I had lunch today with Mona Hanford, who shared her vision for helping people navigate to the end of life, based on her own experience as a caregiver for her husband.
Our conversation led us to the observation that caregivers often feel like they have to keep fighting on behalf of their loved one. If they could just type in the right search terms, the answer will pop up. If they could just send up the right prayer, a cure could be found. But we know that isn’t possible. Sometimes the best path is via the Serenity Prayer, to accept the things we cannot change, including death.
There is a time for searching and there is a time for being at rest. A good reminder as I put the finishing touches on a report about how caregivers use the internet!
I will be part of a panel on self-tracking at the Health Datapalooza in Washington, DC, on Tuesday. My fellow panelists include Naveen Selvadurai, a co-founder of Foursquare; Roger Magoulas, the director of market research at O’Reilly Media; Jodi Daniel, director of the Office of Policy and Planning at the Office of the National Coordinator for Health Information Technology; and Abdul Shaikh of National Cancer Institute’s Health Communication and Informatics Research Branch.
The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a neighbor, either now or in the past, please consider writing a comment below. Links to your own blog or videos are welcome — or feel free to email me directly: sfox (at) pewinternet.org.
One challenge we face in telling this story is that lots of people don’t think of themselves as caregivers. They are simply helping out, doing what needs to be done. Maybe the role crept up on them, as their parents got older. Maybe the role was thrust upon them, when a neighbor who lives alone fell ill and had nobody else to turn to. That’s why we don’t use the word “caregiver” in our survey questions, but rather ask about activities and relationships.
Another challenge is that, at first glance, caregiving doesn’t appear to have much to do with the internet. So why focus on this group when tracing the social impact of the internet? Three reasons:
Caregiving has changed. It’s not just bathing, dressing, and feeding anymore. It’s complex home medical care.
Caregivers are wired. They are more likely than other adults to use the internet, especially for health.
Caregiving is growing. In 2010 we found that 30% of U.S. adults cared for a loved one, either an adult or a child. It’s a bigger number now and we are only at the beginning of a sobering age wave.
Consider: People ages 65 and older represented 12.4% of the U.S. population in the year 2000 but are expected to grow to be 19% of the population by 2030. Further, medical progress has saved and extended many adults’ and children’s lives, but often with an increasingly complicated home regimen of special diets and medications. Suzanne Mintz of the National Family Caregivers Association put it well: “This is a brand-new phenomenon because people used to die quickly. People die now from things that go on and on and on…”
In the video below, Suzanne talks about how her life’s work is to give caregivers a sense that there are other people who share the same feelings, to connect them with resources, and to support them in their work. Our upcoming report will provide some benchmark data about how that’s going for caregivers with internet access.
I’m collecting more resources related to caregiving in a Storify – kind of an inspiration board for people who are tuning in to this story of demographic change, medical progress, and love.
Again, please share your own story in the comments if you can shed light on caregiving.
If you haven’t read it yet, please do. It is damn good and damn right. Sorry. It’s just that I feel like the frog in the pot who just saw the thermometer.
As I often do, I shared my feelings on Twitter:
Let’s all work on stuff that matters today. Me: caregivers. You?
One year ago this week I ported over five years’ worth of posts from e-patients.net and launched this blog. But I have never shared the story behind the susannahfox.com domain name (and there is a story). Here it is: Continue reading →
Here’s a question I received recently from a clinician I met at a conference. He had expressed interest in the Pew Research Center’s health and technology surveys and was now following up:
We are in the process of revising our patient forms and this may be a good time to add 1-2 questions that might best assess e-health utilization for the purposes of future data retrieval. Can you share examples of the questions I can use?
My reply is below, shared in the spirit of public Q&A so other people can contribute and we can learn together. Continue reading →
I filled out a form recently which asked: What motivates you to innovate? Without hesitation I typed in “Motherhood.” I had no idea that having kids would rewire my brain so fundamentally, but it did.
I’m re-sexifying the top of this post since it’s so long and I want people to get these key take-aways (read on for details on each one):
Expect clinical trial participants to share news with their networks. Plan accordingly.
Make your information attractive and share-able where people already are, on Facebook, Tumblr, Pinterest, etc.
Find your local Lady Gaga.
New Coke is a model for what not to do when engaging a community.
“Re-sexify” a repetitive message because there are some things you can never say enough.
Integrating a new social media tool is like having a new employee, it’s that much of a productivity hit.
I participated in the National Institutes of Health’s HIV/AIDS Clinical Trials Networks Communications Symposium on May 9, 2013, sharing Pew Research data about internet and cell phone use across the globe and, in particular, how people in the U.S. gather and share health information, online and offline.
My notes from the discussion are below, but I make no claims about them other than I wrote down stuff I was curious about or thought would have universal application: Continue reading →
