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Pew Internet Report Includes Dementia, Caregiving, Pain, End-of-Life Topics

Earlier this month, Pew released its latest report on what Americans look for online when they are searching for health information. Particularly exciting this time around: their survey included several new topic areas pertaining to geriatrics and palliative care.

In particular, Pew found that:

  • 17% of internet users look online for information about memory loss, dementia, or Alzheimer’s.
  • 14% of internet users look online for information about how to manage chronic pain.
  • 12% of internet users look online for information about long-term care for an elderly or disabled person.
  • 7% of internet users look online for information about end-of-life decisions.

Pew also surveyed respondents as to whether or not they were caregivers, and found that "Caregivers distinguish themselves in this study as people focused on health information. They outpace other internet users when it comes to researching every single health topic included in the survey, often by double-digit margins."

As some of you know, I'm very interested in how the Internet might be used to provide the public with improved access to geriatrics and palliative care expertise. (I'm currently working part-time on creating geriatrics content for Caring.com, an informational website designed for adults caring for aging parents.)

Although I suspect many online information-seekers may not know the terms "geriatrics" or "palliative care," clearly many of them are looking for help from people like us. Exciting! I sincerely hope Pew will continue to collect data on these very important topics. (They say they will release a report on caregivers later this spring.)

Now if only we could figure out an effective way of conveying our skills and expertise through the Internet...

by: Leslie Kernisan

Comments

I LOVE Pew Internet.

As a caregiver/media researcher/producer, I am acutely aware that families are turning to the Internet for caregiving information. But elder care providers are not there to meet them in their search.

Professionals may have a robust commercial site about their services, but that reaches people who know enough about the service to be actually seeking out that type of care. We all know that people self-identify as appropriate way too late. And in terms of PC, don't even know it exists.

I think you can reach the pre-hospice, or pre-palliative care family, and demonstrate your caring and expertise, but you need to do it through Web 1.0 methods. They are searching for education about their issue, but providers are not posting that type of information on their commercial websites.

For an example of what might be done, check out the offering by Delaware Hospice's Transitions program: www.seriousillness.org/delaware.

Social media does well with educational content. And professional-to-professional networking is hopping (Thanks Geri-Pal, and Palli-Med!). But the Pew Generations 2010 study shows that Boomer penetration with Facebook, for instance, is only 43% of the 76% of Boomers who are online, while email (think e-newsletters) and searching for health info are activities with 93% and 85% participation respectively. That's more than double social networking.

What does this mean for service providers? The data suggest you would want to offer educational information as part of your business presence on Web 1.0 and include the ability to subscribe to an e-newsletter. Cover topics such as those highlighted by Leslie, and in the weighted priority these data suggest: dementia, coping with pain (and other difficult sxs), getting help (essentially what a search for LTC is about), and end-of-life care.

Other studies indicate families are looking for information on local resources (think about providing an online directory of elder care services), coping with stress and paying for care.

By the way, this is nothing against social media. Geri-Pal is a great provider-to-provider connection, for instance, and Leslie, your blog (Older Patients, Wiser Care) is awesome for reaching family caregivers. I refer to it often on my facebook page! Unfortunately, only 25% of the 76% of Boomers who are online read blogs.

If we want to reach families, we have to follow the basic tenets of social work and marketing: Start where they are! Right now, critical mass is with Web 1.0 (search) and e-mail, so I'd say that's the place to offer educational information, bookmarkable resources and e-newsletters.
Mary Poole said…
When I started researching dementia it was in 1988, there were 4 sites that would come up on a search and two of them were punk music sites. On todays Google there are about 22,300,000 results. That says a lot.
caringrn said…
Maybe " you tube" is one of the ways to get this info out... Diane meier uses it to explain palliative care, and people send the links to one another all the time when it is a good video....
Video is also a great medium. Some of my work is with multimedia family caregiver interventions funded by the National Institute on Aging. The poignant stories that are common in hospice and palliative care really resonate well with family caregivers.

FWIW, Pew stats show that 55% of the 76% of Boomers who are online watch video over the Web. That translates to roughly 42% of all Boomers. YouTube is definitely one of the more accepted social media platforms among older netizens.
I'm encouraged that the number of people searching for information on hospice and palliative care is increasing. Awareness is critical!

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