Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials

Abstract

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.

Facilitators and Barriers to Older Adult Participation in Cancer Trials: A Qualitative Study Exploring Patient-Caregiver Dyad Congruence

“…Physician discussion and encouragement are strong influencing factors from both the patient's and caregiver's perspectives. [45][46][47][48][49] However, physicians often do not offer older patients a clinical trial because of concerns for patient age and comorbidities. [9][10][11][12] Compared with their younger counterparts, older adults are less likely to be offered a clinical trial by a physician but as willing to participate if offered one.…”

The many “costs” of transportation: Examining what cancer caregivers experience as transportation obstacles

“… 22 One qualitative study found that while caregivers wanted patients to receive the best care possible burdens associated with clinical trial participation remain unaddressed, including traveling and scheduling appoints, suggesting that caregiver perceptions of burden are important factors in care planning and decision making. 23 In a study of community health navigators transportation was identified as a topic for which they provide assistance but was not a priority for the majority of clients. 24 Taken together these results suggest that the definition (barrier or burden) and context (patient or caregiver) for which transportation is viewed is critical.…”

Rhetoric of research: a call for renaming the clinical research partnership

“…It's about two-and-a-half hours-'[Spouse/Caregiver, CCT Study, unpublished transcript] Some research suggests that caregivers, too, suffer emotional and physical burdens and moral distress when their loved one participates in research. 9 In creating a more inclusive and equitable research enterprise, broader public engagement must also include caregivers as they are in a position to bridge gaps. Caregivers are often tasked with monitoring symptoms, addressing immediate research-related concerns and communicating with front-line research coordinators and principal investigators on necessary supports-both for the patient and themselves as they travel through the often-daunting research process together.…”