April 16, 2021, by School of Medicine
50 at 50: Coping with Illness in the Digital Era: The Role of Online Peer Support
It was back in 2003 when my academic career took an unexpected turn. Everything was ticking along very nicely when I started to notice some odd symptoms. Like many people, I thought nothing of it and continued about my day-to-day business. However, things quickly deteriorated and soon I had become really very ill. Whilst those around me were shocked at how poorly I had become (and so quickly), I was relatively unconcerned. I firmly believed that things would quickly resolve, and I would be back on my feet in no time. Oh, how wrong I was! Little did I know that I would be ill for around 4 years and recovery would be very slow.
It was during those darker days when I found myself spending a lot of time at home that I first went online to see if I could find out what was happening to me. I had a need to ‘make sense’ of it all. Despite repeated visits to the GP no diagnosis was forthcoming. I recall the first time I typed various symptoms I was experiencing into a search engine. I was initially shocked and anxious by the various possible explanations which may explain my ongoing struggle to ‘get better’. Many of them sounded absolutely horrific and to say that my anxiety levels were elevated would be a gross understatement!!! However, amidst all the doom and gloom I noticed some discussion forums (i.e. people posting messages to each other) where people were seemingly talking about the very symptoms that I was experiencing. This was a revelation. I had never seen this sort of online interaction before, and I read each story with interest and eventually (several weeks later) posted my own story.
Thankfully my health continued to improve but this illness experience had a profound and transformative impact on my life, my career and my values. You see, what I had stumbled across during the wee small hours was an online community of people experiencing similar things to myself, who were reaching out to support one another. This was – to coin a phrase – online peer support in action!!
Upon my return to work, I quickly searched online for research studies so that I could learn more about how people come together online to support each other during times of ill health. I found one study from 1999 which explored how people living with disability supported each other but very little else. I knew at this point that I had to try and change that. It was clear to me – even back in 2003 – that the Internet was here to stay and would likely transform how people make sense of and manage periods of ill health. As it turns out, I wasn’t wrong. The Internet has radically changed the way in which we are able to cope with and self-manage long-term conditions.
So, in early 2004 (just before Facebook launched) I started to develop a new programme of research which would seek to explore how and why people use online peer support communities for long-term conditions. My attention in those early days focussed on understanding two things: i) how do community members support each other? ii) why do people engage with online peer support communities?
In order to address this first research question, I started to analyse the content of messages which had been posted by community members to these online communities. Opting to work with messages which were in the public domain (at that time there was next to no guidance on how to work in an ethical manner with such online content) I started to examine the social support processes which were evident. I published many studies using this approach and each had a similar finding – that is – emotional support and informational support were always the two most commonly identified types of support exchanged between members of these online communities. It didn’t matter what condition I was looking at – the findings were the same.
My other strand of research in these early years similarly used qualitative methods but also included large scale surveys. Together, the findings suggested that people were seeking support online for a number of reasons. People tended to lack sufficient support and/or understanding from their offline social networks. They often felt alone, isolated and had nobody to turn to. In addition, people who used these online communities for peer support told me how they often felt embarrassed or ashamed because of their condition and the online community was their only way to connect with ‘similar others’. For others, the convenience, anonymity and 24/7 nature of online peer support was attractive and underpinned their reasons to engage with them.
As time progressed and my programme of research developed, I turned to the question of benefit. That is to say, what was the benefit to members from engagement with online peer support communities. It was at this time that I started to take on more PhD students and together we started to explore these issues. It was also at this time that I started to receive more emails, letters and phone calls from a range of health professionals who had heard about my work. I recall hearing the same questions over and over – that is ‘Do they make any difference?’
Over subsequent years, I published a number of studies which started to identify, describe and summarise the lived experience of community members. It was evident that for those who continued to engage with online peer support communities, a number of potential benefits were experienced. These included: a reduced sense of loneliness and isolation, lower anxiety, distress and illness-related worry, reduced levels of maladaptive coping. In addition, our studies reported increased hope, optimism, self-care, self-efficacy, illness acceptance and understanding, confidence in self-management, and improvements in mood. In terms of relationships with health professionals, our work also indicated that online peer support communities also helped people living with long-term conditions take greater control of their health and felt more confident in medical consultations. They were places where individuals could seek advice on which questions to ask.
Whilst all of these findings were very encouraging, it also became clear that online peer support communities were not without their limitations. Our studies picked up a number of potential issues which could negatively impact on those individuals who engage with them. One such example is that of negative content – that is, for some individuals reading about other people’s illness experiences could be a very difficult thing to do. Indeed, we know that people tend to post more messages to these online communities during difficult times (e.g. symptom flare-ups). What this means for those who use them is that they may encounter a large volume of content which documents very difficult and stressful times. However, I don’t want you to think that it is all bad. Far from it, many online communities recognise that people need to share difficult stories, but they also make room for stories of recovery, hope and survivorship.
So where are we now? It is 2021 and I have continued to develop more and more robust and sophisticated research designs to explore in greater detail how online peer support can impact on those individuals living with long-term conditions. The weight of evidence points to these communities having a clear and distinct potential benefit (though acknowledging some limited risks). Indeed, we now see many online peer support platforms being ‘prescribed’ by GPs and other healthcare professionals. None of this would be possible without the research efforts of scholars around the world who have carefully examined the risks and benefits of online peer support. I was all too happy to be part of this community of scholars and feel that I have played some small part in advancing the online peer support agenda.
So – as you will have no doubt seen from this blog – my research and career has been shaped by my own personal experience of ill health. Thankfully, I recovered and have been in excellent physical health ever since. However, that moment when I opened my laptop to search for answers was a defining moment both personally and professionally. Everything I have done since then from a research perspective has been driven by a need to help those living with long-term conditions. It has also shaped my core values – and whilst my work has been online – it has reinforced my belief that ‘It is good to talk’.
By Professor Neil Coulson, Professor of Health Psychology