2.6 Communicating with Parents

Key points

  • Public health surveillance is not meant to provide clinical care recommendations or guidance, and it is inappropriate for surveillance staff to communicate diagnoses, prognoses or clinical guidance to parents or other family members. Only the family’s primary health-care provider can communicate on clinical issues. However, it is important for surveillance staff to understand that having a child with a congenital anomaly is a very sensitive issue and it is essential to protect confidentiality.
  • Only health-care providers who have been appropriately trained should communicate the diagnosis and prognosis of a congenital anomaly to parents.
  • For more information about this topic, please refer to Appendix F of WHO/CDC/ICBDSR Birth defects surveillance: a manual for programme managers (4)

Parental involvement

What are some examples of ways in which parents can be involved in the surveillance programme?

Possible responses:

  • Parents can be effective advocates of the surveillance programme and help create and maintain interest among government officials and others, on the importance of having a congenital anomalies surveillance programme.
  • Parents can be advocates to help implement a prevention strategy when one exists (e.g. folic acid).

Parents can also help advocate for new services or improvement of current services for children born with congenital anomalies.