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Making care safer for sick kids at home

Amy Louise Billett, MD
August 27, 2019

Every day, millions of parents measure medications, assess symptoms, or even care for central lines for their sick or disabled children at home. A safety expert argues that hospitals can — and must — prepare them better.

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A young woman demonstrates her central line care skills in a training program for parents and teenage patients.
A young woman demonstrates her central line care skills in a training program for parents and teenage patients.
Sam Ogden, Dana-Farber/Boston Children’s

Editor’s note: The opinions expressed by the author do not necessarily reflect the opinions of the AAMC or its members.

Several years ago, a worried mother called the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for help. Her 4-year-old son, whom my colleagues were treating for cancer, was showing worrisome signs, including unsteadiness and irritability. Any parent in such a situation might have been unnerved, but she bore an additional weight: a caregiver had administered ten times the correct dose of a certain medication. The boy needed to be hospitalized, but thankfully, he recovered well. Then, within a few months, two more of our patients experienced similar overdoses at home. Though they also recovered, we were shaken by the many possible problems with medications and other forms of care that seriously ill children receive at home.

An estimated 5.6 million youth in the United States with disabilities or chronic conditions such as cancer, diabetes, and developmental delays receive health care at home. In fact, parents of such children spend an average of 5 hours per week providing care beyond what other children generally need — a nationwide total of 1.5 billion hours per year.

The difficult reality is that parents and others who care for these children at home often must act like a multidisciplinary health care team.

An estimated 5.6 million youth in the United States with disabilities or chronic conditions such as cancer, diabetes, and developmental delays receive health care at home.

Caregivers may administer many medications, each with different and potentially confusing dosing schedules (three times a day, three times a week, once a day for three days). They also routinely assess the seriousness of symptoms and may determine whether to provide pain medication and how much. Sometimes, they need to spend months or years caring for a child’s central line, a semi-permanent IV with an end outside the body. That daily responsibility can be particularly frightening because imperfect line care can lead to central line associated bloodstream infections (CLABSIs) that can be dangerous and even deadly.

Of course, patient education is a standard part of the discharge process from hospitals, emergency departments, and day surgery centers, and few people leave without pages of instructions and information.

However, there is a real difference between passive education and active learning. We health care professionals have a responsibility to help caregivers achieve deep, meaningful learning so they can tend to sick or disabled children competently and confidently. To accomplish this goal, we need to devote the same attention that we have applied to improving hospital safety to promoting the safety of patients in their own homes.

At Dana-Farber/Boston Children’s, we have been working since 2015 to determine how to ensure that parents and other caregivers learn how to best provide care for children at home. We started with central lines, and we set out to create a learning curriculum that would help parents achieve the same high-quality line care that our nurses do.

We need to devote the same attention that we have applied to improving hospital safety to promoting the safety of patients in their own homes.

We began by assembling a wide-ranging team of experts: physicians, inpatient and outpatient nurses, infection preventionists, quality improvement experts, a “checklist engineer,” and community nurses who provide care in patients’ homes. But key to all our successes have been those with a unique expertise: parents who know well what happens in their own homes.

Ultimately, we put together a multipart program that provided a broad range of educational supports and learning opportunities.

We created videos to clearly demonstrate the different components of line care, including exactly how and when to wash one's hands. Nurses expert in line care began leading a series of hands-on sessions that allowed parents — or teens doing their own care — to practice the complicated care regimen on special mannequins.

In addition, we revised our existing educational handouts to ensure that they all provided exactly the same instructions, never used different words for the same things, and included both simple illustrations and clear language. We also created several new learning aids for use at home, including a self-standing flip chart with detailed illustrations and directions covering all aspects of line care. And we got these materials translated into Spanish and Arabic.

As we developed and revised our curriculum, we sought feedback from many staff members and caregivers. Was the illustration clear? Did the words make sense? Would the flip chart fit on the surface used at home? We also developed a standardized assessment of caregiver competence for each of the different parts of line care and regularly recorded the results in patients’ electronic health records, where they could be used for ongoing support.

As one mother said, “It’s terrifying knowing your child is so susceptible to bacteria and infection and you’re doing central line care in the house, with kids and the dog running around.”

Through the process, we found that one of our most important moves was implementing the “teach back” method. Parents and adolescent patients who cared for their lines themselves were asked to show line-care competence to an expert nurse. Teach backs started before discharge, continued as an outpatient soon afterwards, and recurred every three months to ensure that skills were maintained. Extra coaching sessions were added whenever needed.

We have experienced significant success with our learning curriculum. Within 8 months, nearly all of our patients’ caregivers participated in the program, and more than 90% were proficient in the key skill of flushing a central line. In addition our infection rates have decreased. We estimate that we have prevented 25 infections, eliminated 148 hospital days, and saved more than $850,000 in health care costs in the past three years.

But we’ve also seen a wonderful, unanticipated benefit: greater parent confidence in their ability to provide care. In fact, our research found that parent worry about line care decreased significantly following training, a major success given the terrible stress caregivers can face.

As one mother said, “It’s terrifying knowing your child is so susceptible to bacteria and infection and you’re doing central line care in the house, with kids and the dog running around. I needed to know how to do it, and I needed to know I could do it.”

Given our success with CLABSI prevention, we decided to roll out a similar program to address the problem of home medication safety. We have created videos, started medication teach backs, and begun handing out practice kits for measuring liquid medications, which can be especially tough given sometimes tiny doses.

Fortunately, we are not alone in our successes. University of California, Los Angeles, for example, implemented a caregiver education program using such tools as teach back and action plans based on caregivers’ concerns. That effort led to 20% fewer hospitalizations among children with complex conditions.

My deep hope is that every center that treats children with complex conditions will establish highly effective caregiver learning programs. Anyone who is interested can start by accessing publicly available tools such as our videos and educational sheets. And any center interested in ambulatory CLABSI prevention or home medication safety should feel free to contact us. We certainly have found it extremely satisfying work that not only improves health outcomes but decreases health care costs and reduces the sometimes devastating burden on families.

It is time for the health care system to embrace the challenge of improving the safety and quality of at-home care of children with complex and chronic conditions. These children ought to enjoy the best health possible, living with their families, going to school, and sleeping in their own beds with as little disruption in their young lives as we can help them achieve.

Amy Louise Billett, MD, is an associate professor of pediatrics at Harvard Medical School and director of Safety and Quality at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. She would like to acknowledge Margaret Brill-Conway, RN; Marie Denise Desrochers, RN; Riley Mahan, BS; Chris I. Wong, MD, MPH; and the many patients, parents, and other staff at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center who made this parent-training program possible.

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