On the Front Lines: Meaningfully Connecting with Caregiver Participants to Mitigate Moral Distress among Clinical Research Staff

ABSTRACT

Background/Purpose: The COVID-19 pandemic exacerbated moral distress among psycho-oncology clinical research coordinators (CRCs). The current mental health crisis and lack of professional resources, paired with the intensity of CRC-participant communication and supportive nature of CRCs' roles on psychosocial trials, often evoke feelings of powerlessness and guilt among CRCs. However, CRC-participant communication (e.g., consent discussions, qualitative interviews) can also cultivate meaning and purpose for CRCs when vulnerable populations (e.g., cancer caregivers) share their gratitude for clinical trials and the efforts of the research team. This enhanced meaning may alleviate feelings of moral distress. The purpose of this presentation is to examine caregiver participants' appreciation and gratitude for research and discuss the potential avenues for reducing moral distress among CRCs. Method(s) This study was part of a larger RCT of Meaning-Centered Psychotherapy delivered to 60 adult caregivers of patients with Glioblastoma Multiforme who scored > 4 on the Distress Thermometer. A subset of 9 caregivers completed qualitative interviews with a CRC providing feedback on the trial, including perceptions of the initial approach process, which were transcribed and analyzed using an inductive thematic analytic approach. Result(s) All caregivers appreciated being approached for the trial, were grateful for the support CRCs offered, and the opportunity to help other caregivers. Additionally, caregivers shared the belief that psychosocial trials and resources should be offered to all caregivers at the time of diagnosis. This feedback enhances purpose among CRCs and serves as a reminder that their efforts produce meaningful change, which may reduce moral distress. Conclusions and Implications Caregivers were grateful for the opportunity to participate in research and appreciated the efforts of the CRC. CRCs are uniquely positioned to be gateways for caregivers to receive needed support and acknowledgement which subsequently bolsters meaning and mitigates moral distress. Further research is needed to explore the relationship between moral distress and meaning among research staff.