Making Respite Services Part of Routine Care at St. Jude's

What is that saying about how being a caregiver is one of the hardest and most thankless roles a person can ever fill?

There is no such saying. No caregiver would openly admit as much.

And that's a problem.

Caregivers—no matter the age of the person they're caring for—lead quiet, almost monastic lives of selflessness and self-denial, devoting all the time and energy they can spare to their loved one. They learn to neglect their own needs, even at the cost of their own health. They need a break.

One hospital decided to do something about that.

Helping Hands

St. Jude's Children's Research Hospital has forged a reputation for developing treatments for sick and difficult-to-treat children. But recently it launched a program aimed at the parents and caregivers of their patients called Helping Hands. The short of it is that this program was designed to give caregivers a break. And little surprise it has been an enormous success.

According to a report published in the Journal of Pediatric Oncology Nursing, Helping Hands is believed to be "the first hospital-based respite care program of its kind for pediatric cancer patients and their siblings."

The long of it is that it a began as a pilot project available once a week between 9-4 pm. Trained volunteers would give parents up to two hours to do whatever they needed to do—whether it was errands or even celebrating a wedding anniversary.

Today the program runs seven days a week for as many as 12 hours per day and has an astonishing 50 volunteers.

Respite as Routine

"Our goal is to have a Helping Hands volunteer available 9 a.m. to 9 p.m. seven days a week," said Kathryn Berry Carter, St. Jude Volunteer Services director and the study’s lead and corresponding author. According to Carter, the keys to the success of the program are accessibility and convenience. Therefore, volunteers wear a 'communication device' so that they can be reached to arrange for respite services on short notice.

Study co-author Belinda Mandrell, Ph.D., St. Jude Nursing Research, hopes their report will inspire other hospitals to create and offer such a this service. "This is an example of a St. Jude patient care services program that adds to the professional literature in this field," she said.

"We want to make respite care a routine part of clinical care rather than crisis care," added Carter. "In the context of family-centered care, it is important that health care providers communicate to caregivers the importance of taking care of themselves."