Family caregivers are stuck in professional role with little training
October 1, 1997 5 minutes read
Family caregivers are stuck in professional role with little training
Education, support needed to boost confidence and reduce stress
In today’s health care environment, family caregivers are a vital part of the medical team; yet they are rarely treated as a team member.
As hospital stays are shortened and more medical procedures are being performed in the outpatient setting to save costs, families are given responsibilities that once belonged to the health care professional. However, families do not have the experience, skills, training, supervision, or resources that are available in the medical setting, says Peter S. Houts, PhD, a professor in the department of behavioral science at Pennsylvania State University College of Medicine in Hershey.
"We need to think of family caregivers as people who are taking a major part of the responsibility for care; and as health professionals, we have to give them the tools they need," says Houts.
There are an estimated 25 million caregivers in the United States who provide home-based health care services worth more than $300 billion annually. Family caregivers provide at least two-thirds of all home care services, according to the National Family Caregivers Association in Kensington, MD.
As the population ages and medical science extends people’s lifespan, the population of caregivers continues to grow, yet their importance is not recognized by the medical community, says Suzanne Mintz, president and co-founder of the National Family Caregivers Association. The education and support family caregivers need is lacking, she says. (To learn how to provide more recognition for the needs of caregivers, see story on National Family Caregivers Week, p. 119.)
The shortened hospital stays have reduced the amount of time the patient is well enough to learn self-care skills. Also, there are fewer days for health care providers to devote to patient and family education.
"Given that education plays an integral role in helping achieve optimal health outcomes, this gap can contribute to higher health care costs due to unscheduled readmissions, complications, and more calls to providers," says Annette Mercurio, MPH, CHES, director of health education services at City of Hope National Medical Center in Duarte, CA.
Patient education managers play a vital role. They are in a key position to develop programs to provide the education required by family caregivers and to educate management and the public about the importance of family caregivers and their need for support services.
Creative methods for education
To help caregivers learn how to manage care, Houts created a course called the Prepared Family Caregiver Course. It teaches family caregivers an orderly problem-solving approach that not only helps them solve the day-to-day physical, psychological, and social problems of caregiving, but it teaches them how to interact with health professionals.
"It is not feasible for the caregiver to keep calling the provider for guidance," says Houts. Therefore, family caregivers must learn to be managers using the techniques health care professionals use, he says. There are versions of the course for cancer, advanced cancer, HIV and AIDS. (To learn how the course works, see story, p. 121.)
Memorial Sloan-Kettering Cancer Center in New York City offers the Prepared Family Caregiver Course.
"The course has been valuable for the concrete information caregivers are getting and also for the opportunity to meet other caregivers. When they meet as a group, they learn that other people have some of the same frustrations, fears, and concerns," says Ana Marchena, MA, health education specialist at the cancer center.
Yet the course is just a starting point. It’s important to link caregivers up with other resources as well. At Memorial Sloan-Kettering, the education department created a resource sheet that lists services, such as the counseling center, that are available at the medical facility. Outside resources also are listed, including reading materials, organizations, and support groups. The list is complete with telephone numbers to minimize the time and energy needed to do research. Provide as much information as possible for caregivers because they usually are overwhelmed by their responsibilities, explains Marchena.
Multitude of needs to address
Caregivers have many needs that must be addressed, says Mary Willis, coordinator for the Parkinson’s Program at City of Hope National Medical Center in Duarte, CA. They must learn all the medical aspects of the disease their loved one has. For example, if the caregivers are dealing with Alzheimer’s disease, then they need to learn the stages of disease progression so they know when to place their loved ones in a home.
Families trying to cope with the lifestyle changes brought about by a chronic disease or severe illness must learn how to communicate with each other and voice their feelings. Often, counseling or a support group is needed to help them identify and express cares and concerns openly. Willis coordinates several support groups at City of Hope. Some target caregivers of Parkinson’s disease patients, and others are for caregivers in general. It doesn’t matter what the chronic disorder is or whether the caregiver is a friend, child, spouse, or parent they all are dealing with emotional stress, says Willis.
Many caregivers lose their identity because all of their time and energy is focused on the care of their loved one. Therefore, caregivers need respite. Friends and families need to learn how to intercede by taking over some of the tasks the caregiver does, such as grocery shopping, and caregivers need to learn how to delegate, says Willis. In many instances, caregivers need time away from their loved one, and they must learn that they are not the only ones who can provide the care. (For details on adult day care as an avenue for caregiver support and education, see story, p. 120.)
Financial counseling is often helpful because chronic disease can drain family savings. Caregivers need referrals to professionals who can help with financial planning and government agencies that offer monetary assistance, says Willis.
The best way to provide all these services is in a patient and caregiver resource center, she says. Currently, she is working with Mercurio to open such a center at City of Hope. A key component of the center will be a skills-building section from which caregivers can learn such patient care techniques as how to give a patient a bath, how to make a bed with the patient in it, and how to lift a patient from a wheel chair to a bed. They would also be able to reinforce skills they were taught in the hospital such as how to give an injection or insert a catheter.
"Medical science now keeps people alive who would never have lived a few years ago, and that creates more caregivers. These caregivers need education, for so much of what they do is high tech and medical," says Mintz.
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