CMH Affiliate and coordinator of the Durham Qualitative Health Research Group Sally Brown writes: On Thursday afternoon, the first half-day workshop organised by the Qualitative Health Research Group and the Evaluation, Research and Development Unit took place, on the topic “How do we better understand, and change, people’s behaviour in relation to symptoms?” Delegates from departments across Durham University, from as far afield as Denmark, Scotland and Canada, and from near neighbours at the University of Sunderland and James Cook Hospital in Middlesbrough, gathered to hear presentations from the perspectives of general practice, psychology, anthropology and medical humanities, and to discuss some of the challenges and issues around researching the kinds of things we might want to study if we are interested in symptoms, behaviour, and behaviour change.
Fiona Walters’ paper, presented by Greg Rubin, set the scene by outlining issues around early diagnosis, screening, and help seeking behaviour for cancer symptoms. Some theoretical models of explanations for patient delay were presented, although some of the discussion later critiqued the models for being too linear and not taking into account patient factors such as fear and embarrassment. The paper also considered how patients appraise their symptoms, my favourite example being a quote from a man who compared the seriousness of his symptoms to whether it was worse than his horse having colic.
Nicky Hall then gave us an overview of psychological perspectives about beliefs and behaviour around symptoms, how people appraise symptoms and decide what’s normal, and how people choose (or not) to adhere to treatment advice once they’ve been diagnosed with a long term condition. She also posed some interesting questions leading on from her discussion of behaviour change models, which was then picked up in the discussion session in terms of who decides which behaviours should be changed, and whether people actually want to change their behaviour.
Rikke Sand Andersen’s talk from an anthropological perspective about symptoms and the contextualised body took us through the work of Byron Good, Arthur Kleinman and Margaret Lock, and although I’m sure several people in the audience were familiar with their work, I’ve certainly got a whole load of new stuff on my reading list! The notion of “local biology” was certainly an interesting issue which was later hotly contested at our table discussion. Rikke’s presentation made an important point about delay in help seeking, which was about how people know what they should be considering as an “alarm” symptom? Do people have enough, or the right, information? The impact of the media, and of the internet, particularly where people google symptoms and seem to latch onto the most serious diagnosis which they then present to their GP, was picked up in the discussions that followed.
Martyn Evans then took us on a slightly different journey, considering objective and subjective ways of knowing and pointing out that the Humanities offer ways of understanding rather than instruction. I enjoyed his quotations about why we read – both to know that we are not alone, and because we cannot meet everybody – which led into some insights from literature about experiencing symptoms and illness. This raised a question about truth, and how do we know what’s true? Is literature more or less true than “fact”, because it’s fictional, or does it provide us with a different way of knowing?
Feedback from the discussion sessions that had been taking place during the afternoon allowed participants to comment on the presentations and suggest future directions for research – should we be investigating people’s views before they get diagnosed, or consider whether, and how, a diagnosis following an “alarm” symptom might alter someone’s behaviour? Why doesn’t a person who has been diagnosed with something serious, such as COPD, report the worsening of a symptom – because they’re normalising what to others wouldn’t be seen as normal?
Finally Rose Barbour managed the amazing feat of pulling together not only the key ideas from the speakers but also many of the issues raised by the discussion groups, and then gave some pointers for future research directions.
The day ended with drinks, canapés, and many promises of keeping in touch and meeting up again. Personally, I’m really looking forward to the BSA Medical Sociology conference in Chester in September, where not only will there be (at least) four representatives from Durham, but also our most far flung visitor today, Jeannie Shoveller from the University of British Columbia, Vancouver, will be joining us.
In conclusion, I’m shattered but it was worth it. Let’s do it all again (but not just yet).