Recurrent life-threatening sepsis in intestinal failure: transplantation or foster care?

Abstract

Parenteral nutrition has transformed the outlook for patients with intestinal failure, but is associated with serious long-term complications, including catheter-related blood stream infection, liver disease and loss of venous access. Risks can be significantly reduced by strict adherence to management regimens, such as catheter-care protocols, but intestinal transplantation is indicated when complications threaten survival. The responsibility of home parenteral nutrition as an alternative to long-term hospitalisation is welcomed by many parents, but represents a huge burden of care that sometimes proves beyond their capacity. We report two children with recurrent life-threatening central venous catheter infections who were removed from the intestinal transplant list following virtual cessation of infective episodes after going into foster care. These cases raise important issues about the level of family support offered, the role of non-compliance with treatment routines in relation to risk of complications, and how this should be assessed and monitored.

Social circumstances and medical complications in children with intestinal failure

“…In this study the families generally coped extraordinarily well with the demands placed on them, but the true cost to parents and their children is often unrecognised and in some cases this leads to disastrous treatment failure because parents have simply been overburdened 30. Lack of compliance is hardly ever the only factor, and compliance is not simply a ‘patient problem’; health providers also have a major role to play in the way they improve access to advice and support.…”

“…This compares with the overall rate of weaning from PN in children with short bowel syndrome of 75–90% in healthcare systems with established nutritional care teams 29. Given the unrelenting demands of providing complex nursing care while also carrying out normal parental roles, it is not surprising that some families are overwhelmed and exhausted 30. The care of children with complex conditions who require comprehensive nursing care often involving medical technology has increasingly shifted from hospital to home in the past 20 years.…”

Paediatric Home Parenteral Nutrition in the Czech Republic and Its Development: Multicentre Retrospective Study 1995-2011

“…It is known that the education and experience [41] of the parents are of importance and that a change in practice can make a difference [42,43]. In our group, 2 of the 14 patients with CRBSI accounted for more than one third of all infection episodes.…”

What is the right approach to infection prevention and control for children living at home with invasive devices?

“…Families develop complex working relationships with the professionals involved in the care of their child, and maintaining effective relationships is critical for families to feel supported in their role as primary carer for the child and their device. (46) As the number of children receiving complex care in the community expands, it is increasingly important to recognise the realities of care provision by families, and complex nature of the interaction between families, professionals, and the everyday environments in which care is provided; the challenges that families face; the resources and resilience that they bring to meet these challenges; and what kind of support is best suited to meeting their needs. It is not sufficient to approach the problem of IPC in children with invasive devices solely from the perspective of healthcare workers.…”