12-hour caregiver program helps families cope
12-hour caregiver program helps families cope
Course helps caregivers face uncertain future
The diagnosis and treatment of a brain tumor often come with little preamble, leaving caregivers unprepared. And, because brain tumors strike at the very center of human thought, emotion, and movement, changes in cognition and personality, as well as symptoms of seizure and fatigue, can quickly overwhelm the patient’s primary caregiver and stress the patient’s support system.
For the past two years, the National Brain Tumor Foundation in Oakland, CA, has been fine-tuning a caregiver training course for the brain tumor community in the San Francisco Bay Area. It is designed to teach family caregivers practical home care skills and prepare them to become more active in the management of their loved ones’ health care needs. With a major nursing shortage threatening to reduce still further the services case managers can provide patients and families in need, programs like the NBTF’s may help fill gaps in the health care delivery system. The NBTF now plans to extend the program’s reach to other parts of the country.
"On a personal level, our goal is to reach family caregivers and encourage them to take the course before their need becomes critical," says Sara E. Haynes, BA, patient services program manager with the NBTF. "On an organization level, our goal is to demonstrate that home care, delivered by trained, nonprofessional caregivers, is an effective and low-cost alternative."
The course was funded by a three-year United Way grant. "We knew through our survey of our patient information line that 70% of all requests for information and support came from someone other than the patient — a family member or friend," says Haynes. "We also knew that most of the requests dealt with basic information and support — practical home care issues."
In addition to monitoring calls to its toll-free patient information line, the NBTF held several informal focus groups of eight to 10 current and past caregivers. "We found that caregivers were very ready to tell us what their information needs were," notes Haynes. "Unfortunately, their needs were all over the map."
The NBTF turned to Home Care Companions, a home health agency in San Francisco with an established training program for people caring for AIDS patients. "Home Care Companions had developed a successful curriculum for the AIDS population. We went to them to help us develop our training course. AIDS and brain tumor patients have some disease-specific care needs, but many issues affect all caregivers no matter what the diagnosis."
Using the data gathered from the patient information line and the focus groups as a guide, the NBTF developed a 12-hour course spread out over four-weeks. Education modules are presented by local health care professionals. "We offer an honorarium, but most of our presenters teach for free," says Haynes. "We have developed relationships with the local brain tumor community, and the professionals feel as committed to helping caregivers as we do."
The power of yes’
The course is offered in the evenings, and dinner is included with the free education program. The course covers these eight topics:
• Night 1/Part A: Overview of the medical aspects of brain tumor. "We call this Neuroanatomy 101," Haynes says. "The class is presented by a neurosurgeon, oncologist, or neuroscience nurse. We also cover treatment options."
• Night 1/Part B: Neuropsychological conditions and symptoms. "We ask a neuropsychologist to present this part of the course," she notes. "This is a professional many family members don’t know about. A neuropsychologist can be a wonderful resource to help families evaluate and manage personality and cognition changes in brain tumor patients."
• Night 2/Part A: Symptom control and side effects of treatment. The neuroscience nurse usually presents this education module, which helps prepare caregivers for the most common side effects of brain tumor treatment. "We provide caregivers with a list of tools to have in the home, such as medication to reduce fever," Haynes says.
• Night 2/Part B: This is the most popular module of the 12-hour course, Haynes notes. "We bring in a physical therapist to talk about the body mechanics necessary for basic home care skills, such as transfers. We always have at least one caregiver present with a back injury from trying to lift a patient improperly."
Course participants practice proper techniques on each other, explains Haynes. "For the rest of the evening, they practice lifting each other from chairs, lifting each other up from the floor, and transferring each other from a chair to the bed — it’s really important to do these lifts and transfers properly, and few people have any idea how to perform those tasks without injuring themselves."
• Night 3/Part A: Organizing a support network. "This night is not just about asking everyone you know to help out," Haynes stresses. "We teach caregivers how to strategically ask the right people to help."
The NBTF trains caregivers to create a detailed schedule that includes every task that must be included in a day. "We ask them to keep that list close at hand, and when people ask, Can I help?’ We tell them to answer with a firm, Yes!" That yes’ should be followed with a very specific request." In fact, the first thing caregivers see when they arrive for class on the third night is a large flip chart with the word "yes" written in large bold letters. "It’s important that caregivers assess their needs before they become critical and learn to accept assistance," Haynes stresses. "Without assistance, caregivers are quickly overwhelmed."
