Online Forums Source of Empathy and Support for ALS and Other Patients, Study Says

Online Forums Source of Empathy and Support for ALS and Other Patients, Study Says

Online health forums offers patients with chronic diseases a way to share experiences and develop connections with others in a similar situation — gaining access to a community that can provide both empathy and support, a study shows.

How empathy might develop in online exchanges was the focus of  the study, “Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis),” published in the Journal of Medical Internet Research.  Researchers focused on two patient groups: those with breast cancer and those with  amyotrophic lateral sclerosis (ALS).

Patients have, for years now, congregated on online health forums to discuss their diseases. Their increasing availability is changing how patients connect with other patients, and support one another — with empathy being a crucial type of support.

Researchers looked at how empathy develops and operates within two online health forums operated by two U.K. charities: Breast Cancer Care and the Motor Neurone Disease Association, a group for ALS patients.

In this study, empathy is defined as “(1) knowing what the other person is feeling, (2) feeling what the other person is feeling, and (3) responding compassionately to another person’s distress.”

They analyzed forum posts and interviewed forum users. In total, they analyzed 84 threads from the breast cancer forum and 52 from the MND forum.

Their work showed that empathy develops in online forums through shared experiences and connections.

Empathy initially develops outside of the forum,  at the onset of illness — a transformative experience and creates emotional and informational needs, the study notes.

This void leads users to online forums, where they discover that they are not alone in their experiences. Rather, these experiences are shared and well-understood by others. This sets the empathetic and supportive tone of the forum.

“The forum was viewed as both a useful and meaningful space in which they [users] could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere,” the researchers wrote.

Similarities in experiences, relationships and feelings regarding a diagnosis were seen to be the basis of personal connections among forum users — leading to the development of empathy.

Researchers found that, upon forming connections based on the emotional understanding of a shared disease and its experiences, “empathic communication flourished.”

“Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges,” they wrote.

The researchers also note that it is important to provide and protect forum interactions as they encourage users to share experiences, which in turn helps patients with emotional well-being and resilience.

“Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support,” the team concluded.

One comment

  1. Charlie says:

    This ‘ you are not alone’ garbage keeps being regurgitated on a very regular basis, to the detriment of good reporting and to patient well-being.
    All pALS know that there are thousands of victims in a similar terminally vulnerable situation.

    pALS don’t care if you or I know, or pretend to know, how they feel. They want research to be successful in finding an effective treatment.

    As we today reach the Longest Day of the year we cannot fail to recognise that ALS research is having a disastrous 2018 with no significant breakthroughs anywhere amongst the labs. Every Phase 1 and 2 is a huge ‘shot in the dark’ with fingers firmly crossed.

    Research leaders should at least be honest with pALS and admit the truth.Then we can abandon silly distractions such as assuming breakthroughs could happen even this afternoon.
    This will allow us to focus on what really matters – creating powerful and long-lasting memories within family and friendship groups.

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