Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Why caregivers should care about digital backups

Naomi Cahn and Rev. Amy Ziettlow
Patient
June 2, 2013
Share
Tweet
Share

You’ve heard all of the advice about backing up your computer regularly, making sure that you have your passwords stored in a safe place, protecting yourself against digital identity theft, but what does that have to do with providing care for a person with special needs?

Let’s count the ways.

First: Resources. Much of the information you need is online, and your personalized data may be password-protected. Anyone who has ever been to the My Social Security website knows how easy it is to find out what you need to know on the site. There’s now even a special social security website available just for smartphone users. As a caregiver, you have most likely engaged in copious amounts of disease-specific research as well as caregiver networking, which leads to our next suggestion.

Second: Storage. You want a safe place to store all of that communication that you’ve had with all of the professionals, doctors, therapists, educators, fellow caregivers who are helping you and your loved one. You need to make sure that all of this information is accessible to you, and to someone else, in case something happens to you. People can set up computer files, organized by topic, on a computer or in the cloud for easy reference. You may even have created spreadsheets to track medications and the signs and symptoms of the disease. You may keep a digital log of all of the meetings you’ve had with the various professionals, including the questions you want answered, and the advice they have shared with you.

Third: Support. You can find and give much caregiving support online. In addition to connecting with communities and friends through Facebook, you may be using CaringBridges or a similar site to help you coordinate care and mobilize support from scheduling transportation to meals. Also, many caregivers also find simply living vicariously through the status updates, tweets, and Pinterest boards of their friends to be a supportive escape from the daily demands of caregiving.

Fourth: Communication. You may be using social media to let people know what’s going on in your lives. As you do so, remember that your own comfort level with sharing your personal story through digital media and your loved one’s may be different. While you might have been comfortable sharing your life’s ups and downs regularly on Facebook and Twitter, consider some of the precepts of general digital etiquette advice. Tell your story, but be careful about how much you tell about the personal details of your loved one.

And fifth: Legacy. If your loved one has her own digital accounts, you need to keep track of those and converse with your loved one about what they value and why: Specific digital pictures? Specific emails? Specific social media profiles? How does their digital footprint speak to the character of their life story?

Naomi Cahn is Harold H. Greene Professor of Law, George Washington University Law School. Amy Ziettlow is an affiliate scholar, Institute for American Values. This piece originally appeared at the Special Needs Alliance Blog.

Prev

Will patients trade human imperfection for computerized perfection?

June 2, 2013 Kevin 10
…
Next

Doctors should not be judged like resort hotels

June 2, 2013 Kevin 8
…

Tagged as: Facebook, Patients, Twitter

Post navigation

< Previous Post
Will patients trade human imperfection for computerized perfection?
Next Post >
Doctors should not be judged like resort hotels

ADVERTISEMENT

More by Naomi Cahn and Rev. Amy Ziettlow

  • What does managing a loved one’s digital legacy really look like?

    Naomi Cahn and Rev. Amy Ziettlow

More in Patient

  • AI’s role in streamlining colorectal cancer screening [PODCAST]

    The Podcast by KevinMD
  • There’s no one to drive your patient home

    Denise Reich
  • Dying is a selfish business

    Nancie Wiseman Attwater
  • A story of a good death

    Carol Ewig
  • We are warriors: doctors and patients

    Michele Luckenbaugh
  • Patient care is not a spectator sport

    Jim Sholler
  • Most Popular

  • Past Week

    • The elephant in the room: Why physician burnout is a relationship problem

      Tomi Mitchell, MD | Physician
    • ADHD and cannabis use: Navigating the diagnostic challenge

      Farid Sabet-Sharghi, MD | Conditions
    • Alex Pretti: a physician’s open letter defending his legacy

      Mousson Berrouet, DO | Physician
    • Difficult patients in medical history

      Joan Naidorf, DO | Physician
    • Why tele-critical care fails the sickest ICU patients

      Keith Corl, MD | Physician
    • True peace in medicine requires courage not silence [PODCAST]

      The Podcast by KevinMD | Podcast
  • Past 6 Months

    • Why patient trust in physicians is declining

      Mansi Kotwal, MD, MPH | Physician
    • Physician on-call compensation: the unpaid labor driving burnout

      Corinne Sundar Rao, MD | Physician
    • How environmental justice and health disparities connect to climate change

      Kaitlynn Esemaya, Alexis Thompson, Annique McLune, and Anamaria Ancheta | Policy
    • Will AI replace primary care physicians?

      P. Dileep Kumar, MD, MBA | Tech
    • A physician father on the Dobbs decision and reproductive rights

      Travis Walker, MD, MPH | Physician
    • Is tramadol really ineffective and risky?

      John A. Bumpus, PhD | Meds
  • Recent Posts

    • Leading with love: a physician’s guide to clarity and compassion

      Jessie Mahoney, MD | Physician
    • Why doctors ignore their own advice on hydration and health

      Amanda Shim, MD | Conditions
    • Low testosterone in men: a doctor’s guide to TRT safety

      Martina Ambardjieva, MD, PhD | Conditions
    • Agentic AI in medicine: the danger of automating the doctor

      Shiv K. Goel, MD | Tech
    • Uterine aging in IVF: Why the “soil” matters as much as the seed

      Oluyemisi Famuyiwa, MD | Conditions
    • Patient expectations in primary care: the structural mismatch

      Ronke Dosunmu, MD | Physician

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

Leave a Comment

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

ADVERTISEMENT

  • Most Popular

  • Past Week

    • The elephant in the room: Why physician burnout is a relationship problem

      Tomi Mitchell, MD | Physician
    • ADHD and cannabis use: Navigating the diagnostic challenge

      Farid Sabet-Sharghi, MD | Conditions
    • Alex Pretti: a physician’s open letter defending his legacy

      Mousson Berrouet, DO | Physician
    • Difficult patients in medical history

      Joan Naidorf, DO | Physician
    • Why tele-critical care fails the sickest ICU patients

      Keith Corl, MD | Physician
    • True peace in medicine requires courage not silence [PODCAST]

      The Podcast by KevinMD | Podcast
  • Past 6 Months

    • Why patient trust in physicians is declining

      Mansi Kotwal, MD, MPH | Physician
    • Physician on-call compensation: the unpaid labor driving burnout

      Corinne Sundar Rao, MD | Physician
    • How environmental justice and health disparities connect to climate change

      Kaitlynn Esemaya, Alexis Thompson, Annique McLune, and Anamaria Ancheta | Policy
    • Will AI replace primary care physicians?

      P. Dileep Kumar, MD, MBA | Tech
    • A physician father on the Dobbs decision and reproductive rights

      Travis Walker, MD, MPH | Physician
    • Is tramadol really ineffective and risky?

      John A. Bumpus, PhD | Meds
  • Recent Posts

    • Leading with love: a physician’s guide to clarity and compassion

      Jessie Mahoney, MD | Physician
    • Why doctors ignore their own advice on hydration and health

      Amanda Shim, MD | Conditions
    • Low testosterone in men: a doctor’s guide to TRT safety

      Martina Ambardjieva, MD, PhD | Conditions
    • Agentic AI in medicine: the danger of automating the doctor

      Shiv K. Goel, MD | Tech
    • Uterine aging in IVF: Why the “soil” matters as much as the seed

      Oluyemisi Famuyiwa, MD | Conditions
    • Patient expectations in primary care: the structural mismatch

      Ronke Dosunmu, MD | Physician

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Leave a Comment

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...