Parent-held shared care records: bridging the communication gaps

Abstract
Specialist centres provide excellent treatment and expert care, but the best interests of children may not be served if they must always attend a hospital far from home. Systems of shared care have been developed to offer care nearer the family home whenever possible. Parent-held shared care records were introduced at a paediatric haematology/oncology centre in response to issues raised by parents and professionals concerning the management of shared care. These were set up to facilitate communication, teamwork and family involvement. Consultation took place within the multidisciplinary team to ensure that the design of the records met the needs of each group. During a multidisciplinary study day the records were introduced to professionals from shared care hospitals. Before formally incorporating these records into regular clinical practice they were piloted with a group of families. The records have become an accepted part of the service provided for family and professional partners in shared care. Formal evaluation of this innovation is currently taking place.

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