Caregivers: a celebration

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.

_________________

* 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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Comments

18 Responses to “Caregivers: a celebration”

  1. Susannah, this is a fascinating report. I was a family caregiver for my mother for 10 years, two of which she lived with me and my family. I also have a special needs child so this report truly hits home. The D+ grade is generous in terms of completely underserving family caregivers with technology–even though we consume and assimilate massive amounts of health content.

    How would you (or anyone else) suggest getting employers to recognize the problems since these are people of working age? What is the employer’s obligation here, in your opinion?

    • Susannah Fox says:

      Thanks, David!

      I don’t have any data to offer, but I was just on a radio show with two experts, John Schall, CEO of the Caregiver Action Network, and Susan Reinhard, senior vice president for public policy at the AARP.

      John made the point that caregivers are often excellent employees AND employers find that it is more difficult to train a replacement than to just find a way to support an employee who needs flexible hours.

      Susan said that because caregiving cuts across so many demographic groups (and is on the rise) there’s a good chance that the boss is a caregiver now, too. She then went on to reference this paper:

      Supporting Family Caregivers With Leave Policies in the Workplace

    • Susannah, thanks for this fascinating and much needed report.

      David, I’m a geriatrician with a special interest in technology and in supporting caregivers.

      The caregiving resources online and in digital health are way behind what there is available for the “non-caregivers” but they are growing. I’m not sure how I’d grade it, but at least there seems to be more available every year!

      I do find it hard to find resources and tools that seem suitable for my patients & their families. Some of it is that most tools aren’t right for the sheer medical complexity that affects many older adults. Some of it is that chronic disease should often be managed differently in someone who is frail.

      Re employers, I’ve heard that some larger employers are starting to offer caregiver support education & support. Presumably they’ve noticed that caregiving issues can be an huge strain for their employees, and with the aging of the population, we will definitely see more and more people strugglig to juggle work and caregiving.

      People like Carole Levine have been advocating for caregivers’ rights and needs for several years now. Between the growing numbers of caregivers and work like this report, I’m optimistic that soon we’ll start to see real progress for caregivers.

  2. Bern Shen says:

    Susannah, ‘grats on another great report, & thanks for the reminder to those of us working on tech-enabled solutions for self-care that we should think more deeply about the role of caretakers…

  3. As a primary care physician for vulnerable, low-income chronically ill populations, few issues are more important to me than caregiving. I wish that we were optimally using health information technology to support caregivers, and I think a critical first step is a universal, transparent process for granting caregivers access to electronic personal health records, or patient portals, which allow patients to interact with health systems (sending messages to health care providers, reviewing results, refilling prescriptions) online.

    • Susannah Fox says:

      Thank you so much for this perspective. I hope our data can draw attention to this issue. What are the barriers? Systems that have only patient IDs as logins? Cultures or rules that don’t recognize caregivers as central? I’d love to hear more.

  4. Rajiv Mehta says:

    Hi Susannah — I’m glad this is finally out. It’s been hard keeping the information under wraps!

    On the issue of technology for caregivers, I’d like to draw people’s attention to two things. One is the recently published “Person at the Center” white paper by the ONC which goes into some depth on what needs to be done — accessible from this page: http://bit.ly/19qHrv6. And the other is my recent talk on “Health Technology for the Other 99%” (http://slidesha.re/11g308K). There’s much room for improvement!

    • Susannah Fox says:

      Thanks, Raj! You & me both on the “thank goodness I can finally talk about it” theme.

      Everyone: check out his slide deck. It’s essential to understanding why the Pew Research data is pointing to opportunities for families, policy makers, entrepreneurs, grant makers…all of us.

      “The Other 99%” is a clever way to remind people that most of us take care of ourselves and our loved ones 99.99% of the time (unless there’s something pretty serious happening).

      But I’d like to make a personal observation based on the last year of analyzing and talking with people about this caregiver research. I can now tell within about a minute whether someone has had first- or second-degree experience as a caregiver or being cared for. If yes, they literally lean closer and say something along the lines of, “This is so important, tell me more.” If no, their eyes glaze over and they say something polite but disinterested.

      I’m very glad I had this experience socially and in my own office before I started talking with reporters because otherwise I would have been *very* confused.

      Some reporters, when they got my pitch note, emailed back immediately asking for the report and, when I talked with them, some privately shared their own caregiving story. Other reporters wrote back, essentially, “No, thanks, I don’t see a story here.” To the second group, I silently said, “Best wishes for the continued health of you and your extended family.” It’s not quite the 1% (although if you are wealthy, you can more easily pay your way out of many caregiving tasks) but there is a divide between those who grok the caregiving situation and those who do not.

      I’ve written about how Pew Research data can be a mirror and a window and this report is an example. It’s a mirror for those who have cared for family members or seen that care up close. It’s a window for those who have not, a way to see in to a world they have not yet experienced. I feel a strong sense of responsibility to get the data right and to tell the story as best I can so that both groups are well-served. I want those in the “mirror” group to say yes, I see myself. I want those in the “window” group to say yes, I am learning.

      The economic downturn, the aging population, and the increase in the % of people living with chronic conditions mean that more and more people are going to be coming through the Looking Glass. I hope this research and the work of people like Raj can prepare the way.

