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Designed for first-time home caregivers
Real-life scenarios, used to show the emotional, physical, and financial impact of taking care of chronically ill loved ones, have proven to be an effective form of instruction for families considering home care. The slices of life are viewed on video and are part of a home care family education package produced by Washington, DC-based State of the Art. The package is designed for caregivers in the early stages of at-home care to provide a realistic view of the role they are about to assume.
"The package focuses on the laymen, recognizing that people come to home care from a wide range of preparedness, both in terms of their formal education and in terms of their training and understanding of medical terms and their coping ability," says Grady Watts, MA, vice president of State of the Art, a multimedia communications company.
The project was funded by a grant from the Rockville, MD-based National Institute of Mental Health, Office for AIDS Research. As part of the grant requirements, two of the scenarios in the videotape series focus on families caring for loved ones with AIDS. However, the information on care is general in nature and covers a cross-section of home care, including care that is highly technical in nature and end-of-life care in the home.
Because home care is distinctively different for each age group, there is a video that focuses on the care of children, one on adults, and a third on older adults. In each stage of life, there are issues of community involvement — whether school, work, or participation in retirement activities — that are important to an individual’s well-being, says Watts. "We wanted to present home care as integrative as opposed to isolating, based on the notion that psychosocial factors are very important in the recovery and treatment of disease," he explains.
The written materials also contain age-specific information. Symbols depicting a child, an adult, and an older adult quickly direct caregivers to appropriate information within the text. For example, in the section on where to go for help, the adult symbol alerts readers to tips on where to find transportation for adults with disabilities. The older adult symbol is next to information about selecting an adult day care center. The child symbol draws parents to a paragraph that discusses trading baby-sitting hours with other families who have a child with medical needs.
Research finds material helpful
State of the Art designed a study before marketing the home care education package to make sure the information and delivery system were beneficial to home caregivers. They found that 96% of those participating found the video helped them provide better care for their family; 95% reported that the video helped them increase their knowledge about home care; and 91% mentioned that the video improved their outlook of their situation as caregiver.
The study used a sample of 130 caregivers of critically and chronically ill clients of home health agencies. The caregivers were given pre- and post-tests to determine how the materials had made a difference in their home care-related knowledge, attitudes, behaviors, and circumstances. A control group received the educational materials after data collection.
The design of the materials played a big part in their success, says Watts. Each video profiles three families who were selected to show a diverse group of home caregivers. Families without much money are depicted to show that you don’t have to be rich to afford home care, and a male caregiver is profiled even though women typically are the caregivers. "We also wanted to address ethnic diversity and regional diversity, so we filmed this all over the country," says Watts.
The Home Care Organizer is a three-ring binder so caregivers can rearrange the sections and add information they come across. There are five categories, which include:
• Getting Started.
This section explains what home care is, where to go for help, how to choose the right home care agency, and ways to pay for home care. It also explains how to adapt a home to the patient’s needs and how to make sure the caregiver does not burn out.
• Patient Information.
This section has handy sheets for listing pertinent numbers, such as that of the home care agency and supporting caregivers. It also has a sheet for scripting calls during a medical emergency. For example, there is a section in which to write the symptoms that require medical attention, what to tell the emergency dispatcher, and what medications the patient is on. There are also schedules for daily and weekly needs as well as for medications. All the sheets for tracking can be photocopied.
• Caregiver Communication.
This section contains a log so all parties involved in the patient’s care can communicate efficiently.
The home caregiver will find contact information for several organizations in this section. Categories include disease-specific organizations, home care and hospice organizations, and age-specific organizations. There are also lists of hotlines and publications.
The glossary provides definitions for medical terms (such as foley catheter) and medical professionals (such as oncologist).
These materials can easily be adapted to many health care settings. Families can watch the video before the patient is discharged at the patient/family resource center, or the video could be installed on the hospital’s closed-circuit television system. Copies could be made available for checkout, or a copy could be given to the patient to keep along with the home care organizer. The materials can be available at a hospital, clinic, or home care agency.
In May, a version of the home care organizer will be on-line so all family members can participate in the home care process, even if they live far away. They will be able to do so through an e-mail/bulletin board arrangement. "It will bring families together, providing a hub between the local caregiver, the primary caregiver, and extended family. Anyone who wants to get involved in the process and support it can do so on-line," says Watts.
(Editor’s note: A public television broadcast using video from the nine scenarios depicted in State of the Art’s Home Health care series will air in May 2000. Dana Reeve, wife and primary caregiver of actor Christopher Reeve, who was paralyzed in a riding accident, will host Caregivers: The Heart of Home Care. See local listings for times.) n
For more information on the Home Care Family Education Program, contact:
• Grady Watts, MA, Vice President, State of the Art, 4455 Connecticut Ave., N.W., Suite B-200, Washington, DC 20008. Telephone: (202) 537-0818. Fax: (202) 537-0828. The videos cost $12.95 each, and the organizer is $14.95. Add $5 for shipping and handling. To order, call (800) 790-9267. Web site: www.forhomecare.com.