2.5 Communicating with Parents

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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

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.
References
  1. World Health Organization. Congenital anomalies. Fact sheet No 370. October 2012 (http://www.who.int/mediacentre/factsheets/fs370/en/index.htmlexternal icon , accessed 29 April 2015).
  2. Resolution WHA63.17. Birth defects. In: Sixty-third World Health Assembly, Geneva,17–21 May 2010. Geneva: World Health Organization; 2010 (http://apps.who.int/gb/ebwha/pdf_files/WHA63/A63_R17-en.pdfexternal icon, accessed 29 April 2015).
  3. International statistical classification of diseases and related health problems, 10th revision. Geneva: World Health organization; 2015 (http://apps.who.int/classifications/icd10/browse/2015/enexternal icon , accessed 24 February 2015).
  4. World Health Organization, National Center on Birth Defects and Developmental Disabilities from the United States Centers for Disease Control and Prevention (CDC), International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Birth defects surveillance: a manual for programme managers. Geneva: World Health Organization; 2014 (https://www.cdc.gov/ncbddd/birthdefectscount/documents/bd-surveillance-manual.pdf, accessed 10 February 2015).
  5. World Health Organization, National Center on Birth Defects and Developmental Disabilities from the United States Centers for Disease Control and Prevention(CDC), International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Birth defects surveillance: atlas of selected congenital anomalies. Geneva: World Health Organization; 2014 (http://apps.who.int/iris/bitstream/10665/127941/1/9789241564762_eng.pdf?ua=1pdf iconexternal icon , accessed 10 February 2015).
  6. CDC Foundation. What is public health? (http://www.cdcfoundation.org/content/what-public-healthexternal icon , accessed 24 February 2015).
Page last reviewed: November 1, 2019
Content source: Division of Birth Defects and Developmental Disabilities, NCBDDD, Centers for Disease Control and Prevention