Guide patients to quality online food allergy resources to combat misinformation

Key takeaways:

• The need to decrease anxiety and worry drives people online for information.
• Misinformation can exacerbate unhelpful and maladaptive behaviors.
• Providers should actively address topics instead of avoiding them.

Life-impacting diagnoses often trigger intense quests for knowledge, especially for parents and caregivers. They will leave no stone unturned as they search for answers to questions such as “Why was my child diagnosed with a food allergy?”

It is no surprise, then, that this leaves parents and caregivers susceptible to inaccurate, unhelpful and even harmful information.

Motivations for information-seeking

What emotionally motivates those people who are managing allergic diagnoses to seek information? A common driver is the need to decrease anxiety and worry, not just about death, but also about quality-of-life burdens such as exclusion, bullying and navigating life experiences safely.

Tamara Hubbard

It is important to note that anxiety tends to increase perceptions of risk and decrease people’s beliefs that they are capable of effectively navigating distressing and dangerous situations.

In response to this, the mind, which I commonly refer to as the “threat-detector” and “safety-seeker,” encourages people to seek out strategies aimed at decreasing distress and steering clear of potential dangers. One of these strategies is gathering information.

Another motivation, particularly for parents and caregivers, can be to satisfy feelings of guilt. “Did my child develop a food allergy as a result of something I did or did not do?” they may ask themselves.

Or, they may ask, “What do I need to know to prevent the development of additional food allergies and asthma attacks from happening?” Then, they will tell themselves, “I need to ensure I never make a mistake that results in an allergic reaction or life-threatening asthma attack.”

Impacts of misinformation

These thoughts and emotions can lead to preoccupation with research focused on finding answers to questions that often cannot definitively be answered, as well as excessive time spent researching ways to 100% avoid risk. Therefore, the sources of information that patients utilize matter, as misinformation can exacerbate unhelpful and maladaptive behaviors.

As a licensed clinical professional counselor working with parents of children managing allergic diseases, I routinely explore health information sources with my patients.

When social media and online groups become their main or only sources for this information, many of my patients fall into comparison traps. (“I am not an effective allergy parent if I am not doing x, y, z.”) They also may fall into cognitive thinking traps such as overgeneralization: “What happened to that person is what will happen to me.”

This directly impacts not only their ability to find balance between their fears and quality of life, but also their ability to focus on crucial skill-building actions that cultivate competence and confidence in allergy management.

Benefits and risks of social media and online groups

The reality is that we need to meet our patients where they are, and that is online. A staggering 86% of internet users reported engaging in health-focused social media use, including participating in online support groups, watching health-related videos and receiving health information on social media.

Unfortunately, there is an abundance of misinformation grabbing people’s attention. Data presented at the 2023 American Academy of Allergy, Asthma and Immunology (AAAAI) Annual Meeting suggested that medically accurate asthma information is sparse on TikTok.

Therefore, we need to educate ourselves on the potential benefits and risks of the common information sources our patients utilize, two of which are social media and online groups. While they do offer potential benefits for allergic individuals and families, it is important that they (and we) also understand the potential risks of each.

One of the potential benefits of social media is that it can be a fun way of absorbing information. Children, adolescents and young adults also may be more willing to read information they find on social media.

However, there are potential risks, too. Information commonly shared by non-qualified sources may appear qualified. Also, people may not understand the differences in provider qualifications. Misinformation easily spreads to many people as well.

Online groups can cultivate a sense of community and help people feel less alone with their experiences. Plus, they can lead to friendships and mentorships within the allergy community. They can be thinktanks that offer creative problem-solving solutions and ideas, too.

Unfortunately, information in online groups tends to be anecdotal and not based on evidence. These groups also typically are not moderated or monitored by health care professionals. They can become echo chambers of inaccurate and unhelpful information as well. And, group dynamic and content themes can trigger increased anxiety and maladaptive behaviors, especially for those who are newly diagnosed.

Discuss, don’t avoid

The trust patients develop with their health care providers means that the information and recommendations we share have the potential to directly impact the health-related decisions they make.

As noted by allergist David R. Stukus, MD, FACAAI, who frequently presents on combating health misinformation, we should embrace the fact that we are a trusted resource, too.

Therefore, in service of helping patients develop a balanced approach to disease management, I recommend six strategies for directly addressing topics rather than avoiding them:

First, proactively discuss common misconceptions that likely are being shared online.

Second, ask open-ended questions via your intake paperwork or during appointments to explore what sources patients are using for allergic disease information.

Third, ask patients to assess how these sources of information impact their functioning and ability to find balance between anxiety and quality of life, with a question such as “Do you find that your mindset and anxiety levels are negatively impacted after you visit these information sources?”

Fourth, encourage mindful online information seeking, including identifying specific goals rather than searching these sources without purpose.

Fifth, encourage patients not to make major health management changes based on non-evidence-based and anecdotal information and to discuss them with you first.

Finally, develop a list of preferred, evidence-based online resources to distribute or house on your practice website, such as:

• The AAAAI's video library
• The AAAAI's Food Allergy Stages educational handouts
• The Allergy & Asthma Network’s TikTok channel
• The American College of Allergy, Asthma and Immunology (ACAAI) YouTube channel
• FARE’s monthly webinars
• Food Allergy Canada’s resources for teens
• The National Eczema Association’s Instagram feed

For more information:

Tamara Hubbard, MA, LCPC, can be reached at tamara@foodallergycounselor.com.