      • Rajiv Mehta says:

        My experience very much reflects yours. When I speak with people who have had direct caregiving experience, and say that I’m trying to ease the mental burden of day-to-day care, they “get it” instantly. They know the pain is real. On the other hand, those without such experience have a hard time imaging that this is an issue. They think only the “big” things — how to pay for the treatment? is there a cure? — are important. They can’t imagine that the unceasing drip, drip, drip of care responsibilities is much of a burden. Usually such people will say that they’re glad someone is addressing this niche(!) problem, before moving on.

      • Veronica says:

        Susannah,
        Thank you for yet another ‘Looking glass’, which in this case touches me more deeply because for a variety of reasons there has always been caregiving in my family. It’s part of how and who we are. Hence I relate very truly to your distinction between who empathizes immediately and who can’t connect to this delicate yet heavy dimension.

        Having trained as a coach I am considering to offer pro bono coaching to provide caregivers with a space where to process emotions and where to focus on their own selves.
        Based on your research, do you believe that caregivers could be open to remote coaching and benefit from it?

        Veronica

      • Ian Eslick says:

        Hi Veronica, I’m pretty sure many people would appreciate coaching. The caregiver is there to support the patient, but people rarely appreciate that this makes the caregiver both be and feel more alone and divorced from their own support network. “I’m taking care of a relative” doesn’t invoke the same human sympathy that “I have cancer” does. It doesn’t sound as dramatic, but I think it can be just as difficult for many people to bear.

  5. Kathi Kinnett says:

    Susannah -
    Thank you so much for sharing. Your findings are fascinating and do indeed highlight the challenges of the sandwich generation. My experience is with the Duchenne population, mostly pediatric, all caregivers are parents, a lucky few who have some hours of paid care. I was surprised at the low percentage of parents who said they are providing unpaid care to a child of theirs under 18, but I may have a skewed perspective. An interesting question might be, how many of these parents obtained education or training in order to be their child’s paid caregiver? As they need income and their child needs more time and care, which takes them more and more away from their job, this is not an unusual scenario. And I wonder also how many might be caring, paid or unpaid, for both a child and an older family member, part or full time? This is a physically, emotionally and financially exhausted group – I doubt it is unique to patents of children with Duchenne.

    I participate (usually only watching unless the conversation and advice turns seriously wrong) several “groups” made up of parents of children with DBMD on Facebook, each with between 40-1100 members, but averaging 400ish parents/caregivers. I wonder if parents consider FB an online resource? There is no shortage of sharing, advising, reviewing, etc. I’m not sure if parent know which apps, review sites, etc, can be trusted. Peers, especially those with experience with a disease, hospital or provider, seems to be much more trusted than a “random” site. Perhaps there is a role for advocacy in supplying parents with reliable websites and a review of the apps available. Or a way to reach put to app developers to have rare, chronic disease communities trial apps for ease of use and value vs time. Parents really don’t have time to do that – asking Susie on FB is much faster and, after all, shes nice and she knows :).

    • Susannah Fox says:

      Thanks, Kathi!

      I have two sources to recommend:

      Erin Moore, a caregiver/mom, who has written about the good and bad aspects of Facebook communities on her blog, 66 roses.

      Laurie Orlov, who writes the Aging in Place Technology Watch blog, wrote about the minimal vetting available for caregiving apps and services.

      I wonder if anyone else has resources or ideas to share on the questions that Kathi poses — if so, please comment!

      • Kathi kinnett says:

        Thank you Susannah – I will check them out and pass them along! I have also found Herself First – a website started by Sheila Moeschen for caregivers. It, clearly, is intended for women, but has been well received.

  6. Ian Eslick says:

    If you’ve worked in the healthcare field, you know that we adults are absolutely horrible at taking care of ourselves. We put things off, ignore them, or just learn to live with them. We can’t be bothered.

    However, when you are responsible for someone else, you don’t blow them off as easily as you do yourself; instead, you get organized, you learn more, and you become more proactive. You see more directly the consequences of lacking information or being disorganized and perhaps that breeds self-awareness with regards to your own health needs.

    Rajiv nailed it when he said that unless you’ve been through it, the relentless “drip drip drip” of need just doesn’t sound that bad. In practice, it often becomes the emotional equivalent of chinese water torture; especially so for people who are predisposed to react badly to stress. You have no control and no escape, no matter how generous or easy going those you are caring for might be.

  7. Susannah, Your work is fabulous and so timely. I’m one of the many moms that ended up in primary caregiver role on my journey to motherhood. It’s been transformative – for me, my career and my life. It’s not an easy ride and each person has to find their balance. Some days it feels like it’s walking a tight-rope, or the Cat in the Hat when he piles so many things on his hat, or sometimes like a rubber band that has been stretched too thin.
    More education, more support, more open communication are needed to ease the burden. We can together be stronger – to show care better for all.

  8. Jim Giuffre says:

    Hi Susannah,
    Thanks for doing this report. The teaser has me very interested. Can you check the link you provided, as it dead ends. Thanks very much. Jim http://www.pewinternet.org/Reports/2013/Family-Caregivers.aspx

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