Caregivers Turn to Internet for Health Care Information, Support

by Lisa Zamosky, iHealthBeat Contributing Reporter

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The United States is becoming a nation of caregivers. Roughly 42 million people -- 30% of the U.S. adult population -- provide care to a spouse, parent or child.

Caregivers often are placed in the stressful position of having to make major health care decisions on behalf of a loved one or manage an aspect of care that requires knowledge that most people simply don't have.

So it's perhaps little surprise that a recent Pew Internet and American Life Project report found that family caregivers go online in search of health information at rates that far exceed other groups.

"Your first instinct, especially if it's a diagnosis you're not familiar with or a treatment protocol you don't understand is to go online and Google it and find out more," said MaryAnne Sterling, founder of Washington, D.C.-based Sterling Health IT Consulting. Sterling is also a long-time family caregiver.

According to the Pew report, eight in 10 caregivers have access to the Internet, with nearly nine in 10 of those caregivers using it to find health information on behalf of someone else.

Caregivers are more likely to report having gone online to search for information on behalf of another person, rather than for themselves. Sixty-seven percent of caregivers reported that their last search for online health information was on behalf of someone else, while 29% said their last online health search was for themselves. In comparison, 40% of non-caregivers who went online looking for health information did so on their own behalf.

The tendency to do for others what we may not do for ourselves when it comes to searching for health information didn't come as a surprise to Susannah Fox, associate director of digital strategy of Pew's Internet & American Life Project and co-author of the study.

"It's very important to keep in mind that when someone isn't feeling well they may not feel up to looking up information. That's something you can do for your loved one," Fox said.

But that doesn't mean caregivers aren't online looking to meet their own needs. "Many family members who are caregivers are not only looking for health information to help the person they are caring for, but also to find resources to help themselves," said Lynn Feinberg, senior strategic policy adviser with the AARP Public Policy Institute.

What Caregivers Look for Online

According to the Pew report, caregivers' top Internet searches included the hunt for information about memory loss, dementia or Alzheimer's disease, as well as long-term care for the elderly or disabled.

Seventy-six percent looked online for specific disease information, while 69% searched for information about a particular medical treatment or procedure.

The search for doctors, other health care professionals (51%) and hospitals (44%), as well as topics related to health insurance (39%) all made the top five searches of interest to caregivers, according to the Pew report.

According to an AARP caregiver survey -- titled, "Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving" -- caregivers have a dizzying array of tasks, including providing companionship and emotional support, preparing meals, managing bills and insurance claims, arranging and coordinating services, and administering and managing multiple medications. This last task, Fox said -- making sure a loved one is taking their medications properly -- is among caregivers' greatest concerns.

"You're being asked to manage a very complicated situation that you don't necessarily have the training for, but it's a daunting level of responsibility," she said.

The Pew report also found that caregivers -- much more than non-caregivers -- tend to be more social about their health care searches. Caregivers followed another person's personal health story and health updates online at rates higher than non-caregivers.

Finally, the report found that caregivers are more active than non-caregivers (38% vs. 18%) in searching out what others have to say about drugs, clinicians and medical facilities in the form of online reviews. According to Fox, reviews may add an additional layer of information that aids caregivers needing to make quick decisions on behalf of their loved ones.

New Ventures Help With Daily Tasks of Caregiving

With the numbers of tech-savvy caregivers swelling, organizations and entrepreneurs are working to provide websites and apps that offer information, resources, support and help managing the daily tasks associated with caregiving.

"There has historically been a lot of information on disease states and disease conditions and the medical elements [of caregiving]. It's been more recent that the marketplace has discovered there is a real need in the caregiving community in managing all of the overall tasks the caregiver has to do," John Schall, CEO of the National Family Caregivers Association, said.

A host of websites provide information on a wide range of caregiving resources. NFCA's website offers caregiver resources, as does the Alzheimer's Association, The Family Caregiver Alliance, the AgingPro National Online Eldercare Resource and AARP's Caregiving Resource Center

"The idea is to be a gateway to help family members to talk with experts, ask questions about a disease or disability or diagnosis and get support for themselves," Feinberg said of AARP’s site.

Sites such as Lotsahelpinghands.com, Carezone.com, CaringBridge.org and Caregiverstouch.com all allow caregivers to create a virtual community connecting friends and family members interested in pitching in to help with caregiving tasks.

"There's a huge need for that and that's why people are reaching out for it," Schall said.

Carelinx.com and Care.com are among a breed of online resources helping people locate respite and in-home care, senior housing and a host of other services.

"Most families need assistance and guidance in navigating the complex range of options available to them as their loved ones age," said Jody Gastfriend, vice president of Senior Care Services at Care.com.

Unfrazzle.com and Cozi.com have been developed to help overwhelmed caregivers stay organized by keeping track of medical appointments and scheduling family members and friends willing to help with caregiving activities.

In recognition of caregivers' active lives online, NFCA has just launched a new tool called Plugged-In Caregiving, developed to help people "navigate the maze of caregiving technologies."

Outstanding Gaps To Fill

With the vast array of online tools aimed at making the lives of caregivers easier, there are still gaps between what's available and what caregivers really need.

Some of the most daunting tasks caregivers take on, experts say, are those traditionally reserved for doctors and nurses.

Sterling said that family caregivers regularly perform medication administration, wound care, and they often work with IVs and catheters. "These are activities that family caregivers are ill-trained to perform and if done incorrectly can result in very poor outcomes for that patient. There is no magic bullet yet [or a place] where caregivers can go for this much more complex information."

Despite the technological advances, the complexity of their role still requires caregivers to seek out the human touch.

"My own professional belief is that the Internet is an excellent tool for seeking out information, but for actually making choices once you gather that information, nothing substitutes having someone to talk to who is knowledgeable and can guide you through that process," Feinberg said.


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