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How EMS is impacted by in-home caregivers’ use of digital information

Technology, apps, and machines are essential for the sandwich generation caring for their ill parents and growing children


Editor's note: This is part 1 of a series on how technology is changing EMS and our encounters with patients

By Nick Nudell, MS, NRP

More than one in three patients you encounter living at home will be receiving care from a family member for chronic disease conditions. The burden of medical information and health care tasks for those family members can range from trivial to overwhelming, and may impact your ability to efficiently and effectively assess the patient.

Frequent family caregiver encounters

(Image http://www.sandwichgeneration.com)
(Image http://www.sandwichgeneration.com)

When I attended paramedic school more than 15years ago, the only time we really considered “family caregivers” was when discussing children with special health care needs. We learned that a small percentage of severely ill kids were cared for by their parents at home and to expect the patient’s mom to tell you everything about their special child.

We were reminded to listen for an indication that “something isn’t right” because mom knows their child better than anyone else. We imagined that meant we would find kids on ventilators, with feeding tubes, or with severe cognitive disabilities. Does that sound familiar?

Our perception about the frequency and type of patient receiving in-home family care was likely wrong then and is definitely wrong now. In 2010 the Pew Research Foundation found 30 percent of adults in the U.S. were caring for an adult or child with significant health issues.[1] By 2014 that number had risen to 39 percent, which totals roughly 93 million caregivers. In 2010 children made up only 5 percent of those being cared for in the home. That number has since grown to more than 8 percent.

Meet the Sandwich Generation

This phenomenon of middle-aged adults caring for both children (under age 18) and at least one aging parent, is known as the Sandwich Generation. These families currently make up 15 percent of our population.[2]

That figure does not include those also living with ‘boomerang generation’ children, the 29 percent of adults aged 25-to-34-years-old who have moved back in with their parents for an extended period of time.[3] Another nickname for this group is the 'Club Sandwich' generation.

Sandwich Generation is highly connected to digital information

Due to technological advancements, members of the Sandwich Generation (of which I am a part of) are likely to be highly connected consumers of digital information, especially compared to the Baby Boomers. Recent Pew Research found that Sandwich Generation caregivers rely significantly on this online data.

Although many of us did not grow up with technology, we’ve learned how to use it effectively, so much so that caregivers display what the Pew Research Center says is a “core social impact of the Internet: the ability to quickly gather information on a complex topic to make decisions.”

Sandwich Generation caregivers are more likely to get some or all of their health related information online as compared to non-caregivers in that:

  • 86 percent of caregivers have Internet access
  • 84 percent of caregivers with Internet access say they went online within the past year to research medical procedures, health insurance, and drug safety
  • 46 percent of caregivers reported going online to try to diagnose a medical condition they or someone else had
  • 7 percent used websites or apps to manage medications

Medical expertise by web browser and smartphone app

The digital connectivity of the Sandwich Generation presents new challenges for EMS providers responding to scenes (especially homes) with family caregivers. Whether the family caregiver is caring for a child with special health care needs, an aging adult, or both, they’re more likely to have done research before calling 911 than ever before. Any new information found then adds to what they already knew about the patient's ailments, which may be much more than the responders.

As a result, EMS providers need to be prepared to adapt to the situation, listen to the concerns of the caregiver, the complaints of the patient, and recognize the possibility that there is also potentially some mixture of Internet-based conjecture mixed in too.

Different modes for caregivers

It is important to consider the role that the Internet plays to be prepared for these situations. You may have already noticed that health care and social services information has become the ‘currency’ of family caregivers. As it turns out, caregivers need different health information at different points in time, depending on the phase of caregiving one is providing. In fact, mHealth consultant MaryAnne Sterling refers to this as the Caregiving Information Cycle. [4]

Caregiving Information Cycle (Image PCH Alliance)

Sterling suggests the everyday cycle involves tracking routine health ‘maintenance’ information such as medical records, prescription refills, dietary or nutritional needs, and doctor appointments. For many Sandwich Generation caregivers this also involves ‘care transition’ information such as in-home care and services, care plans, and medication administration. Unfortunately for many, it also involves periodic ‘crisis’ modes that involve test results, medication lists, insurance information, health care proxy forms, and diagnosis or disease information.

Information overwhelms caregivers

It is no surprise then that having access to this much information can overwhelm family caregivers. It sounds logical enough, and it is, but when you consider the magnitude of information to learn, memorize, keep track of, and manage; and then consider the other family members to also keep track of, being a family caregiver can become overwhelming.

Indeed, with all of these ‘data sources’ it is not difficult to imagine the necessity and usefulness of technologies and apps to help the Sandwich Generation care for their parents and children. What will these tools do? To start with, a family caregiver could outsource health decision-making, letting an app assist with or direct decisions that need to be made. This is something the Institute for the Future calls “cognitive off-loading.”[5]

Off-loading health care tasks to machines

As powerful computing tools become more accessible, many caregivers will manage their own personal well-being (or sanity) by off-loading various tasks and functions to machines. For instance, some will rely on apps to make their food choices as a way of sticking to diets. Others will off-load decision making to save time and ‘cognitive energy’ when there is too much information to sort through and choices are overwhelming. Some will even employ computers to take on social functions, and find companionship for themselves and for loved ones with apps.[5]

Saving the Sandwich Generation from the time spent just collecting and organizing data to make it useful, that cognitive off-loading, is a tremendous value proposition for technologists. Technology companies are developing more apps and capabilities for these caregivers; you’ve seen them on your own smartphones and elsewhere.

  • Health Mate
  • FitBit activity monitor and wireless scale
  • Azumio’s Instant Heart Rate
  • RxMindMe Prescription Reminder
  • AHA has Instant First Aid & CPR
  • MyFitnessPal has nutrition information & tracking for millions of recipes
  • UpToDate provides answers to clinical questions for paid subscribers
  • Epocrates provides information on medications
  • Amwell: Live Doctor Visit Now offers, you guessed it, app based doctor visits
  • iHeadache
  • Chronic Pain Tracker
  • My Baby’s Beat
  • iHealthTrax

Like you, caregivers and non-caregivers alike are increasingly more comfortable with having digital health technologies and are much more likely to use them with or without the help or benefit of physician involvement. In addition to helping our patient’s and their families keep track of health issues and information – they can help us as well.

Ask patients which apps and website they are using for health information

I challenge you to add a new question to your SAMPLE history questioning – ask if they have researched the problem online or via an app then if so, ask which apps or websites they used. Getting familiar with these tools and sites will enable you to develop a better rapport while providing the best care possible.

References

1. Family Caregivers are Wired for Health

2. The Sandwich Generation

3. The Boomerang Generation

4. What Family Caregivers Need from Health IT and the Health care System to be Effective Health Managers

5. Institute for the Future

About the Author

Nick Nudell, MS, NRP is an EMS and Information Systems consultant and partner for PrioriHealth Partners and is serving as the Project Manager for the National Association of State EMS Officials' EMS Performance Measures Initiative. He also serves as the data manager representative to the National EMS Advisory Council (NEMSAC) and as a founding board member of the Paramedic Foundation. Nick has a Bachelors in IT Management and a Masters in Information Security. He's been a licensed paramedic for 15 years in Glacier County Montana but has also worked in New Jersey, San Francisco, and at Burning Man in Nevada. Contact Nick at nick@priorihealth.com

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