Overwhelmed with materials for patients?
Notebooks provide a place for everything
When patient groups have multistep and long-term teaching needs, clinical teams at the University of Washington Medical Center in Seattle often develop notebooks. It comes down to a decision of whether you want to hand out a lot of bits and pieces of information over the course of the care experience or give the patient all the information at once and hope they bring the manual back with them for physician visits, says Cezanne Garcia, MPH, CHES, manager of patient and family education services.
"Manuals are particularly useful when the team feels the patients and family members are overwhelmed with all the bits and pieces of information," she says. It works well with the institution’s goal to make patients an active part of the care team.
Increasingly, the manuals include a resource section that has information on Internet sites, self-care literature, listings for local organizations, and instructions on how to find organizations for support group needs, legal council, or continued learning about the patient’s particular disease.
There are no cookie-cutter formulas for education notebooks, says Garcia. That’s why the education department is working on a procedure that will coach teams through the decision process on how to design the manual to meet the needs of the patients, families, and clinical teams. As the medical center creates more notebooks, teams can review the various models and alternative features.
"That will get them to stretch their thinking beyond the more conventional patient education approach that tends to be more content or knowledge building and skill-oriented," says Garcia.
One care binder for oncology patients was created with a lot of input from patients. As a result, there are emotional and social support aspects to the notebook as well as the clinical orientation. Some of its distinctive features include a journaling section, self-care and self-help sections, stress management information, medication and symptom log sheets, a plastic sheet to insert business cards, another plastic sheet for family photos, an inexpensive three-hole punch so patients can easily add additional material to the binder, and a pencil organizer with pens.
"Many of these cancer patients see eight to 10 different clinicians and are on a series of medications that are hard to remember the names for. The binders help them feel empowered and better able to manage all the information and resource bits and pieces that are given to them," says Garcia.
Provide continuum of care
A notebook for expectant parents is produced by Sacred Heart Medical Center in Spokane, WA, but distributed through physicians’ offices in the outpatient setting when a woman is at the 20th week of her pregnancy. This notebook and its form of distribution have helped the hospital reach patients with essential information about the delivery process.
"The notebook has also created consistency within our system over the continuum so that our outpatient nurses and our inpatient nurses are all giving the same information throughout," reports Sherry Maughan, RN, director of women’s services at Sacred Heart. In a situation where there is a large volume of information as there is about pregnancy, it is better to create one single source, she says.
Expectant parents not only use the notebook at physician visits, they bring the notebook to the hospital when they come for orientation at about 36 weeks of pregnancy. At this appointment, they are taught from the notebook, and much of the information is covered again when they return for the delivery. They also receive a follow-up call after discharge and certain information is again covered to reinforce teaching, says Maughan. "If they run into a problem, question, or concern once they take their baby home, they can go back to the notebook, using it as a resource," she says.
One of the benefits of notebooks is that they provide an excellent reference system, says Nancy Goldstein, MPH, patient education program manager at Fairview-University Medical Center in Minneapolis. During classes for transplant patients, participants are shown where they would find answers to their questions in the notebook as information is covered. "The books are well organized, so it is easy for patients to know where to go to get the answer to their questions," she adds.
Notebooks also provide patients with an organized system for record keeping and can help patients know when to use the health care system. The information helps patients know when to call, whom to call, what problems are solvable, and which ones aren’t. For example, they would know at what point to call their health care professional when they had a fever. "They can provide real, definitive guidelines that really help a person know how best to use the health care system, and that is a benefit to all of us," says Goldstein.
If she could find one fault with the notebooks, it is that they are cost-prohibitive. In fact, Fairview-University Medical Center switched to spiral-bound booklets with a folder at the back for loose information. "A notebook itself is more costly, and it is labor-intensive because someone needs to collate the material. The other problem is that they are heavy, and the transplant patients are not well," Goldstein explains.
Notebooks at Sacred Heart Medical Center cost between $5 and $6. Costs are kept down because printing is done in-house and volunteers put the notebooks together, says Maughan. "The main cost of the notebook now is the binder and we are looking to see if we can bind them differently," she says.
It is difficult to calculate the costs of all the materials and management pieces given patients with long-term teaching needs over time, says Garcia. "I am not convinced that booklets are more expensive. I would guess that the cost is at least equal. The department does have to pay the cost of the notebook up front," she says.
The one negative aspect of the educational notebooks for expecting parents that Sacred Heart produces is their distribution. They must be delivered to between 15 and 20 physician offices. However, the consistency of information for both patients and staff across the continuum of care is well worth the effort, says Maughan.
Sources
For more information about creating notebooks to meet multistep, long-term teaching needs, contact:
- Cezanne Garcia, MPH, CHES, Manager, Patient & Family Education Services, University of Washington Medical Center, 1959 N.E. Pacific St., Box 356052, Seattle, WA 98195. Telephone: (206) 598-8424. E-mail: [email protected].
- Nancy Goldstein, MPH, Patient Education Program Manager, Fairview-University Medical Center, Patient Education Box 603, Harvard Street at East River Parkway, Minneapolis, MN 55455. Telephone: (612) 273-6356. E-mail: [email protected].
- Sherry Maughan, RN, Director, Women’s Services, Sacred Heart Medical Center, P.O. Box 2555, Spokane, WA 99220. Telephone: (509) 474-3173. E-mail: [email protected].
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