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10 tips for doctors caring for families affected by Zika
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Families affected by the Zika virus often experience a mix of emotions, and health care providers must offer appropriate support, David J. Schonfeld, MD, FAAP, said during the Zika Virus and Your Eyes Webinar.
“Expectant parents and parents of a newborn child are usually excited about the possibilities for the future for the new child and family, but with this excitement there is also the concern that something might compromise the health and development of the child,” said Schonfeld, a developmental-behavioral pediatrician and director of the National Center for School Crisis and Bereavement.
This is a particular concern when the child is known to have or suspected of being infected with Zika virus, he said.
Schonfeld presented 10 key considerations for health care providers working with families affected by Zika.
1. Families may be guilty, angry, sad or concerned. It may be difficult for them to make even simple decisions and to concentrate.
“These worries and concerns may leave some families to avoid recommended screening, evaluation, monitoring and testing, as those may uncover confirmation of fears or introduce new things that may be more upsetting or worrisome,” Schonfeld said.
2. Your support helps families follow through. Many infants of mothers who test positive for Zika during pregnancy are not being tested after birth, he said.
“Your support will help families follow through with medical care,” he added.
3. Much is still unknown. There are many unanswered questions and limited information about the range of outcomes associated with fetal Zika virus infection, including the impact on vision, Schonfeld said. It can often be particularly difficult to accurately predict risk for an individual family.
“This uncertainty makes it hard for health care providers to provide accurate, participatory guidance or to answer critical questions to the satisfaction of families or even to the satisfaction of the health care team,” he said.
4. Pay attention to what you say. “When health care professionals don’t know what to say, they often don’t say much,” Schonfeld said.
By saying nothing, that can send a message to the family that you are unaware of their concerns, uninterested, unwilling or unable to be of support, he said. It leaves families alone to deal with their questions, concerns and worries.
While much is still unknown, information exists on other viral agents that affect and damage the central nervous system of fetuses, and this information may provide essential insight, Schonfeld added.
5. Your support matters. “Parents benefit from partnering with empathic and concerned health care providers who face the uncertainty together, with them,” Schonfeld said. “While you may not know all the answers, just knowing you are there to face the questions together, as they arrive and throughout the babies’ childhood, can be of enormous support to parents.”
6. Don’t say, “Everything will be OK.” It may be tempting to give blanket reassurance, but it is often not helpful for overall adjustment, Schonfeld said.
“Allow patients to own their feelings and emphasize that you are here to help. Say, ‘This is not your fault,’” he said.
Guilt is likely common in these parents and should be addressed.
7. Focus on the positive steps. Schonfeld said the health care provider should be realistic in his or her assessment but remind parents that help is there and families should seek every available avenue, such as early intervention enrollment. Supportive services do not need to be Zika-specific.
8. Zika will challenge parents’ ability. Some infants who are more severely impacted may be particularly challenging to parents. They may cry for weeks after birth, be difficult to feed and lead parents to doubt their ability to parent. These parents will need even more support, Schonfeld explained.
9. Watch out for later problems. Some infants exposed to Zika in utero but born without obvious birth defects may show later onset through slow growth of the head and developmental delay.
10. Guidance is available. “Part of the challenge in supporting families affected by Zika is not feeling sure what the right next steps are in management,” Schonfeld said.
Health care providers are not required to memorize everything about Zika; just know where to find the proper information.
For continuously updated guidance visit: CDC.gov/Zika. – by Abigail Sutton
Reference:
Anderko L, et al. Zika virus and your eyes [webinar]. October 18, 2017. https://cc.readytalk.com/cc/s/meetingArchive?eventId=s8z4xbhhsn2h. Accessed October 18, 2017.
Disclosure: Schonfeld reports no relevant financial disclosures.