Aims To discover the views of children with severe intestinal failure treated with intravenous nutrition from early life and who remained heavily dependent on treatment throughout childhood.
Methods Seven children ages 7 to 17 years (mean 13 years) were interviewed. The diagnoses were enteropathy in 3, extreme short gut in 1, complex (associated mucosal inflammation and dysmotitlity) in 2, and intestinal pseudo-obstruction in 1. They were treated with intravenous nutrition overnight at home that was administered by trained parents using the simplest possible system. The children were individually questioned about their lifestyle and health. Transcripts were analysed using interpretive phenomenological analysis.
Results Children coped well with life with intravenous nutrition (apart from septicaemia in 2 cases), but were troubled when complications of the underlying disease persisted (e.g., nocturnal disturbance, stool frequency, abdominal pain). Children were aware that life was restricted (e.g., fewer sleepovers with friends, fewer late nights out). There was a high level of family functioning. Older children wished to take care of themselves. The burdens of life with intravenous nutrition appear to be less significant for these children than living with the effects of chronic illness. There was resilience and acceptance in the face of illness-related demands.
Conclusions This study has found that despite the problems they may face, it is possible for children fed intravenously at home to develop a level of resilience, maintain a positive outlook, and cope well with illness-related demands even when they have had virtually lifelong severe intestinal failure. Families can continue to function well.