Becoming a caregiver seems to change people as health information consumers. They turn up the volume on every information source. They track down information as if it is a competitive sport.* They don’t let pay walls or office hours stand in their way. It’s akin to becoming a parent for the first time, but it’s not celebrated in the wider culture. Nobody throws you a shower, that’s for sure.

This site is named for patients, but from the beginning we have included caregivers — those people who support e-patients at every stage of their health, diagnosis, treatment, and (hopefully) recovery (but sometimes their decline). The same goes for the Pew Research Center’s health portfolio — there’s quite a bit of focus on how individuals gather, share, and create health information for themselves, but we have always recognized the importance of the support team.

Today we released a new, full-length report devoted to caregivers and I couldn’t be more excited to share the data with this community:

Family Caregivers are Wired for Health: 39% of U.S. adults provide care for a loved one, up from 30% in 2010, and many navigate health care with the help of technology

There’s a lot to unpack, so here’s a quick run-down of some highlights:

  • Caring for a loved one is an activity that cuts across most demographic groups, but is especially prevalent among adults ages 30 to 64, a group traditionally still in the workforce.
  • When controlling for age, income, education, ethnicity, and good overall health, caregivers are more likely than other adults to:
    • Gather health information online, particularly about medical problems, treatments, and drugs.
    • Gather health information offline, from clinicians, friends, family, and others who share the same health condition.
    • Go online specifically to try to figure out what condition they or someone else might have.
    • Consult online reviews about drugs and other treatments.
    • Track their own weight, diet, exercise routine, or other health indicator.
    • Read online about someone else’s personal health experience (which, in the case of caregivers, could be related to their own or their loved one’s condition).
    • Go online to find others with similar health concerns (again, there may be dual motivations to connect — to find more information about handling caregiver stress, for example, or about their loved one’s health challenges).
  • 39% of caregivers manage medications for a loved one, such as checking to be sure pills are taken properly or refilling prescriptions. Just 7% of caregivers use online or mobile tools, such as websites or apps, to do so.
  • When asked about the specific impact of the internet:
    • 59% of caregivers with internet access say that online resources have been helpful to their ability to provide care and support for the person in their care.
    • 52% of caregivers with internet access say that online resources have been helpful to their ability to cope with the stress of being a caregiver.

Let’s stop there and consider: we have a large and growing group of people who are trying to conduct on-the-job training for themselves using the internet. They are more likely than other adults to have internet access and a mobile device. Many of them act like the kid who sits in the front row of every class, taking copious notes, clapping erasers for the teacher (anyone younger than 40, ask an older friend to explain). And yet if this report could be seen as a report card for how we as an online community are serving them, frankly it’s a D+. I would love for us to discuss this in some depth in the comments — or any of the other findings.

I must acknowledge a few key people who contributed to this report. First, my colleagues at the Pew Research Center — especially Maeve Duggan, Lee Rainie, Joanna Brenner, Michael Keegan, and Kristen Purcell. Support for this study was provided by the California HealthCare Foundation and I benefited from the advice of both Margaret Laws and Emma Dugas. As soon as we had a draft of the report, I shared it with community peer reviewers Denise Brown, Lynn Feinberg, Rajiv Mehta, John Novack, and MaryAnne Sterling, each of whom provided incredibly detailed and thoughtful commentary (alerting me to the significant economic and demographic news that we’d stumbled upon).

Alexandra Drane and her team at Eliza Corp. are also stalwart supporters of this research. Their Vulnerability Index (part of the Unmentionables work they do) is incredibly important to acknowledge and understand. Alex talks about how being a caregiver should be recognized as a clinical condition, it can have such a significant effect on people’s health. I’m wondering if NOT having an engaged caregiver should be a diagnostic code. As Ezra Klein wrote (regarding home visits by trained nurses): “If this was a pill you’d do anything to get it.” And if you can’t get it, you better hope you have someone in your life who can fill in.

Please, read the report and let’s talk about the implications.

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* When I tweeted this, Steven Posnack tweeted back a joke about the Caregiver Games (like the Hunger Games) leading me to ask: who would you pick to be your caregiver later in life? Peeta or Gale?

 

 

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