Using Health-Related Social Media
On this Page
Many parents and caregivers use social media to find information and
advice and build relationships. Families of children with special health care needs
(aka CYSHCN) may find social media helpful in connecting with other families dealing
with similar issues or whose children have similar diagnoses. This page describes
ways of using social media safely and effectively, and avoiding common
problems.
Overview of Social Media
Social media platforms are used widely—a 2019 study found that well over
half of adults in the US use the most popular platforms, YouTube and Facebook. Many
social media users visit their favorite platforms one or more times per day
(Share of U.S. Adults Using Social Media (Pew)).
People use social media to interact with friends, family, businesses, and
celebrities, share photos, write reviews, and reply to others’ posts. Some
platforms, most notably Facebook, offer groups that allow people to come together
over shared interests such as gardening, pet ownership, and many more. A large
number of parenting groups can be found, including those focused on health-related
topics.
To use social media, a person must set up an account. Minimum information
for most accounts is:
- Username
- Password
- Phone number or email address
- Birthdate.
A platform’s terms of service usually include requirements such as using a
real name, etc., but enforcement is limited. Most platforms require that new users
are least 13 years of age, to comply with the Children’s Online Privacy Protection
Act (COPPA), but that is hard to
enforce.
Using Groups on Social Media
Many social media sites support “groups,” through which parents may find
answers to questions and connections with other parents to share challenges,
solutions, resources, and ideas in a supportive environment. Social media can offer
a virtual network with other parents and caregivers that might be reached when other
support is not available, like weekends or late at night.
It’s important to understand that these groups typically do not include
experts or professionals, such as health care providers. Information or advice
offered by group members should be verified, especially if it involves medications
or other treatments. Also, be aware of the possibility of “groupthink” (also called
confirmation bias) where group members reinforce their own beliefs regardless of
facts.
Many online groups are “moderated”—posts are reviewed either before they
“go live” or once they start getting responses—to prevent inappropriate messages.
Monitoring can also be used to prevent bullying or ganging up on an individual in a
group. Most groups restrict unauthorized sharing of group content outside of the
group, but there is little ability to prevent such rule-breaking. Make sure you read
the terms of service for any group you join, and watch to see how violations are
addressed.
Trustworthiness
Comparing Personal and Organization Accounts
Accounts can be run by businesses, organizations, or individuals. Some
platforms, such as Facebook, differentiate these types of accounts while others
have a similar interface for all account types. Understanding who is running a
social media account can help you understand the information shared. For
example, is it a for-profit organization promoting their product, an individual
sharing their experience about using the product, or a non-profit organization
sharing new information about various products?
It is also possible for people to create a fraudulent account or
misrepresent their credentials. Some platforms now offer a blue check mark next
to a username, indicating the platform has verified their identity. Another way
to verify an account is to check whether a business or organization links to
that account from their website, or, to reach out through a phone number or a
known contact.
Advertisements
Most social media platforms are free to the users and rely on ads to
make money. The ads are usually targeted to specific users based on demographic
factors and user history. Ad networks work across multiple platforms, so you may
see targeted ads on other sites—for example, ads on your social media for
products you looked at in an online shopping site. Many platforms allow you to
click on a box near the ad to see why you were targeted.
Some companies also pay power users (called influencers) to share
their product. These may be celebrities or individuals with a large following in
a key community. Platforms typically require influencers to indicate in the post
if it is sponsored or an ad, but compliance varies.
Monitoring Posts
Most platforms use artificial intelligence (AI) to look for posts that
don’t follow terms of use. They also allow users to choose types of content they
don’t want to see. These are usually screened by AI systems, but they don’t work
perfectly. Some platforms are having more content checked by people, but that is
usually only done if content reported by AI systems or by users.
General Privacy Tips
Privacy Settings
Social media platforms offer different levels of privacy and privacy
setting options change frequently. Typically, the default preferences provide
minimal privacy. Take the time to understand the privacy settings, select your
preferences, and recheck them periodically as platform changes may alter what
information is public. When joining groups, try to understand how the group
works and how group membership lists are shared. Some groups allow people
outside of the group to see member lists and most allow group members to see
member lists. This means that membership in a group could share information
about you with individuals you know outside of the social media
platform.
Limiting Information in Posts
Try to limit the personal information you post on social media,
especially information that could let others identify you or your family and
information you might use in passwords, secret questions, etc. Sharing
information like hometown, mother’s maiden name, and where you went to school
could allow people to steal passwords and commit other identity
theft.
Children may consider sharing information or photos to be a violation
of their privacy. Carefully consider what you share. You may also want to talk
to your children about what you post about them. Multiple news outlets have
reported on how upset children and teenagers have been to find out how much
their parents and older siblings had shared about them online.
Sharing personal information can also enable intentional or
unintentional discrimination against you or your children. For example, a
potential employer could find out about your child with special needs and not
hire you because they believe that you won’t be committed to the job. Children
could be subjected to bullying from classmates who find out private information
about their condition.
When sharing information, consider who can see it, how much you need
to share, and what type of information it makes sense to share. Keep in mind
that even when settings or group rules prohibit copying content, users who view
the information could copy or screenshot it.
General Posting Etiquette and Ownership
Content Etiquette
Consider all possible audiences for your posts—including family
members and even your own child. Be respectful and share only necessary
information.
Picture Etiquette
Post pictures that you are comfortable sharing publicly. Remember, you
may not know who will see the photo and that individuals may be able to
screenshot or download a photo. There have also been reports of social media
platforms using individuals’ photos and posts in advertisements. Before sharing
a photo of someone else’s child, get permission from that child’s parent or
guardian and, ideally, the child.
Self-Care Reminder
Take a break if you need one—the volume of information on social media can
be overwhelming. Some people find it hard to disconnect (sometimes called Fear Of
Missing Out or FOMO). Remember that it’s all right to take a few days away from
social media. You can also leave a group if you find it overwhelming, not helpful,
or feel moderators aren’t enforcing rules to make the community safe. You also
should not feel the need to respond to, or even read, every post in a group or on a
page.
Resources
Information & Support
For Parents and Patients
Social Networking Privacy: How to be Safe, Secure and Social (PRC)
Overview of concerns and tips for using social media safely; Privacy Rights Clearinghouse.
Authors & Reviewers
Initial publication: July 2014; last update/revision: September 2019
Current Authors and Reviewers:
Authors: | Lennea Bower, MA |
Mindy Tueller, MS, MCHES | |
Alfred N. Romeo, RN, PhD | |
Tina Persels |
Authoring history
2014: first version: Shena McAuliffe, MFAR; Gina Pola-MoneyR |
AAuthor;
CAContributing Author;
SASenior Author;
RReviewer