RESUMO
A semi-structured interview guide was used to interview 17 parents of children with cystic fibrosis identified through a shared care patient database at a London hospital to examine parents' medication-related roles and problems. Parents described their responsibilities in the home and the problems experienced, including adherence to regiments, involvement in decision-making, and relationships with the hospital teams and other healthcare professionals. The findings confirmed medication management as an integral part of the informal caring role. Many practical problems of ensuring the availability and administration of medication on a regular basis were described. Information gaps and problems with medication adherence increased the stress of providing effective care. The involvement of healthcare professionals across primary, secondary and tertiary care sectors in supporting parents in all aspects of medication management, including the development of strategies for transferring the responsibility for medication to their children, must be improved.
