2.6 Communicating with Parents
It is important to remember that abstractors – those individuals who will be extracting information from hospital logs or medical records for the identification and classification of congenital anomalies – should not give information to parents about a diagnosis or services as these are usually done by a health-care provider. The topic on communicating with parents is included in this manual as a reminder to all programme staff that every identified “case” means that family members might have to cope with the death or disability of a child. Certified health-care providers – those doctors, nurses and midwives who have direct patient care responsibilities and are working as part of the surveillance programme – will benefit from receiving training on how to communicate sensitive information appropriately. Grieving parents might not fully comprehend a complicated diagnosis; therefore, it could be helpful to provide parents with written information about the diagnosis, along with details of available organizations, support groups, bereavement services and genetic counselling services. Please refer to Appendix F for suggestions on how health-care providers can communicate to families information about a diagnosis of a congenital anomaly.