People with diabetes, heart failure and other chronic diseases often live independent lives, without a traditional caregiver. But many have a family member or friend who plays a key supporting role in their health care, a new study published in the journal Families, Systems and Health.
The study finds that many of these "health supporters" wish they could understand their loved one's condition better, or get more involved in helping them navigate a long-term illness.
A team from the University of Michigan, University of Pittsburgh and VA Ann Arbor Healthcare System reports the results of a national survey of more than 700 adults who said they helped at least one adult family member or friend manage a common chronic illness.
The national survey focused on those who assisted with tasks related to medications, medical appointments, health care forms and cooking healthy food.
"Past studies have shown the people with chronic conditions who have more support from family and friends are more successful in managing their health," she said. "So it's important to understand more about what these health supporters are doing, and what they need from health care providers."
A team from the U-M Institute for Healthcare Policy and Innovation and the VA Center for Clinical Management Research, explored data from health supporters who helped at least one adult loved one manage at least one chronic condition from a list that included diabetes, heart diseases, chronic lung diseases, depression and arthritis.
On average, these health supporters spent two hours a week helping their loved ones with health matters. About 20% went into the examination room at their loved one's health appointments and an equal percentage spoke to their health provider on the phone.
Nearly half said they had talked with their loved one about the side effects of their medication, and nearly a third said they had talked about problems paying for those medications.
Both key issues that can cause people with chronic illness to cut back or stop taking important medicines that can ward off problems in the long term. Three-quarters had talked to their loved ones about pain or bothersome symptoms.
About half of the respondents said they didn't feel they knew enough about their loved one's condition and treatment. And only about 12% worried that they were getting too involved in their loved one's health. So The researchers then focused on the 45% of supporters who said they had had contact with their loved one's health providers.
While more than two-thirds of these supporters said that their loved one's health care providers had answered questions for them, less than half said those providers involved them in health decisions or suggested ways they could help. About a third said providers were not willing to share information with them.
With online access to individual medical record and appointment systems becoming more common, even family members who live miles away can be effective health supporters, Ann-Marie Rosland, who co-led the study while at U-M and is now at Pittsburgh, noted.
Patients who are competent to manage their own care should always have the right to decide what kind of family involvement they want, Lee and Rosland noted.
Once family members and friends are involved in a patient's chronic disease management, they may need training and support to help them have the most positive impact on patients, the researchers noted.