Many people who suffer from chronic disease, such as diabetes, heart failure, lung conditions, arthritis or depression, often lead independent lives without an immediate need for a traditional caregiver. However, they do rely on family support to manage their health.
In a recent study conducted by a team from the University of Michigan, University of Pittsburgh and VA Ann Arbor Healthcare System, researchers surveyed over 700 adults who help a loved one manage a chronic illness. The survey focused on assistive tasks dealing with medications, doctors appointments, health care forms and cooking, and how the participants perceived their role in supporting their loved one.
Published in Families, Systems and Health, the survey results suggested that these health supporters would like to be more involved in the care, especially by developing a deeper understanding of the illness and interacting with their loved one's doctors. According to the study's leaders, insight into these health supporters' experience is helpful for determining what they may need from health care providers.
Importance of family support
Research shows that family and friends can play a critical role in helping patients manage common chronic diseases. In a paper published in Current Directions in Psychological Science, researchers at Penn State suggested a family approach to managing chronic illness can have effective, long-term benefits. Patients and family members work together to monitor symptoms, follow medication regimens, maintain a healthy diet, encourage regular physical activity and manage medical appointments. Researchers from the University of California also highlighted the importance of family and social support, specifically for diabetes management.
While the survey results supported the notion that family health supporters help their loved ones with critical aspects of health care, the researchers also found that many of them worried about being left out by health care providers. Forty-one percent of respondents felt they did not know enough about the condition or treatment, and only 12 percent felt they were too involved in their loved one's care. The results suggested that the respondents felt they could be more helpful if they were more involved.
While many health care providers may be wary of involving health supporters because of privacy concerns, the researchers suggested that doctors ask for the patient's permission as a first step for better involvement. If they do designate their health supporter as an individual who can receive sensitive information, providers can begin to improve communication with that family member or friend. As they are already so important in managing their loved one's care, access to more information about the condition could be helpful in improving their support role.