Informational Gaps, Needs, and Preferences of Adults with Chronic Health Conditions and Their Family Caregivers

The purpose of this cross-sectional, qualitative study was to determine unmet educational needs, preferences, and barriers experienced by individuals with chronic illness and their caregivers. A survey containing fixed-choice selections and open-ended questions was sent to persons with cancer and other chronic diseases who had been seen within a large national private health system. Between 20% and 25% of participants had difficulty obtaining health care information and/or felt overwhelmed with managing their condition. Coping, managing symptoms, and making treatment decisions were areas of need in both patients and caregivers. Preferences for receiving information were diverse. Existing methods of communication including secure Web sites where patients can access their medical records posed significant challenges.