The key to organizing a team of volunteer supporters is making requests specific and simple, Haynes says. Examples that the NBTF provides caregivers include:
— If a neighbor goes to the store every Wednesday, ask if the neighbor can pick up a few items for you while they are out doing their own shopping.
— Ask one neighbor to come over and take the trash out to the curb the night before trash pickup.
"We urge caregivers to chart out an entire week and assign jobs," she says. "However, it’s very important that these requests come from the caregiver and not the patient. "It’s not fair for the patient to make a request. It’s very difficult for anyone to turn down a family member or friend faced with a life-threatening illness."
• Night 3/Part B: Accessing community resources. A social worker delivers this part of the curriculum. "We discuss the need for respite care — not only to prevent caregiver burnout, but also to help the caregiver identify and assess changes in the patient for the physician," says Haynes. "It’s impossible to notice subtle changes in cognition, function, or weight gain or loss if you are constantly by the patient’s side. You have to go away and see if you notice any physical changes when you return."
Haynes says that many caregivers in the focus groups mentioned that they learned about available community resources too late to take advantage of them. "Few people are aware of the many programs available in their community," she notes.
• Night 4/Part A: Legal issues. An attorney leads this section, which covers wills, advance directives, and power of attorney. "We present this segment not from the standpoint that the patient must, for obvious reasons, have a will, advance directives, etc. We stress that the caregiver must also have these legal documents in order," she notes. "What if something unanticipated were to happen to the caregiver? Who would take care of the patient? There must be a contingency plan — a caregiving hierarchy — that spells out who will assume the caregiver role should the primary caregiver not be available."
• Night 4/Part B: Funeral planning. This is the education module that shocks most people, Haynes admits. "We ask a funeral director to come in and discuss the decisions families must make when faced with death. However, more than that, we are brokering an introduction to yet another professional that people ultimately will have to deal with. This is consumer awareness of funeral planning." The course is not meant to be a support group, but for many of the roughly 100 individuals who have completed the course, informal support networks develop as a natural extension of the bonds established during the program.
"During breaks, we would gather and share information and ask each other questions," notes Mike Meherin, a resident of San Jose, CA, whose wife has been diagnosed with a brain tumor. "That exchange of ideas and information was very beneficial. I still keep up an e-mail correspondence with people I met in class."
Caregivers leave the program with a resource binder that contains all of the information covered in the class. "I know the information is there when I need it. The class gave me an awareness of what was coming down the line. As situations arise, I know I can pull out that binder and find what I need," Meherin says.
Unfortunately, brain tumor patients often deteriorate so quickly that caregivers don’t have the time they need to absorb and implement the skills learned in class. Stan Tsu of Cupertino, CA, attended the course, but his wife’s needs quickly outdistanced the training. "As I learned new skills, I had to apply them immediately," recalls Tsu. "My wife went from diagnosis to death in a very short period of time. The NBTF training was right on the mark. It always seemed like as I learned something, I had to use it right away, or at times, I learned things I really needed to know the week before."
The NBTF currently receives referrals from its own patient information line, local hospitals, clinics, physician groups, and service agencies. "We’ve actively been working to improve our recruitment. We realize that we need to get to caregivers as early as possible following diagnosis. Recruitment is always a problem for caregiver training programs," Haynes notes.
To measure the effectiveness of its program, the NBTF administers a pre- and post-class questionnaire that includes an opportunity for open comments. "We test caregivers’ knowledge of basic course content, such as three things to do for someone who is having a seizure. We also ask caregivers to tell us about their own perception of overall improvement," Haynes says. "What we hear most often is that caregivers are now able to approach issues they were reluctant to talk about with the patient prior to the course — tough issues, such as dying. They also tell us they have much greater empathy and understanding of the changes the patient is experiencing."
The NBTF is coming to the end of its three-year United Way grant, but not before launching a pilot program in Los Angeles later this year. "We want to continue to provide the program free of charge," explains Haynes. "The Los Angeles program will help us understand what our real costs are and what it will take to present the program throughout the country."
For more information, contact the NBTF patient services line at (800) 934-2873, or visit the organization web site at www.braintumor.org.
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.