Kids Kidney Research

There are 13 children’s kidney units in the UK.  In each unit the care of children with long-term conditions is managed by groups of professionals (such as doctors, nurses, social workers, dieticians, clinical psychologists and pharmacists) known as multidisciplinary teams or MDTs.  Research tells us that children grow and develop better and are usually happier and healthier in their own homes rather than spending long periods in hospital.  To make this possible the Department of Health encourages MDTs, whenever possible, to teach parents to carry out health care at home.  For example parents might: give injections; feed their child through a tube that goes into their nose and down to their stomach, or use peritoneal dialysis to replace the work that damaged kidneys can no longer do (fluid is drained into the peritoneal cavity (in the abdomen), allowed to sit there for several hours whilst it absorbs waste products, and then drained out).

This means that as well as caring for and managing children’s conditions in hospital, professionals also train parents to share care-giving, visit the home to help parents get used to care-giving, and monitor the child’s condition and the outcome of parents’ care-giving during home visits and out-patient appointments.  No research has been done to investigate the ways professionals currently teach parents or the types of teaching approaches that work best in different situations.  This means that MDTs have no evidence to help them plan and carry out the parent-teaching aspect of their roles. We do know that whilst some parents manage care-giving very well, others find it difficult to learn about and cope with the relentless demands and may not always follow the recommended treatment plans. We also know that children’s health may suffer if they do not receive the treatment they need or if important clinical signs are not recognised and reported to professionals. If MDTs knew more about the types of teaching that work best for parents it would help them in future when planning care and supporting parents in the care-giving role.

We will survey the MDTs in all UK units to find out how many staff are in each team, what they each teach parents and how they do this.  Next we will hold MDT focus groups in each unit and will ask individuals to describe their parent-teaching role, what they think works best and why.  Then an experienced child health researcher will spend up to six months in one of the units. They will ask six sets of parents of recently referred children and the professionals caring for them, if they can listen to and watch some of the training.  If parents and professionals agree the researcher will observe training related conversations and record them using a digital recorder or by taking ‘field-notes’. They will be as unobtrusive as possible and sensitive to parents’, children’s and professionals’ wishes during this time. Everyone who takes part will be asked to provide signed consent. If they later change their mind, no-one will ask them to explain why and they will be reassured that it will not make any difference to their child’s health-care or their role in the organisation.

We will use recognised research methods to gather and analyse the data so that MDTs, universities who teach new professionals and policy makers can have confidence in the results. The researcher will only watch training if everyone involved agrees. All information collected will have peoples’ names removed. No-one but the researcher will know who said what and they will not tell anyone. Children diagnosed with kidney conditions in the future and their parents, MDTs and policy makers are likely to benefit from an improved understanding of the different teaching approaches in use during care-giving. The outcome will inform future research into family teaching in children’s kidney units.