Mental health stigma on Twitter during COVID-19: service user perspectives

Georgie Hudson is a Research Assistant at the National Institute for Health and Care Research (NIHR) Maudsley Biomedical Research Centre. She recently co-authored a paper, in the Journal of Mental Health that analysed stigma on Twitter during the COVID-19 pandemic from the viewpoint of mental health service users. In this blog, she discusses the findings of her research, how best to study this complex concept and the way in which social media discussions around mental health changed during the pandemic.   

Approximately 1 in 4 people in England have a psychiatric condition but yet there is still a great deal of stigma around mental health conditions where sentiments can be disapproving, discriminatory and hurtful, reducing someone “from a whole and usual person to a tainted, discounted one”. This can involve negative views on people with mental health conditions or inaccurate stereotypes. It is important to get service user viewpoints on how they define stigma and what language they find harmful. It can be particularly frequent on social media, with Twitter being a common platform to discuss mental health in both a positive and negative light.

The importance of involving service users

Defining stigma is very personal and depends on factors like personal experiences and context. In previous research investigating the topic on Twitter it has been researchers who made the decision about whether a tweet is or is not considered to be stigmatising. We thought it was important to investigate whether people with lived experience of mental health conditions define this differently than researchers and to find ways of incorporating this knowledge into future initiatives to reduce its impact.

COVID-19 had a big effect on conversations about mental health. Due to the lockdowns across the UK, many more people experienced mental distress including loneliness, anxiety, insomnia and low mood. We wondered whether this increased the general public’s understanding of mental health problems and led to fewer negative views on Twitter. 

What did we do?

To look at rates of stigma on Twitter, we extracted almost 73,000 tweets that used mental health terms. We then gave 27 mental health service users 100 tweets each to rate as either stigmatising or not using their own personal definitions. After these, we ran four focus groups and asked the participants why they thought some tweets were hurtful and disapproving in how they referred to mental health and others were not. The groups also explored whether they thought COVID-19 had changed views on mental health conditions online.

We found that that mental health service users in the study thought 41 percent of tweets referring to mental health were stigmatising. This percentage is much higher than the figures from studies where it was researchers who had reviewed the posts (between three and 13 percent). This means that people with personal experience of mental health conditions consider many more tweets to be harmful than researchers, confirming the importance of involving people with mental health conditions in future research in this area. Without their contribution, research will not represent the views of the people it is trying to help.

Schizophrenia more stigmatised than other conditions

As part of our research, we investigated which mental health conditions were rated as stigmatising most often by our participants. This showed that more than three quarters of tweets about schizophrenia portrayed the condition negatively compared to less than a quarter of those about anxiety or depression.

When we asked the participants how they decided whether a tweet was stigmatising, we were not able to get a unified answer. Many thought it was difficult to define because of the influence of context and because different people had different opinions. For example some people thought that if someone was using potentially negative words to refer to themselves, as a way of reclaiming the language, then that was not stigmatising whereas other disagreed.

However there was complete agreement about some terms and words, for example it was agreed that the word “psycho” was stigmatising, regardless of intention or context. From conversations I’ve had with many people, both in the general public and those who work in mental health, lots of people are surprised by this, and think of “psycho” as is a common word people use about someone acting strange, and many do not even think of it as referring to mental health. As people with mental health conditions do find it upsetting, this reinforces the importance of considering your word choice all the time and the impact it can have on other people, even if you do not mean it offensively.

The impact of COVID-19

When we asked our participants about the impact of COVID-19, many seemed to think social media content had changed. They said that in Spring 2020, people used social media to voice support and that the mood was generally positive and uplifting. But as the lockdowns continued, often people used social media to voice their frustrations. There were lots of discussions about mental health as many people felt low and isolated, but many of our participants felt that this sympathy was reserved for people with less serious mental health conditions and those who had longer-term mental health conditions were excluded from the discussions. In another study we are currently working on, we are looking at how common these stigmatising words were on Twitter, and whether there was a quantitative difference from before and during COVID-19.

This is the first study to try to define mental health stigma on social media with service users. While we found that there is not a nice, neat way to define what is stigmatising, some words, particularly "psycho", were described as always upsetting to people with mental health conditions. Unfortunately, negative attitudes towards mental health are still rife on social media and despite COVID-19 generally raising awareness, this does not seem to have reduced it. In the future I hope that we can all think carefully about what we post on social media, and the impact it can have on others.

The paper ‘Investigating mental health service user views of stigma on Twitter during COVID-19: a mixed-methods study’ was published in the Journal of Mental Health.