Smarter Ways To Teach Family Members Complex Tasks Upon Discharge


By Laura Landro

As hospitals send patients home after shorter stays and many patients live with multiple chronic diseases, more families are taking on complicated medical tasks. That includes giving injections, changing surgical dressings and operating special medical equipment, often with little instruction.

An estimated 43.5 million adults provide care at home for a chronically ill, disabled or elderly relative, according to a 2015 report. Now, a new push is under way to train family caregivers in skills once only provided by medical professionals in hospitals and nursing homes.

Since 2013, 31 states and territories, including New Jersey and Oklahoma, have enacted laws that require hospitals to notify a designated caregiver before a patient is discharged and provide them the opportunity to ask questions about medical and nursing tasks the patient will need at home. Members of a new Home Alone Alliance, including the Family Caregiver Alliance, are developing free caregiver training materials, including online courses and video tutorials.

“Families provide the bulk of the care to our aging population in the home, and many caregivers struggle with the nursing aspects of care, such as managing medications and complex wound care,” says Heather M. Young, dean of the Betty Irene Moore School of Nursing at University of California, Davis. “While intimidating, it is well within their abilities with the right tools and training.”

The UC Davis nursing school has created a series of online how-to videos for family caregivers. Researchers found that almost half of family caregivers performed medical or nursing tasks. Three out of four of those were managing medications, including administering intravenous fluids and injections.

Most caregivers told the researchers they received little or no training to perform those tasks. While insurers pay for some home health-care services, they are typically limited to a short period after discharge. Nearly 70% of patients had no home visit from a health-care professional after a hospital discharge.

Hospitals do provide family members with instructions at discharge and during outpatient visits. For example, the advanced wound care center at Hackensack University Medical Center in New Jersey provides patients and their caregivers with instructions on dressings and care. Its geriatric center recently hosted a seminar on caring for the elderly.

But even when encouraged to ask questions, family members “often don’t know what they don’t know” until they get home and have to perform a medical task, says Susan Reinhard.

For example, if family members have to administer medicated eye drops, they may not realize it is important not to splash drops directly in the center of the eyeball, which can be painful and cause patients to blink most of the medication away. The new videos aim to provide instructions they can watch at home whenever they need help with a new task or a refresher course, she says.

Heather Bennetts, who lives in Fort Collins, Colo., and her husband Steven care for their disabled 14-year old daughter, Emma, at home. When Emma was born, the hospital provided syringes that Ms. Bennetts had to hold by hand to drip-feed the baby. It was time-consuming and hard to manage.

After a couple of months, Ms. Bennetts asked a medical-equipment provider if there was a better way. She learned that she could ask for a food pump and tube by prescription. “I didn’t know they existed,” she says.

To master injections, work equipment and maintain a feeding tube for her daughter, Ms. Bennetts took a phlebotomy course and a semester-long certified nurse assistant course at a local community college, as well as pediatric and adult CPR and first-aid classes. She also subscribed to nursing magazines.

The nursing skills came in handy when Ms. Bennetts’s mother-in-law, 80-year-old Patricia O’Connor, was diagnosed with Alzheimer’s disease. She now lives with the Bennettses during the week and with her daughter Julie Cila on weekends. Ms. Cila, who works in human resources, says she had no medical training but learned as she went along. At first she gave her mother water and pills at the same time, but figured out not to when her mother would dump the pills into the water.

Ms. Bennetts says her own experience made her realize how difficult it was for some families to not only afford medical equipment and supplies, but to pick the most helpful devices and master their use. Ten years ago, with seed money from her grandmother Lillian Goddard, she started a nonprofit, GoodHealthwill, which accepts donations of medical equipment and health-care supplies and sells them at sharply discounted rates at three Colorado locations.

GoodHealthwill has a part-time respiratory therapist on staff to help clients learn how to use portable oxygen equipment, nebulizers and other tools. And it is working with Colorado State University’s physical and occupational therapy department on a program for students to help families choose equipment and learn about proper usage.

Families may be intimidated by things like caring for open wounds and incisions and using tubes. “Everyone can do this. You just have to get past the squeamish factor,” Ms. Bennetts says. “After you’ve threaded a nasal tube down someone’s nose once, it’s all about confidence and getting past that point.” She has occasionally inadvertently hurt her daughter or mother-in-law while taking care of them, but says caregivers can learn quickly from mistakes.

The Family Caregiver Alliance is developing a series of tipsheets on medication management at home. It’s also creating a digital caregiver learning center, where families will be able to take online classes and sign up for fact sheets addressing their specific needs.

Constance Adamopoulos, who runs a San Francisco-area event-planning business, cared for her uncle and elderly mother, now both deceased, over a period of several years when she also had a newborn son and her marriage ended. She worked with the Family Caregiver Alliance to produce videos for its YouTube channel, featuring herself and her uncle, Jimmy Johnson, to demonstrate how to help someone get out of bed, get them in and out of a car and give a shower using a special shower seat.

Ms. Adamopoulos says she had to learn those skills without any help. Sometimes both she and her uncle fell while she was trying to lift or shower him—including while shooting the videos.

“You do what needs to be done in that moment the best way you can,” says Ms. Adamopoulos, who is now helping to care for a friend with advanced cancer.


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