Toolkit for Families of Children with Special Healthcare Needs - Hearing Loss
Tip 1: Communicate with your doctor about your baby’s screening process
“I remember going to the doctor’s office, and he didn’t even know that you could screen infants for hearing loss. I’m glad that there is information for physicians so that my doctor and I can be on the same page.” - Parent
What We Learned in this Project
• Over 50% of babies that “referred” after newborn hearing screening did not have their primary care provider correctly identified at the birth hospital.
• Without correct identification of the PCP, it was not possible to ensure that screen results could be sent to the physician responsible for follow-up.
• The attending physician in the nursery was sometimes incorrectly named as the PCP (your regular doctor) responsible for follow-up.
• Some families had not decided on a PCP for their infant by the time they left the birth hospital.
• When infants “refer” after newborn hearing screening, families don’t know what to expect next in terms of re-screening or diagnostic testing.
• For infants found to have a permanent hearing loss, families don’t know what to expect in terms of further tests, providers they need to consult with, or interventions available.
• The number of different professional disciplines involved in management of children with hearing loss is confusing for most families, and hard for them to keep track of whether they have received all the consultations they need.
What We Did
• Screeners asked families directly for the name of the PCP they were planning to follow-up with after discharge from the birth hospital.
• Correct PCP was documented, and a copy of the screen results faxed to the PCP
• Encouraged hospitals to consider the most effective ways to correctly document each infant’s PCP e.g. asking parents at time of registration for delivery if they have yet chosen a PCP for their infant.
Your Role as Parents - Questions to Ask Yourselves
Do you have a primary care physician already? If not, has your family chosen a doctor for check-ups, etc., for after you leave the hospital?
• Does your family have the name and contact numbers (phone, fax and mailing address) for your PCP (your doctor) before you leave the birth hospital?
• Does your family’s PCP know the results of your child’s screening?
• Make sure you get a copy of the screening results from the hospital in writing and that you understand the results. If you don’t know what terms like ‘refer’ ‘did not pass’ and/or ‘failed’ mean, ask someone!
• Identify your PCP (who is your child’s doctor?)
• Take a copy of your screening and/or diagnostic results with you to your primary care physician on your next visit
• Give your doctor more than one contact number where you can be reached.
• Let your doctor know what language you would like information in (spoken/written).
• Look to see if your state has a parent road map, like these examples, so you know what to do next
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