Few caregivers could be more dedicated or cautious than a parent caring for a sick child. Yet recent research shows that even the most conscientious parents make repeated errors when giving medication to children with serious, chronic diseases, explains Robert Wood Johnson Foundation (RWJF) Physician Faculty Scholar (2007-2010) Kathleen E. Walsh, M.D. "In our studies, we not only found high rates of medication errors when children were cared for at home, we discovered that in 80 percent of cases, the physicians did not know about the errors. In many incidences, the parents were unaware they were making mistakes as well," Walsh said.
The research combined information from a national survey of the medical charts of adult and pediatric cancer patients, conducted in 2009 and a follow-up series of 83 home visits to families of children with cancer, sickle cell disease or seizure disorders. The findings from the home visit study were presented at the Pediatric Academic Society’s 2010 meeting. “After completing our medical chart reviews, we found that children with cancer had more than twice as many medication errors as adults, due entirely to mistakes made in administering medications at home,” said Walsh, who is also an assistant professor of Pediatrics at the University of Massachusetts Medical School. “Our follow-up study was the first to use home visits to look at the methods used by parents administering daily medication to children with these illnesses. The findings revealed that even parents with high levels of education commonly made errors when dealing with the highly complex medical regimens their children required.”
Linking Physician, Nurse & Caregiver
While Walsh’s research focused on the parent’s activities, a closer analysis of her data revealed that the nurses and physicians working with parents and other caregivers needed to give them a more extensive education about at-home care and learning to detect and avoid medication errors. “We did find that when parents used certain tools, such as calendars and alarms, it greatly reduced [by 45 percent] the number of errors,” Walsh explained. But for more challenging issues, Walsh and her team found that physicians and nurses needed to spend more time teaching parents how to handle problems such as changing dosages and managing a team of caregivers.
To begin with, “clear communication is very important for these parents because of the difficulty of the treatment regimens they are dealing with,” Walsh said. “With leukemia, for instance, the most common childhood cancer, the number of pills changes every day.”
To find solutions to these problems, Walsh and her team are testing new models of caregiver training and home care management, with the help of nurses. As an outgrowth of Walsh’s work as an RWJF scholar, she is now working with a grant from the Picker Institute to teach pediatric residents how to educate and support parents who medicate children at home.
“We are using things we have learned about what works best. Clinicians’ conversations need to be longer and more detailed, for example. They can also help parents with issues such as how to hand off care. With the help of nurse educators, we are developing a home medication calendar. We also suggest that nurses call and work with parents when dosages change and ask very detailed questions to help uncover any potential problems parents may have,” Walsh said. “We often coordinated our home visits so that they occurred while the visiting nurses were present and we found that they were already very involved in doing medication education.”
The problems physicians and nurses can help with may seem very simple to them, but may be quite a challenge for parents. “In some cases," Walsh points out, “a doctor will tell a parent how to give a medication, but it won’t work at home. Parents may be asked to cut a small pill, for instance, but if they don’t use a pill cutter, the pill will crumble.”
“Our focus for the future is on developing better methods of doctor/nurse/parent communication and interventions that will work at home,” Walsh says of her upcoming work. “We are also going to be looking at children with sickle cell who may not be taking their medication at all in some cases and examining how cultural factors may play a role in medication administration. We are trying to find ways to bridge cultural and other barriers that are preventing children from receiving the most effective care.”
The Robert Wood Johnson Foundation Physician Faculty Scholars program supports physicians in junior faculty positions who pursue valuable research projects and work to become academic leaders in their fields. Through mentoring, protected time and networking, young faculty members are given support at a critical point in their academic careers.