I am always getting online and searching to see if there's new research coming out. I also look to see about doctors and if there's a better doctor for what she has. —Wendy Bills
Close to 4 in 10 American adults provide care to an adult or child with a significant health issue, according to a new Pew Research Center survey. Many of them find technology a helpful tool, whether they are searching for health information, are looking for information and support from others who share their experience, or are trying to figure out what symptoms might mean.
The finding represents a "pretty significant jump" in the percentage of U.S. adults who are caregivers, to 39 percent from 30 percent in 2010, according to Susannah Fox, associate director of the Pew Internet & American Life Project and lead author of the report. It's also the first large national survey that considers the questions in the context of the large increase in older Americans because of the baby boom. She said all questions asked for "Family Caregivers Are Wired for Health" focused on activities in the last 12 months.
That "age wave" of boomers combined with medical advancements that allow some people to live longer and others, like premature infants, to live at all, creates an increase in the percentage of adults and children diagnosed with chronic health problems.
The survey showed that "caregivers are heavy technology users and are much more likely than other adults to take part in a wide range of health-related activities," a written statement released with the report said. Fox calls caregivers "voracious consumers of information" using the Internet. As many as 72 percent of caregivers gather health information online, compared to 50 percent who are not caregivers. Caregivers outpace non-caregivers across the board when it comes to seeking out health-related information, participating in online social activities related to health, seeking diagnosis, finding a support community or looking at drug reviews.
The survey found that three-fourths of American adults 65 and older live with a chronic condition. Fox noted that managing the complexities of the conditions often falls on family members and friends.
Online resources have helped 59 percent of caregivers accomplish the task and 52 percent of caregivers with Internet access say online resources have helped them cope with the stress of being a caregiver, the survey found.
Erin Moore is a busy mom, with four kids under age 6. She's also a full-time caregiver to her son, Drew, who is 3 and has cystic fibrosis. The Cincinnati woman said she spends two to four hours a day online with health-related tasks, from checking whether her son's new medication has side effects to conversing with other parents whose children have the disease. She manages his medication supply online, looks up reviews and much more.
She also uses a text message program every day to track certain measures of Drew's well-being, such as weight and energy level or whether he's had a fever. It's a platform created by a guy from MIT and they're testing it out to show its utility for helping managing the illness and heading off problems. In addition, she tweets and blogs about her family's experience with cystic fibrosis.
That includes the insurance issues, the medication ups and downs, even the politics of research funding. "If I have to struggle through it, maybe someone else can benefit," she said. "It's also how I find other people."
"Peer-to-peer health care is a significant source of health information," said Fox, who noted that people who share a condition often turn to each other to learn about the experience, share tips and gather other information.
There would only be a small community for Wendy Bills' daughter, 31, who has a rare and disabling chronic medical condition. But going to the Internet reaches across geographic borders that would be impossible for the Riverton, Utah, mom to traverse physically.
"I am always getting online and searching to see if there's new research coming out. I also look to see about doctors and if there's a better doctor for what she has," said Bills.
For a decade, she also shared caregiver responsibilities for her mom with her siblings. When it was clear that the woman, who had Alzheimer's, required specialized care, Bills went online to look at facilities. The first time, she was "skunked" and found that reality and the pretty Web picture didn't match. But the next time around, she was able to narrow down her search to two facilities, then visit both and make a decision. Without the Internet, it would have been much harder, she said.
She also searches online for medications and information about side effects, symptoms and more.
Seven in 10 caregivers track one of their own health indicators, too, again more than non-caregivers, according to the survey. Those who are caring for someone else use technology to keep track of their weight, diet or exercise routine. Some use it to watch indicators like blood pressure or blood sugar. Female caregivers are more likely to do that than male caregivers are.
The survey included 3,014 adults in the United States questioned last fall. The researchers said the "caregiver effect" held even after they'd controlled for all other factors.
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