Experiences of parents of young people with diabetes using insulin pump therapy

BACKGROUND: National guidance on the use of insulin pump therapy in the management of type 1 diabetes in adults (currently under review) also applies to children and adolescents. However, access to this treatment relies on the availability of health professionals trained in the use of pumps with children and young people rather than on clinical need. AIM: To examine the experiences of parents of children and young people using insulin pump therapy treatment to treat their type 1 diabetes. METHOD: Parents of 44 children and young people aged one to 16 years identified from the databases of two support and advocacy groups responded to email or postal self-completion questionnaires. RESULTS: Percentage frequency and thematic analysis identified issues relating to: access of information about pumps from NHS sources; high initial refusal rates by diabetes teams for children wanting to use the treatment; distance travelled to access a pump-trained team; reasons for starting the treatment; choice; benefits; information and assistance needs once using the treatment; and parents' involvement in deciding their child's diabetes care plan. CONCLUSION: Generalisability is limited by the small scale of the study but these results suggest that in addition to improving glycaemic control, insulin pump therapy offers flexibility, choice and a better quality of life for children and their families.