorial Symptom Assessment Scale-Short Form). Participants reported mild levels of symptom burden based on the mean values of the assessment scale. Elements of real-time data capture were also used to facilitate collection of four semi-structured cell phone participant interviews over a two month period, in order to understand patient-participants’ everyday experiences in CCTs. The majority of participants self-identified as Black-African American (80%) and attended college or had a college degree (55%). A majority had comorbid conditions (70%) and 40% were diagnosed with Stage 4 cancer. The findings suggest that patient, family member, physician, and protocol factors in Albrecht’s model are important in decision making related to cancer clinical trial participation and retention, but in varying degrees. Patient-participants identified getting a second opinion, helping themselves, and helping others as important factors to their decisions to seek treatment at the Cancer Center and to enroll in CCTs. The support of family members was identified primarily in CCT retention, and the qualities of the cancer physician motivated participant enrollment and retention. These qualities included trust, attentiveness, timely referrals, and willingness to provide detailed explanations of treatment options. Protocol features, such as provision of targeted therapy, randomization, and additional diagnostic surveillance, attracted participants to enroll in such trials. Finally, elements of real-time data capture highlighted patient-participants’ everyday qualitative experiences, that included interactions with their clinical care team, events surrounding their outpatient cancer clinical trial appointments, and information shared at their appointments; and, the symptom burden issues that arose as patient-participants progressed in their trials. Patient-participants provided vivid descriptions of their CCT treatment, expectations and events surrounding CCT participation, their symptom experience, personal thoughts and feelings of the effect of CCT participation on their daily lives, and their relationships with family members, the CCT Team, and others during CCT participation.

Connie M. Ulrich
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