Title : Caregiver burden of parents of young children with cystic fibrosis

Why is this important? Informal caregivers provide an important economic and social service in society which is likely to increase due to pressures on healthcare services. The number of, sometimes complicated, treatment schedules needed by children with CF and adherence to these schedules means a large burden of care is placed on their parents or caregivers. They also have to cope with uncertainty about the progression of their child’s condition, financial strain due to costs linked to caring for their child, as well as frequent clinic visits and hospitalisation. There is very little research that has examined how this burden of care impacts on the lives of parents and caregivers of young children with CF.