Using Health-Related Social Media

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.
Some platforms ask for additional information and most have options for people to create more detailed profiles to share on the site, including information such as location, gender, marital status, etc.
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

Current Authors and Reviewers:
Authors: Lennea Bower, MA
Mindy Tueller, MS
Alfred N. Romeo, RN, PhD
Tina Persels
Reviewers: Shena McAuliffe, MFA
Gina Pola-Money