An ethnography of a children's renal unit: experiences of children and young people with long-term renal illness

This study explored the experience of long-term renal illness, including issues concerning compliance with treatment, from the perspectives of children and young people. Children and young people have difficulty complying with renal treatment; research in this area usually focuses on their compliance with a narrow range of behaviours: compliance with dialysis, tablet taking and dietary and fluid restrictions. Renal compliance studies are usually premised on the assumption that children will automatically comply with treatment and/or that blame for non-compliance rests with the child and family. The study, underpinned by a view of children as competent social agents, used ethnography to explore and describe the everyday experience of long-term renal illness. Ethnographic fieldwork - involving participant observation, informal interviews and the use of children's drawings - took place over 16 months in a hospital renal unit comprising an inpatient ward, a haemodialysis unit and an outpatient clinic. The primary participants were 13 children; 14 carers and 36 staff members also participated. Data were interrogated through descriptive and thematic forms of analysis. This study reveals participants' perspectives on the physical and social impact of renal treatment. It also provides a conceptualisation of life with long-term renal illness that highlights children's management of 'illness labour', their inhabitation 'renal geographical space', 'a renal body' and a 'renal social world'. These findings show how compliance with renal treatment involves particular embodied experiences that are hard for children to manage. Traditional views of compliance/non-compliance render children's embodied experience and their labour in managing dialysis, thirst and their difficulties with tablet taking irrelevant, whilst this study shows these as highly relevant to children. The conceptualisation of children's experience arising in this study provides a new way of considering the embodied experience of children with long-term renal illness.