Innovative Respite Care Program Gives Parents Outlet During Child’s Cancer Treatment

Innovative respite care program gives parents outlet during child’s cancer treatment

The Helping Hands initiative at St. Jude Children’s Research Hospital provides breaks to caregivers, underscoring the hospital’s commitment to family-centered care and serves as model program to other institutions

Newswise — (MEMPHIS, Tenn. – March 13, 2013) A pioneering program at St. Jude Children’s Research Hospital is making it easier for parents to duck out for a meal, meet privately with their child’s doctor, get away to mark a special occasion like a wedding anniversary or to simply recharge.

The program, called Helping Hands, is believed to be the first hospital-based respite care program of its kind for pediatric cancer patients and their siblings. The program is designed to expand access to such services by simplifying scheduling and making the program easy to use. The approach offers a model other children’s hospitals or pediatric hospital units can follow to incorporate respite services into clinical care for young patients with special health care needs, according to a report recently published in the Journal of Pediatric Oncology Nursing.

In its first 14 months, specially trained Helping Hands volunteers provided caregivers with up to a two-hour break on 634 different occasions. The program began as a pilot project available each Tuesday from 9 a.m. to 4 p.m. Today, Helping Hands has grown to include 50 volunteers and operates seven days a week for up to 12 hours a day serving both inpatient and outpatient families. “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.

Accessibility and convenience are important elements of the program’s success, Berry Carter said. Volunteers wear a communication device so St. Jude staff can contact them directly to arrange respite services or suggest that a volunteer check in with a parent. “We want to make respite care a routine part of clinical care rather than crisis care,” she said. “In the context of family-centered care, it is important that health care providers communicate to caregivers the importance of taking care of themselves.”

Belinda Mandrell, Ph.D., St. Jude Nursing Research, and the study’s coauthor, said she hopes the report will encourage other hospitals to offer 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.

Evidence suggests these programs provide important support and relief to parents and other caregivers. “In the past we struggled to fill requests involving parents and caregivers who needed someone to sit with children while they ran errands or attended meetings. The previous approaches we tried did not work out for a variety of reasons, including last minute schedule changes or because they left us stretched thin in other volunteer areas,” Berry Carter said.

Then in 2008 a hospital committee led by Volunteer Services with representatives from Nursing, Social Work and Child Life developed a four-month pilot program to better address the need without added cost. There were 39 requests for respite care during the pilot program. When the pilot ended, 97 percent of the staff who responded to a survey about the effort indicated the program was meeting a need and should be expanded. Five caregivers who participated indicated they would use the service again. They rated the volunteers as excellent in a number of areas, including the categories of “communication,” “professional” and “calm.”

In the program’s first 10 months, Helping Hands volunteers were most often called on by parents and caregivers of children ages 1 to 4 years old. Inpatient families were more likely to use respite care than outpatient, particularly those involved in leukemia treatment.

St. Jude Children’s Research HospitalSt. Jude Children’s Research Hospital is internationally recognized for its pioneering research and treatment of children with cancer and other life-threatening diseases. The hospital’s research has helped push overall survival rates for childhood cancer from less than 20 percent when the institution opened to almost 80 percent today. It is the first and only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children, and no family ever pays St. Jude for anything. For more information, visit www.stjude.org. Follow us on Twitter @StJudeResearch.

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