Tag Archives: caregiving

Quantifying Family Caregiving

Today’s post comes to us from our longtime friends and collaborators, Rajiv Mehta and Dawn Nafus. Read below to find out about an exciting new project they’re starting and a great Breakout Discussion they have planned for our QS15 Conference

What would it look like to take a “QS approach” to a major social and public health issue, like family caregiving? Caregiving has been the topic of a large array of survey studies, ethnographic studies, etc., but what might it mean to take a close look at the realities of caregiving activities through the first person lens that self-tracking affords?

We have been curious about this issue for a little while now, both as self-trackers curious about what it might be like to quantify the care work we ourselves do, and as researchers interested in care (Mehta) and self-tracking methods (Nafus) more broadly. We hope we can entice you to explore this topic with us in a variety of ways.  The two ways on top of our minds currently are the Breakout Session at QS15, and the Atlas of Caregiving Pilot project.

Breakout Session at QS15

Caregiving has been present as a theme from the beginning at QS. The first conference had a standing-room-only breakout session on tracking for chronic illnesses. At the third conference Yasmin Lucero gave an amazing talk about tracking her baby. In Amsterdam last year, another breakout focused on the human issues around family tracking. In June in San Francisco we want to dive deeper into how to track caregiving activities and the social implications of such tracking.

In this session, we’d like to think broadly about what counts as “care.” So many of us do not think about ourselves as “caregivers” and yet do a whole heck of a lot of it, some more short term than others.  We are curious about how care work affects your self-tracking practice. Does it make sense for you to track care activities explicitly, or does it make sense to track all the other things that are not about care for others, so that you can better care for yourself too?

We are also interested in the social ramifications of making these burdens explicit. Will your siblings be more supportive or empathetic if they really understood how much you’re putting into taking care of your mother? Will your mother feel even more guilty about all the trouble she’s causing you if she saw graphs of your troubles? In many kinds of self-tracking data, it is not just you implicated, though you might only do it for yourself. What are some good ways of negotiating the minefields data can sometimes open up?

Atlas of Caregiving Pilot

AoC_Symbol_3B

We’re not just talking … we’re doing! The “Atlas of Caregiving Pilot” project, supported by a grant from long-time friends of QS, the Robert Wood Johnson Foundation, will enable us to explore this further with our researcher hats on. Our interest is in leveraging QS tools, methods and mindsets. We are less interested in allowing traditional healthcare and academic experts to frame what should and should not be of interest, and more concerned with ensuring caregivers themselves have the opportunity to say what is and is not important about their experiences. Ultimately, these are their stories, not ours, and the pilot is exploring ways that we can help people reflect on, and tell, their stories through QS-style numbers. We are also exploring what new insights are possible by leveraging self-tracking technologies, especially what can we learn about the activities and burdens of care. In practice, this means we’ll be combining qualitative and quantitative approaches; we’ll be encouraging self-reflection; we’ll be emphasizing the individuals (families) and not just the group (population); and we’ll emphasize learning from the uniqueness and variety of family situations. Read more about the project at Atlas of Caregiving.

We would love to hear from you, with suggestions on what to track, technologies to use, and war stories of what not to do. And if you want to to collaborate, contact Rajiv at rajiv@bhageera.com.

Join Rajiv, Dawn, and an amazing group of individuals at our QS15 Conference & Exposition. Register Now!

 

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QSEU14 Breakout: Families and Self-tracking

Today’s post comes to use from our friend and co-organizer of the Bay Area QS meetup group, Rajiv Mehta. Rajiv and Dawn Nafus worked together to lead a breakout session that focused on self-tracking in the family setting at the 2014 Quantified Self Europe Conference. They focused on the role families have in the caregiving process and how self-tracking can be used in caregiving situations. This breakout was especially interesting to us because of the recent research that has shed a light on caregivers and caregiving in the United States. According to research by the Pew Internet and Life Project, “39% of U.S. adults are caregivers and many navigate health care with the help of technology.” Furthermore, caregivers are more likely to track their own health indicators, such as weight, diet and exercise. We invite you to read the description of the breakout session below and then join the conversation on the forum.

Families & Self-Tracking
by Rajiv Mehta

In this breakout session at the Amsterdam conference, we explored self-tracking in the context of family caregiving. In the spirit of QS, we decided to “flip the conversation” — instead of talking about “them”, about how to get elderly family members to use self-tracking technologies and to allow us to see their data, we talked about “us”, about our own self-tracking and the benefits and challenges we have experienced in sharing our data with family and friends. These are the key themes that emerged.

Share But Not Be Judged
Feeling like you’re being judged, and especially misjudged, by someone else seeing your data is a very negative experience. People want to feel supported, not criticized, when they open up. Ironically, people felt that reminders and “encouragement” by an app, knowing that it is based on some impersonal algorithm, was sometimes easier to accept than similar statements from family. The interactions we have with family members aren’t neutral “reminders” to do this or that; they’re loaded with years of history and subtext. One participant commented “What I really want is an app that trains a spouse how not to judge.”

Earn The Right
So much is about learning how to earn the right to say something—that’s an ongoing negotiation, and both people and machines have to earn this. Apps screw it up when they try to be overfamiliar, your “friend.” I recalled a talk from the 2013 QS Amsterdam conference of a person publicly sharing his continuous heart rate monitoring, whose boss had noticed that the person’s heart rate had not gone up and demanded to know why he was not taking a deadline seriously! Such misjudgments can kill one’s enthusiasm for sharing.

Myth Of Self-Empowerment
Just because you’re tracking something, and plan to stick to some regimen or make some behavioral change, doesn’t mean you’re actually empowered to make it so. Family members need to be sensitive to the fact that bad data (undesirable results, lack of entries, etc.) may be a “cry for help” rather than an occasion for nagging.

