I never realised that I don’t breathe correctly’: understanding experiences of postural tachycardia syndrome and the challenges of altered breathing for intervention development

Hogg, Mitchell James (2022) I never realised that I don’t breathe correctly’: understanding experiences of postural tachycardia syndrome and the challenges of altered breathing for intervention development. Doctoral thesis, Northumbria University.

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Abstract

Background: I aimed to develop an Ocean Breathing intervention for Postural Tachycardia Syndrome [PoTS], a debilitating condition characterised by an increase in standing heart rate (>30bpm). Few interventions exist for supporting patients with their day-to-day symptom management.

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 NPT.

Findings: 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: This thesis provides critical insights into people living with PoTS’ communication and sense-making. It highlights how the 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. The further the efforts to untangle others’ Ocean Breath perceptions, the more questions were left about my own understandings of the intervention I was developing. To accommodate these issues and the multiple ways breathwork could impact people with PoTS, a ‘toolkit-like’ strategy with a range of breath-related practices should be explored.

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