Balancing dual roles in end-of-life research

Abstract

Ethical and practical issues are sure to arise from the majority of research studies done with palliative populations. Whether it is feeling opportunistic, being emotionally available, or struggling with witnessing a gap in service and needs of the participants receiving care, nurses involved in research find a way to balance both roles to meet the needs of the participants as well as the study (McIlfatrick, Sullivan, & McKenna, 2006). This paper highlights some of the practical and ethical issues that arise when frontline nurses also take on the role of research assistant for studies with palliative populations. Specifically, the authors highlight their personal experiences based on their research assistant work on a study examining family caregiver coping in end-of-life cancer care. The authors discuss the “balancing act” of taking on these dual roles and offer recommendations on how to be with and approach people when doing research at the end of life using a framework based on Swanson’s Theory of Caring (1991).