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P13 ‘I never realised that I don’t breathe correctly’: Understanding experiences of postural tachycardia syndrome and the challenges of altered breathing for intervention development
  1. Mitchell Hogg1,
  2. Tim Rapley2,
  3. Vincent Deary3,
  4. Julia Newton4
  1. 1Department of Social Work, Education and Community Wellbeing, Northumbria University, Newcastle Upon Tyne, UK
  2. 2Department of Social Work, Education and Community Wellbeing, Northumbria University, Newcastle Upon Tyne, UK
  3. 3Department of Psychology, Northumbria University, Newcastle Upon Tyne, UK
  4. 4Population Health Science Institute, Medical School, Newcastle University, Newcastle Upon Tyne, UK


Background Postural Tachycardia Syndrome [PoTS] is a debilitating chronic illness characterised by a rapid increase in heart rate of >30bpm upon standing. Given that only a handful of treatments exist for supporting patients with their day-to-day PoTS management of their condition, the current project aimed to develop an Ocean Breathing intervention for Postural Tachycardia Syndrome [PoTS]

Methods A mixed-methods intervention development process. A scoping review of the PoTS literature was undertaken to examine the breadth of published works dedicated to diagnosis, symptomology and treatment. Narrative analysis of 20 online video diagnostic stories from people with PoTS was then undertaken to examine their diagnostic and symptom experiences. Finally, interviews across three key stakeholder groups- people with PoTS (n=15), healthcare professionals experienced in PoTS treatment (n=7), and yoga instructors (n=3)– were held to collate feedback on the Ocean Breathing intervention, as analysed through Reflexive Thematic Analysis and Normalization Process Theory.

Results Review findings demonstrated that a paucity of qualitative literature within this research field had led to limited exploration of people with PoTS’ day-to-day challenges with PoTS symptoms. The YouTube work identified that storytellers communicated their understandings of their PoTS to others by drawing upon socio-medical ontologies- surrounding the autonomic nervous system- to legitimise the nature of their symptom experiences. Stakeholder feedback showed how alterations in patients’ regular breathing patterns presented difficulties for identifying an agreed, ‘right’ intervention format. Notably, understandings of how to make sense of the potential therapeutic effects of Ocean Breathing on PoTS symptoms varied within and across the stakeholders, as they drew on alternate, differing ontological frameworks.

Conclusion Our research provide critical insights into people living with PoTS’ communication and sense-making. It highlights how PoTS symptom discussion between individuals with PoTS and medical practitioners- through a shared autonomic framework- can enable patients’ illness experiences to be validated across healthcare contexts. Through the intervention development work, the perceived complexity of the Ocean Breath was a barrier to the diverse, patterns of breathing exhibited by people with PoTS. To accommodate these issues and the multiple ways breath-work could impact people with PoTS, a ‘toolkit-like’ strategy with a range of breath-related practices should be explored.

  • Postural Tachycardia Syndrome
  • Breathing Intervention
  • Mixed-Methods

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