Parents can’t give enough information, study says
August 1, 2000
Parents can’t give enough information, study says
Even if parents are there when a child with special needs comes to your ED, they might not know enough to help you save the child’s life, notes Carol Carraccio, MD, FAAP, professor of pediatrics at University of Maryland Hospital in Baltimore.
"Even the family members may not have a handle on what the problem is or an understanding of the disease process. That could clearly impact on the treatment the child receives," she says.
In one study, researchers interviewed 49 caretakers about their child’s chronic medical problem.1 "The results were concerning," reports Carraccio, the study’s principal investigator. Here are key findings:
• About half of caretakers were unable to give their child’s specific diagnosis. Of those, about half could provide a lay diagnosis, but the remaining half could only identify an organ system, with statements such as "my child has a heart problem," Carraccio says.
• Twenty-nine percent of caregivers could not provide an accurate list of medications the child was taking. "That is significant in the ED, because we have to worry about drug interactions," she explains. "It’s important to know what they are already on, so a drug doesn’t exacerbate the child’s condition."
• About a quarter of caregivers didn’t know the name or phone number of a specialist able to provide information about the child’s condition.
• None of the children in the group was wearing medical ID jewelry.
Parents can improve children’s care
The findings are only the tip of the iceberg, says Carraccio. "These were people compliant in coming to a subspecialty clinic setting, so it makes you very concerned about the group who didn’t come to [the] clinic," she notes. "This makes a valid case that we need something above and beyond just information from the parent to do our best to take care of children with special needs."
Even if parents are knowledgeable about the child’s problem, they might be unaware of rare emergency complications that might happen once or twice in a childhood, says Sacchetti. Here are some ways to work with parents of special-needs children:
o Encourage parents to set up a visit in your ED. Offer to meet with parents to discuss the emergency care of their child, suggests Sacchetti.
o Suggest ways for parents to improve ED care of special-needs children. Here are some ways that parents can help you ensure their children receive emergency care promptly, according to Sacchetti:
— Contact the police and prehospital care squad to let them know they have a child with special health care needs.
— Put a blue light outside so paramedics can find the house quickly.
— Keep an Emergency Information Form (EIF) on a shelf in the refrigerator with a ribbon around it, so it’s readily accessible if a baby sitter or relative is at home when paramedics arrive.
o Encourage parents to obtain medical ID jewelry. Physicians don’t recommend medical ID jewelry to parents as often as they should, says Carraccio. "We could do a better job of saying to families, This would be helpful for your child,’ and providing the number to call." (To obtain jewelry, see source box, p. 90.)
Parents might not realize the need for medical ID jewelry and might mistakenly believe ED staff will know what to do in every situation, says Carraccio.
o Create a continuum of care. At VNA of Rhode Island/Hasbro Children’s Hospital, the Max’s All Star Kids Program identifies children with multiple complex health and rehabilitative needs who require repeated services across the health care system, says Nancy Bowering, the program’s director. The program was developed to address parents’ concerns about getting consistent care for their children, she explains. "We assign a care coordinator to assist the family in obtaining quality services and resources to care for their child at home," she explains.
The program also affects care in the ED, where a "Frequent Fliers" file is created for each child discharged from the hospital. The file contains emergency medical information and common presenting problems and their management, says Bowering.
"Emergency care plans are developed in the pediatric intensive care unit upon discharge by the team of intensivists, nurses, and discharge planners," she explains. "The goal is to inform the ED about the child’s unique needs and care preferences."
Reference
1. Carraccio CL, Dettmer KS, duPont ML, et al. Family member knowledge of children’s medical problems: The need for universal application of an emergency data set. Pediatrics 1998; 102:367-370.
For more information about family members’ knowledge of children’s medical problems, contact:
• Nancy Bowering, VNA of Rhode Island/Hasbro Children’s Hospital, 593 Eddy St., Providence, RI 02903. Telephone: (401) 444-3201. Fax: (401) 444-7030. E-mail: [email protected].
• Carol Carraccio, MD, FAAP, University of Maryland Hospital, Department of Pediatrics, 22 S. Greene St., Room N5W56, Baltimore, MD 21201. Telephone: (410) 328-5213. Fax: (410) 328-0646. E-mail:
[email protected].
To obtain an application for medical identification jewelry, contact:
• MedicAlert Foundation, 2323 Colorado Ave., Turlock, CA 95382. Telephone: (800) 432-5378 or (209) 669-2436. Fax: (209) 669-2495. E-mail: [email protected]. Web: www.medicalert.org.
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