Collaborating with parents to improve patient care: lessons from a cardiac sedation nurse

collaborating with parents for pediatric health care

Anyone who’s a regular at a coffee shop can relate to this scene: you walk in, and the barista behind the counter notices you.  She waves, says your name, and you wave back.  By the time you get to the cash register, she’s already handing you your order — just the way you like it.

If your local coffee shop can prepare for your specific preferences, why can’t your health care team?

Often, the kinds of information not typically captured in a medical record are crucial to a patient’s experience. For example, if a child sucks his right thumb, his mother may tell the sedation nurse try to inserting the IV in his left arm first.  If a baby girl isn’t calmed by music but is mesmerized by a spinning toy, her father may want that toy in the room whenever she’s having an echocardiogram, so she sits still and the images are easier to interpret.

“Patients with chronic conditions return quite frequently to the same clinic for follow-up care and tests, and they shouldn’t have to repeat the same information each time,” says Brenda Brawn, RN, BSN, CCRN. “It’s not extraneous information; it can and should be incorporated into their plan of care.”

Brawn has been piloting a way to address this need in her work as a cardiac sedation nurse caring for pediatric heart transplant patients.

She developed a questionnaire with age and developmentally appropriate questions for kids and parents. The information captured can be as specific as a reaction to medication X or as broad as generally making the experience more comfortable. For example, some people like to do both echocardiograms and electrocardiograms(EKGs) while they’re still sleeping after the procedure for the biopsy. Others want to be awake for those tests and don’t like waking up to find out someone had been in the room with them, working on them without them knowing about it.

Patients and/ or parents fill out three sections: Pre-procedure, Post-procedure, and a more general section about likes and dislikes/ personality.

Examples of patient/parent provided info:
“Sometimes I get anxious about my EKG exam, so I like to touch the medical equipment, like your stethoscope.”
“I like strawberry yogurt to take my meds after the procedure.”
“I don’t like to be touched. I will let you know when I’ve had enough.”
“I like to have my echocardiogram and everything else done before the biopsy.”

An opportunity to improve communication

The questionnaires are kept on file, and the assigned nurse uses them to inform her care. So far, they’ve received positive feedback from nurses, patients and parents, who feel better knowing their input is valued.

Brawn was ultimately spurred to start the project by one particularly memorable experience with a patient who was about 11 years old. “After the sedation wore off, she immediately started screaming and was in a state like that for two hours.  Her mom looked at me and said, ‘This is exactly what happened last time.’ I thought, how did we let it happen again?”

The girl’s documentation, says Brawn, indicated that last time she “woke up irritable” but didn’t name the medication or describe the event in further detail. From that text, you would never know exactly what had happened.

“It wasn’t anyone’s fault,” says Brawn. “It wasn’t exactly a miscommunication, but something was amiss with the communication process.”

When the girl came in for her next appointment, Brawn noticed her name on the daily schedule and discussed her previous experience with anesthesia team.  The team was able to sedate her using other medications.

It worked wonderfully, Brawn says, “and at that moment I realized we as nurses have an opportunity to do better, to communicate all experiences for the best outcomes.”

A collaborative effort between parents and providers

Right now, Brawn’s questionnaire is in paper form, so parents can add information/update the form at each visit if needed. “It works because it’s portable and iterative,” she says, “but my ultimate goal is to create an app that parents can fill in up to a few days before the appointment.”

That way, nurses can look at the information in advance and plan care accordingly. Plus, “It eases anxiety for parents to be able to provide that information up front,” says Brawn. “It feels productive and it’s something they can do for their child before even getting to the appointment.”

Brawn is in talks with TrivoxHealth, a Boston Children’s based web application developer, to create the app, which will also collect clinician input.

“We need something interactive,” she explains. “And it has to be a collaborative effort from all of us. We need to be all involved with the plan of care, as well as the family.”

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