Informed patients often cope better and informed families are better equipped to offer care and support (2). Patients and families should be urged to be active participants in their care. Patient and family education occurs throughout the continuum of the disease. Information must be provided in both verbal and written forms and continually repeated and reinforced. Important periods requiring education along the disease course are at initial presentation of symptoms, hospitalization, diagnosis, initiation of new treatments or procedures, recurrence, and at end-of-life.
Information needs change over time. Patients and families require factual information regarding their particular diagnosis, treatment options, managing their medications, handling common symptoms and side effects, and recognizing medical emergencies. The key is to empower patients and families to effectively manage their own care. Also important are specific details on the likely course(s) of their illness and the supportive resources available to them over the course of their disease. The key is to provide accurate information so that patient and families can make informed decisions. Desperate families who have not been given adequate information may make decisions based on misinformation in the media, on the Internet, and from well-intentioned friends and family members. Information provided should be easy to understand and accurate. Adequate education can decrease anxiety and sustain confidence. Ideally, patient education materials need to be written at a ninth grade level or below and include simple words, short sentences, be reasonable in length, and in large print, usually 12 point or higher. They should also include, whenever appropriate, instructional graphics (3).
The team should encourage questions. Patients should be advised to keep a diary or journal and to write down questions and prioritize their concerns. This can result in office visits that are less frantic and can reduce the number of phone calls. Patients should be urged to bring someone with them to all appointments. Information should be provided in a calm and comforting manner. The key is to maintain an open line of communication between the team, the patient, and the patient's family over the course of the illness and to ensure that the communication and information is comprehensive and consistent. Continual teaching and reinforcement of previous teaching as well as interpretation of outside information is key to an open line of communication between everyone. The focus is on answering questions, providing information, and constantly repeating information. It is imperative to involve the family and other caregivers at all times. Patients will do better with complex treatment if they are informed and understand the goal of treatment (4).
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