A unique ethnography study in rare disease
Demonstrating how Postural Tachycardia Syndrome (PoTS), a chronic, multisystem disorder, impacts quality of life
During these extremely difficult times, many market research projects have been delayed, postponed, or canceled altogether. However, one unique project investigating the impact of living with Postural Tachycardia Syndrome (PoTS) has carried on regardless and recently came to a conclusion. PoTS is a chronic health condition that predominantly affects young women. It is a multi-system disorder that causes a wide range of symptoms that vary across patients and can be triggered by a multitude of factors. As such, PoTS can be difficult to manage and affects many different areas of a person’s life, such as their cognition, mobility and general well-being.
This study, which utilised digital ethnographic techniques to gain deep patient insights, is one of the only studies of its kind in PoTS. It is a collaboration initiated by Origins Insights, delivering the project for charity PoTS UK, and supported by trainee clinical psychologist Sam Waterman, from Royal Holloway, University of London.
The study used a longitudinal qualitative approach to look at two specific areas:
- the psychological impact of PoTS
- the functional impact of PoTS, including its impact on activities of daily living.
Focused digital ethnography with an unstructured approach to interviewing was used to collect data, through remote filming by participants over a few weeks, even continuing during the height of the COVID-19 pandemic. Data were immediately accessible to analysts, due to use of a centralised research platform, who utilised Interpretative Phenomenological Analysis (IPA) to deliver detailed examinations of personal lived experience.
So what were the findings? Four key themes emerged.
- Loss of control and lack of agency over their body, e.g. ‘Am I dying?’ – broad and intense impact of symptoms; ‘There will be days where I feel great and those days where I really don’t’ – fluctuating nature of PoTS
- Identity, e.g. ‘Can I not just be normal?’ – feeling different from others; PoTS ‘is part of my identity’ – accepting PoTS into their identity
- Lack of understanding from others, e.g. ‘You’ll be fine in a minute’ – others not understanding impact of PoTS; ‘There’s more to life than staying alive’ – medical professionals not understanding PoTS
- Adapting to cope with PoTS, e.g. ‘Planning my life around PoTS now’ – coping strategies.
Many of these are common challenges across rare diseases, but the power of the methodology came with the audio-visual data provided by participants. This data illustrates the patients’ emotive insights and, moving forward, will be utilised by PoTS UK to inform educational, communications, and digital support services across stakeholders for many years to come.
The value that this methodology brings
“Working with Origins has been such an eye-opener. The deliverables exceeded expectations, but so did the process. Not only has this collaboration enabled us to identify some very meaningful unmet needs amongst our service users, a structure around how to understand the subtleties of these and an indication of how to meet them better; I have also had an insight into how a professional organisation operates. The whole team has been informed, efficient, creative and streamlined – as well as accessible and good natured. The Origins team are also going above and beyond by pointing us in the direction of how to get started in the next phase of how to operationalise these findings in creative ways, such an app, structured by the results. They have made the complex intelligible, and navigated all with warmth and genuineness, and are interested in creating a rich and useful outcome, not just in ‘ticking boxes’. It has felt a very supportive and authentic shared-approach.
In all, it has been an easy, efficient and illuminating process, and I can wholeheartedly recommend both the process and the team”