Partnerships between families and professionals: Managing risks of infection in children with invasive devices

Children with an invasive device are at risk of serious infection and its complications. Though studies suggest that strict adherence to infection prevention and control (IPC) practices can reduce device-related infections, this research has mainly taken place in hospital settings where care is performed by trained professionals in dedicated environments. Little is known about device care for the growing number of children with invasive devices who live at home, where the care of the device is undertaken by a complex network of family members and professionals across multiple settings. This study seeks to explore how device care is performed outside formal healthcare settings, and investigates how families and professionals work together. Semi-structured interviews were carried out with families and professionals who were recruited using a purposive sampling method. Eighteen mothers, four fathers, and eleven children participated in family interviews; 20 interviews were undertaken with professionals from a range of disciplines. Data analysis was based on the constant comparative method. Analysis revealed that families are engaged in a complex process of trade-offs as they try to balance the demands of device care while maintaining a normal life for their family. Though avoiding infection is a key priority for families, it is not the only one: maintaining a sense of “normal life” is another goal. Maintaining compliance with IPC practices requires much work and expertise on the part of families, yet this may not be fully recognised by professionals. Some professionals recognised the expertise of families, and worked with them to achieve a shared goal of maintaining IPC in the context of everyday life – a form of co-production. Co-production offers a model for children, families and professionals to work together in a way that makes best use of their expertise and skills, responding to individual families’ priorities, and tailored to their particular circumstances.