'My brain & my heart don't communicate together': Exploring vloggers’ use of medical ontologies to share their symptom experiences with postural tachycardia syndrome Article Swipe
Mitchell Hogg
,
Vincent Deary
,
Julia L. Newton
,
Tim Rapley
·
YOU?
·
· 2023
· Open Access
·
· DOI: https://doi.org/10.31219/osf.io/dm6gc
YOU?
·
· 2023
· Open Access
·
· DOI: https://doi.org/10.31219/osf.io/dm6gc
Aim: Postural Tachycardia Syndrome (PoTS) is an autonomic nervous system condition characterised by heightened heart rate (increase of >30bpm for adults) upon standing. Whilst PoTS is associated with impaired daily functioning, burdensome fatigue and poor quality of life, little research has been undertaken to examine how patients attempt to share their debilitating, daily symptom experiences with others. The current study therefore employed narrative analysis to explore how people with PoTS communicated understandings of their chronic illness within the re-telling of their own diagnostic stories. Method: A purposeful sample of 20 YouTube vlogs, triangulated alongside semi-structured interviews of 15 people diagnosed with PoTS (Mean Age= 35.3, SD= 12.1), were coded through NVIVO. The conduct of narrative analysis was guided through the adoption of a performative approach (Meraz et al., 2019). Rigour was achieved through reflexive note generation, numerous team analysis discussions and data triangulation. Findings: Within their narratives, storytellers constructed and drew upon socio-medical frameworks- those surrounding the autonomic nervous system- to communicate understandings of their PoTS to others and to account for their widespread symptom experiences. Through these models, storytellers depicted experiencing symptoms as a heightened bodily awareness, through the portrayal of their PoTS as a perceived ‘disruption’ to their body’s unconscious pathways. Storytellers employed metaphors and personification to allocate blame towards their bodies for their disrupted daily functioning. Conclusion: The identification of the autonomic nervous system- as a common, patient-derived socio-medical ontology- ultimately serves as an effective explanatory model for researchers to utilise for the development of specific, new patient acceptable interventions for PoTS.
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Metadata
- Type
- preprint
- Language
- en
- Landing Page
- https://doi.org/10.31219/osf.io/dm6gc
- https://osf.io/dm6gc/download
- OA Status
- gold
- Related Works
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- OpenAlex ID
- https://openalex.org/W4386640529
All OpenAlex metadata
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- OpenAlex ID
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https://openalex.org/W4386640529Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.31219/osf.io/dm6gcDigital Object Identifier
- Title
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'My brain & my heart don't communicate together': Exploring vloggers’ use of medical ontologies to share their symptom experiences with postural tachycardia syndromeWork title
- Type
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preprintOpenAlex work type
- Language
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enPrimary language
- Publication year
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2023Year of publication
- Publication date
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2023-09-11Full publication date if available
- Authors
-
Mitchell Hogg, Vincent Deary, Julia L. Newton, Tim RapleyList of authors in order
- Landing page
-
https://doi.org/10.31219/osf.io/dm6gcPublisher landing page
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https://osf.io/dm6gc/downloadDirect link to full text PDF
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-
YesWhether a free full text is available
- OA status
-
goldOpen access status per OpenAlex
- OA URL
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https://osf.io/dm6gc/downloadDirect OA link when available
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Narrative, Reflexivity, Psychology, Rigour, Autonomic nervous system, Medicine, Social psychology, Heart rate, Sociology, Blood pressure, Internal medicine, Social science, Mathematics, Linguistics, Geometry, PhilosophyTop concepts (fields/topics) attached by OpenAlex
- Cited by
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0Total citation count in OpenAlex
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| abstract_inverted_index.chronic | 74 |
| abstract_inverted_index.common, | 229 |
| abstract_inverted_index.conduct | 112 |
| abstract_inverted_index.current | 58 |
| abstract_inverted_index.examine | 44 |