Facilitating Dialog and Understanding
On the positive side, sharing data can lead to more understanding and richer conversations amongst family members. One participant described his occasional dieting efforts, which he records using MyFitnessPal and shares the information with his mother. This allows her to see how he is able to construct meals that fit the diet parameters (and so learn from his efforts), and also to just know that he is eating okay. I described the situation of a friend with a serious chronic disease who was tracking her energy levels throughout the day. In considering whether or not to share this tracking with her family she realized that they had very little appreciation of how up-and-down each day is for her. So, before she’s going to get benefits from sharing continuous energy data, she’s going to have to help her family understand the realities of her condition.

Sense of Control
Everyone felt that one key issue was that the self-tracker feel that s/he is the one making the decision to share the data, and has control over what to share, when to share, and who to share with.

We hope that before people design and deploy “remote monitoring” or “home tele-health” systems to track “others”, they first take the time to share their own data and see what it feels like.

If you’re interested in reading further about technology and caregiving we suggest the recently published report from the National Alliance for Caregiving, “Catalyzing Technology to Support Family Caregiving” by Richard Adler and Rajiv Mehta.

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Conference Preview: Discussing Families & Self-Tracking

Last June, the Pew Internet Research Project released a report entitled, Family Caregivers are Wired for Health. The authors - Susannah Fox, Maeve Duggan and Kristen Purcell - found that 40% of Americans are caring for an adult or child with significant health issues. Of special interest to us: “When controlling for age, income, education, ethnicity, and good overall health, caregivers are more likely than other adults to… track their own weight, diet, exercise routine, or other health indicator.” (Emphasis added.)

Our Bay Area co-organizer Rajiv Mehta was a community peer reviewer of the survey. At the upcoming 2014 Quantified Self Europe Conference, Rajiv will co-lead a breakout with Dawn Nafus of Intel Labs on the role of families in self-tracking practice. If you are involved in or curious about family caregiving, you’re invited to come and take part in what will be a great discussion.

The QS Europe Conference is just a few weeks away; come if you can!

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Caring and Tracking

Earlier this year we discussed some very interesting research from the Pew Research Center’s Internet & American Life Project about the role of technology and the Internet in health and healthcare. We were lucky to have Susannah Fox, Associate Director at Pew,  talk to us a bit about what it means when 21% of people who track are using some form of technology. Of course, that conversation and that research spawned a few more questions and some interesting insights.

Today we’re looking at some brand new research results coming from Pew that are derived from that same research data set. This time Susannah and her team have focused on a particularly important set of individuals in the health and healthcare space: caregivers. In their recently released report, Family Caregivers are Wired for Health, they found that 39% of adults in the U.S. are caring for child or adult. So why talk about this here? What does that have to do with Quantified Self? Well, it turns out that the people who spend their time and energy caring for the health and wellbeing of others may actually be more engaged in tracking than their non-caregiving counterparts:

Tracking

  • 72% of caregivers track their health (weight, diet, exercise, blood pressure, sleep, etc.) while 63% of non-caregivers track their health.
  • 44% of caregivers who track say they track their most important indicator “in their heads” (non-caregivers = 53%).
  • 43% of caregivers who track say they track their most important indicator using paper (non-caregivers = 28%).
  • 31% of caregivers track the health of someone other than themselves.

“When controlling for age, income, education, ethnicity, and good overall health, being a caregiver increases the probability that someone will track a health indicator.”

Pew: Family Caregivers are Wired for Health

Pew: Family Caregivers are Wired for Health

Sharing

  • 41% of caregivers who track share their data with someone else (non-caregivers = 29%).

Impact

  • 52% of caregivers who track say it has changed their overall approach to maintaining their health or the health of someone for whom they provide care (non-caregivers = 41%).
  • 50% of caregivers who track say it has led them to ask a doctor new questions or to seek a second opinion (non-caregivers = 32%).
  • 44% of caregivers who track say it has affected a decision about how to treat an illness or condition (non-caregivers = 26%).

We asked our friend and fellow QS organizer, Rajiv Mehta to comment on this report. When he’s not helping organize our Bay Area QS Meetup, Rajiv has been working on exploring and understanding caregiving.

“Given the prevalence of caregiving (40% of adults) and that 30% of caregivers track something about the person they’re caring for, there’s a lot of opportunity for appropriate tracking and analysis tools. However, caregiving often involves tracking a wide variety of medications, biometrics, symptoms, etc., and design and developing appropriate tools is not easy. I recently wrote about my own experiences in “Self-Care and Caregiving Apps Development.” After all these years of QS meetups and conferences, I can only recall one talk of caregiver tracking (a mother tracking the progress of her baby). Hopefully we’ll see much more over time.”

Please take some time to read the full report and for the data savy, take a look at the preliminary survey data and see what you can find. We would love to hear your thoughts on this new report here in our comments or on our forum.

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The Inspiring Story of Sophia

Karen Herzog and Richard Sachs of Sophia’s Garden and Valley Design Group were the last to speak. They stood before a hushed audience at the last Bay Area QS Show&Tell, telling the incredible, moving story of their late daughter Sophia.

Sophia had Niemann-Pick Disease Type A, a rare lysosomal storage disease. Karen and Richard coordinated her care themselves, keeping detailed collaborative records of Sophia and even running their own n=1 clinical trial. The smooth functioning of Sophia’s extensive, international community of care and her very life depended on accurate documentation – one small thing that went wrong could mean that she would die.

Watch Sophia’s inspiring story below.

Karen Herzog and Richard Sachs – Sophia from Gary Wolf on Vimeo.

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