During the past 18 months researchers at the University of York (in collaboration with Good Things Foundation and University of Leeds) have had the privilege of speaking to people diagnosed with severe mental ill health (SMI), including schizophrenia, schizoaffective disorder and bipolar disorder, about digital experiences during the pandemic.
At the dawn of the pandemic, we were aware that people with SMI were likely at risk of digital exclusion, because we constantly consult and take advice on our work from people with lived experience of severe mental ill health. With life rapidly moving online during the pandemic restrictions, we did not know how this group of people would be specifically affected, how they would adapt to the changes (such as accessing services and socialising online) and if or how this might be connected to changes in their mental health or physical health.
Declining mental health was related to increased internet use in the people we surveyed, and we are currently asking our participants to tell us more about why this might be.
People answered our survey about access to the Internet, connection and devices, internet skills, online activities and barriers to using the Internet. They also told us about changes in mental and physical health.
Nearly two thirds of the people surveyed were non-users or limited users of the internet. People told us that this was due mainly to lack of interest or skills rather than not having devices or lack of access to WIFI or data.
During the pandemic restrictions, 5% of the UK population was offline compared to 40% of the people we spoke to. In addition, 85% of the general population reported feeling confident using the Internet compared to just 49% in our survey reporting good or outstanding knowledge about the Internet.
There is clearly a huge disparity between the people we surveyed and the population at large.
Older adults with schizophrenia or schizoaffective disorder were the most affected by this digital divide. We suspect that perhaps those who grew up before the advent of the internet and likely experienced disruption to their education (due to mental health issues in adolescence or early adulthood) may not have wanted or been presented with the opportunity to learn the necessary skills to engage digitally later in life.
Bipolar UK estimated in 2020 that 1 in 50 (2%) of people in the UK have bipolar disorder and NICE report 1.5% of the population have schizophrenia or related conditions. 3 or 4 in every 100 people fit the categories described in this study. If you were to travel on a full bus of randomly selected people (perhaps an unfamiliar experience for many of us in recent times!) 3 or 4 of those people would have a diagnosis of SMI.
This is no small number of people, and our research reveals a significant issue of concern to everyone. Everyone who is a human being, provides a service, has family, friends, a partner or neighbours. We can’t ignore the fact that the digital divide is a big issue in severe mental illness with the potential to lead to further disadvantage in an already disadvantaged population. Further research is needed and awareness is a responsibility for all of us.