For many people with osteoarthritis (OA), their beliefs about their condition and the way they manage it are strongly influenced by myths and misconceptions about OA, such as ‘exercise makes it worse’, ‘the pain is caused by wear and tear in the joint’ or ‘I need a joint replacement because my knee joint is bone on bone’. 

Pain researcher and physiotherapist Dr Felicity Braithwaite, who presented at the Australian Pain Society Annual Scientific Meeting during a session on the social side of pain, is looking at ways to change the narrative. 

Her research has focused on how to convince people that these misconceptions are not accurate. 

In her presentation at the Australian Pain Society conference, she talked about the use of narrative storytelling, specifically through videos featuring the stories of people living with OA. 

‘Stories are really memorable; they organise complex information into a coherent structure and they tap into our emotions as well. 

‘If you have an emotional response, you are going to code that information more strongly and retain it for longer,’ Felicity told the audience. 

‘We’re trying to challenge people’s misconceptions about a pain condition and if they’ve got a deeply held belief about their body, this can be a really nice way to challenge it in a non-threatening way.’ 

Felicity’s team is working on a conceptual and mechanistic model to test the ability of a compelling pain story to change a person’s pain journey. 

‘That pain story acts as a moment of change for that person… like a trigger for them to start to think differently about their own pain, maybe how to tackle the problem, and opening up some new possibilities for how they might be managing their condition.’ 

Using this model, she hopes to look at both short-term changes in the way they think about their pain, and longer-term effects like behavioural change, better engagement with healthcare and better self-management of pain, towards the ultimate goals of improved pain-related functioning, wellbeing and recovery. 

Her research has looked at various factors that can influence how well a story lands – for example, whether the story meets the listener where they are in their pain journey and if it addresses their baseline beliefs. 

Specific cultural beliefs and connections to local community are another factor. 

Finally, there are narrative and digital factors like authenticity, connection to the person sharing the information, immersion in the story, emotion and a coherent narrative structure. 

The team is making videos featuring members of their lived experience group, using a co-design process with both the individual in the video and the wider group. 

Early testing of one of the videos with consumers has been promising, said Felicity. 

The video, which was filmed on a phone, features ‘Mr Cookfulness’, who talks about his pain and how a focus on cooking and eating healthy food rather than on weight loss helped him to better manage his OA. 

The video story was compared to standard OA education videos in an online experiment. 

While Felicity is still analysing the feedback provided by the test group, she believes they are on the right track by focusing on stories of lived experience. 

‘They really liked how he spoke in an uncomplicated manner, using simple, patient-friendly language and describing strategies that he was using in a really feasible, doable way. 

‘We also had some people talking about how they had a mindset shift from watching this video, which really excites me as well about this conceptual model because that’s how we’re thinking it will work – watching that compelling video after being stuck in pain for a long time could start to trigger you to think a bit differently about your situation, giving you a new sense of control.’ 

Several aspects of making videos about lived experience need to be carefully considered, Felicity said. 

For example, strategies shown in the story need to be perceived as attainable, not out of reach to the intended audience. 

The stories are often deeply personal and potentially traumatic so the person telling their story needs to be well supported and ready to share. 

She noted that it is also important that the person telling the story retain genuine control over their narrative as an acknowledged co-author or a member of the research team and that their consent is ongoing throughout the entire process of drafting, filming, editing and sharing the video. 

The development process should also include representatives of the target audience to make sure the messages are hitting the intended mark. 

‘There’s something pretty special wrapped up in storytelling but we do need a rigorous mechanistic model to advance the science of storytelling in pain and an ethical framework as well.’