An Exploration of How Parents Did Waiting for Their Child's Transplant: Inpatient, Outpatient, and Home Space-Times

Current evidence shows that waiting for a child's solid organ, stem cell, or bone marrow transplant can cause social, emotional, and psychological suffering for children and their families. Despite waiting being a central theme, little research has investigated what families do while they are waiting in hospital and home settings and what daily life looks like in these contexts. This narrative ethnographic study explored what waiting may look like for parents of children waiting to receive a solid organ, stem cell, or bone marrow transplant drawing on the notion of space-time. Six parents from four different families participated in interviews and observations that explored the questions: How do parents wait on a daily basis and what does waiting look like in the hospital and home? Our narrative analysis suggested that the structure, rhythms, and flow were complex and diverse in the hospital and home space-time. Inpatient space-time could afford parents comfort by having expectations managed, while unpredictability of outpatient space-time caused immense stress. Waiting at home was a paradox in that it could be busy, monotonous, and isolating. Findings contribute to conceptual and practical work exploring how parents do waiting for their child's transplant on a daily basis and how they can be supported when they enter into unfamiliar illness narratives.