The Sensory Experience of Waiting for Parents of Children Awaiting Transplant: A Narrative Ethnography

Abstract

Despite the senses being a valuable source of knowledge, little research has explored the sensory process of medical experiences. This narrative ethnographic study investigated how the senses shaped parents’ experiences of waiting for their child to receive a solid organ, stem cell, or bone marrow transplant. Six parents from four different families primarily participated in sensory interviews as well as observations that explored the question: How do parents experience waiting using the five senses? Our narrative analysis suggested that parents’ bodies stored sense memories, and they re-experienced stories of waiting through the senses and ‘felt realities’. In addition, the senses transported families back to the emotional experience of waiting, which highlighted the longevity of waiting after receiving a transplant. We discuss how the senses provide important information about the body, waiting experiences, and the environmental contexts that mediate waiting. Findings contribute to theoretical and methodological work exploring how bodies are implicated in producing narratives.