Key Points
Question
What are the experiences of patient-participants when they leave a cancer clinical trial?
Findings
In this qualitative study in which 20 patients with cancer who withdrew or were withdrawn from clinical trials were interviewed, 5 themes emerged: posttrial prognostic awareness, goals of care discussions, emotional coping, burden of adverse effects, and professional trust and support.
Meaning
Clinical trial exit is a critical time for engaging patients and families, who have invested their time and hopes in the trial, in meaningful dialogue about posttrial care needs; ongoing research is needed to inform responsible transitions from clinical trials and ensure ethical treatment of patient-participants.
Medical-legal-social science research has documented that nongenital and/or anogenital injuries play a significant role throughout the criminal justice system from victims reporting to judges determining the length of a sentence. What remains an open question is whether the documentation of anogenital injury influences women's willingness to engage in the criminal justice system. A sample of women age 21 years and older residing in an urban area were asked about willingness to report to police, file charges, and work with the courts to prosecute after rape. Questions were framed with a qualifying statement about the forensic examination being able to detect injury related to forced sexual intercourse. Results show that women had a high willingness to act if the examination could detect anogenital injury and women with and without a history of forced sexual intercourse had significant differences in their responses to these questions. Implications for health care, criminal justice system, and future research are discussed.
Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers’ perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted. Three major themes emerged. The benefits of research participation focused on enhancing the potential for saving a loved one’s life, improving quality of life, and holding altruistic intentions. The burden of research participation emphasized a loved one’s suffering as well as physical, emotional, logistical, and financial burden to caregivers. Caregiver moral distress highlighted distressing ethical encounters, such as making decisions on research participation and navigating suboptimal care. Understanding caregiver perceptions is an important step in designing future CCTs that minimize burdens and maximize patient and caregiver health and family-centered care.
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