| abstract_inverted_index.explore | 65 |
| abstract_inverted_index.fatigue | 32 |
| abstract_inverted_index.illness | 75 |
| abstract_inverted_index.models, | 178 |
| abstract_inverted_index.nervous | 8, 158, 225 |
| abstract_inverted_index.others. | 56 |
| abstract_inverted_index.patient | 250 |
| abstract_inverted_index.quality | 35 |
| abstract_inverted_index.symptom | 53, 174 |
| abstract_inverted_index.system- | 159, 226 |
| abstract_inverted_index.through | 109, 118, 132, 188 |
| abstract_inverted_index.towards | 211 |
| abstract_inverted_index.utilise | 243 |
| abstract_inverted_index.Postural | 1 |
| abstract_inverted_index.Syndrome | 3 |
| abstract_inverted_index.achieved | 131 |
| abstract_inverted_index.adoption | 120 |
| abstract_inverted_index.allocate | 209 |
| abstract_inverted_index.analysis | 63, 115, 138 |
| abstract_inverted_index.approach | 124 |
| abstract_inverted_index.body’s | 200 |
| abstract_inverted_index.depicted | 180 |
| abstract_inverted_index.employed | 61, 204 |
| abstract_inverted_index.impaired | 28 |
| abstract_inverted_index.numerous | 136 |
| abstract_inverted_index.patients | 46 |
| abstract_inverted_index.research | 39 |
| abstract_inverted_index.stories. | 83 |
| abstract_inverted_index.symptoms | 182 |
| abstract_inverted_index.(increase | 16 |
| abstract_inverted_index.Findings: | 143 |
| abstract_inverted_index.alongside | 93 |
| abstract_inverted_index.autonomic | 7, 157, 224 |
| abstract_inverted_index.condition | 10 |
| abstract_inverted_index.diagnosed | 99 |
| abstract_inverted_index.disrupted | 216 |
| abstract_inverted_index.effective | 237 |
| abstract_inverted_index.metaphors | 205 |
| abstract_inverted_index.narrative | 62, 114 |
| abstract_inverted_index.ontology- | 232 |
| abstract_inverted_index.pathways. | 202 |
| abstract_inverted_index.perceived | 196 |
| abstract_inverted_index.portrayal | 190 |
| abstract_inverted_index.reflexive | 133 |
| abstract_inverted_index.specific, | 248 |
| abstract_inverted_index.standing. | 22 |
| abstract_inverted_index.therefore | 60 |
| abstract_inverted_index.acceptable | 251 |
| abstract_inverted_index.associated | 26 |
| abstract_inverted_index.awareness, | 187 |
| abstract_inverted_index.burdensome | 31 |
| abstract_inverted_index.diagnostic | 82 |
| abstract_inverted_index.heightened | 13, 185 |
| abstract_inverted_index.interviews | 95 |
| abstract_inverted_index.purposeful | 86 |
| abstract_inverted_index.re-telling | 78 |
| abstract_inverted_index.ultimately | 233 |
| abstract_inverted_index.undertaken | 42 |
| abstract_inverted_index.widespread | 173 |
| abstract_inverted_index.Conclusion: | 219 |
| abstract_inverted_index.Tachycardia | 2 |
| abstract_inverted_index.communicate | 161 |
| abstract_inverted_index.constructed | 148 |
| abstract_inverted_index.development | 246 |
| abstract_inverted_index.discussions | 139 |
| abstract_inverted_index.experiences | 54 |
| abstract_inverted_index.explanatory | 238 |
| abstract_inverted_index.frameworks- | 153 |
| abstract_inverted_index.generation, | 135 |
| abstract_inverted_index.narratives, | 146 |
| abstract_inverted_index.researchers | 241 |
| abstract_inverted_index.surrounding | 155 |
| abstract_inverted_index.unconscious | 201 |
| abstract_inverted_index.Storytellers | 203 |
| abstract_inverted_index.communicated | 70 |
| abstract_inverted_index.experiences. | 175 |
| abstract_inverted_index.experiencing | 181 |
| abstract_inverted_index.functioning, | 30 |
| abstract_inverted_index.functioning. | 218 |
| abstract_inverted_index.performative | 123 |
| abstract_inverted_index.storytellers | 147, 179 |
| abstract_inverted_index.triangulated | 92 |
| abstract_inverted_index.>30bpm | 18 |
| abstract_inverted_index.characterised | 11 |
| abstract_inverted_index.debilitating, | 51 |
| abstract_inverted_index.interventions | 252 |
| abstract_inverted_index.socio-medical | 152, 231 |
| abstract_inverted_index.identification | 221 |
| abstract_inverted_index.triangulation. | 142 |
| abstract_inverted_index.understandings | 71, 162 |
| abstract_inverted_index.patient-derived | 230 |
| abstract_inverted_index.personification | 207 |
| abstract_inverted_index.semi-structured | 94 |
| abstract_inverted_index.‘disruption’ | 197 |
| cited_by_percentile_year | |
| countries_distinct_count | 2 |
| institutions_distinct_count | 4 |
| sustainable_development_goals[0].id | https://metadata.un.org/sdg/1 |
| sustainable_development_goals[0].score | 0.75 |
| sustainable_development_goals[0].display_name | No poverty |
| citation_normalized_percentile.value | 0.28114254 |
| citation_normalized_percentile.is_in_top_1_percent | False |
| citation_normalized_percentile.is_in_top_10_percent | False |