Using Ethnography to Build Knowledge: Informal Caregivers Providing Care at the End-of-Life

Abstract

(41st Biennial Convention) Research into issues related to end-of-life care has grown exponentially over the past decade, yet the science under-girding practice remains under developed. Several national consensus panels have addressed the development of strategic initiatives to advance the state of the science, confirming the need for research into the experiences of informal caregivers providing end-of-life care and the derivation of theory-driven, research-based interventions to meet their needs. To help address this gap, ethnographic methods were used to understand the influences of the prevailing values and beliefs, or the culture of care, on formal caregivers' recognition and response to informal caregivers' feelings of distress across three distinct end-of-life trajectories. As direct observation is integral to ethnography, researchers were fully immersed in the clinic setting for twelve months. Starting with event focused clinic visits, formal caregivers were observed interacting with informal caregivers. The observational lens was then expanded to capture the culture of care or overarching clinic milieu. Supplemented by document review, key events and key informants were sought to fill in gaps and promote a full understanding of the culture of care of the clinic setting. Findings from these observations identified five interdependent, co-occurring spheres of influence which included: Context of the Illness, Role of the Formal Caregiver, Perceptions of the Patient System, Focus of the Visit, and Continuum of Care Across the Trajectory. Having completed the first phase of the project, the next step is to compare and contrast the informal caregivers' experiences of uncertainty over the course of 12 months of end-of-life care with the formal caregivers' recognition and response to caregiver distress during their interactions. The final step is to translate the findings from the completed project into a theory-guided, research-based assessment and intervention protocol to support distressed informal caregivers across the end-of-life care trajectory.