Living with a long term condition affects every minute of the day, every activity, and they require so much effort and planning to manage. A study on this came up with a marvellous infographic – a must see for health professionals to understand this burden.
I’m a huge fan of infographics and this has to be my all time favourite. It’s an enormous graphic requiring lots of zooming in to read it but at a glance it very effectively represents the enormity of what we face living with chronic ill health, regardless of the condition.
I originally came across this on ePatient Dave’s blog post Taxonomy of Burden – potent visualization of patient experience of illness & treatment. On receiving even more tasks from health professionals, ePatient Dave asks himself “Don’t they know I have a life? And I have to take care of my sick mother, too, and my car broke down, and…?” and I think of this infographic when my dentist asks at every appointment “Do you floss?”.
The infographic came out of the qualitative study Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions by Tran et al. 1,053 patients answered their online survey, and the things people listed were broken down into i) the tasks imposed on patients by their diseases and by their healthcare system; ii) factors exacerbating the burden of treatment; and iii) consequences of the burden e.g., poor adherence, financial burden, impact on professional, family, and social life, etc. The full open access paper was published in BMC Medicine and can be read at bit.ly/TaxonomyOfBurden.
The authors concluded that health professionals should keep in mind the need to minimise this burden through whole-person-centred care, rather than add further to it. So if you’re a health professional doling out management advice or medication regimens, take a look at how these seemingly small asks of yours fit into the bigger picture of what we deal with as people with long term conditions. It’s a full-time job, except we get no time off. None of it is optional and it’s all on top of the normal everyday tasks a healthy person has. This is the air we breathe as people with long term conditions.
So if you have a grumble about why a housebound patient isn’t at home to receive their medication delivery, why patients don’t think to order their repeat meds in plenty of time, why they turn up at one minute to closing time with a big prescription, or that they’ve got their priorities all wrong, think of this infographic!