Open AccessPatients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts
Author(s) -
Jane K. Parker,
Chris Kelly,
Barry Smith,
Aidan F Kirkwood,
Claire Hopkins,
Simon Gane
Publication year - 2021
Publication title -
jmir formative research
Language(s) - English
Resource type - Journals
ISSN - 2561-326X
DOI - 10.2196/29086
Subject(s) - psychology , thematic analysis , olfaction , perception , stimulus (psychology) , anosmia , disgust , qualitative research , medicine , developmental psychology , clinical psychology , cognitive psychology , covid-19 , neuroscience , disease , pathology , infectious disease (medical specialty) , social science , anger , sociology
Background The impact of qualitative olfactory disorders is underestimated. Parosmia, the distorted perception of familiar odors, and phantosmia, the experience of odors in the absence of a stimulus, can arise following postinfectious anosmia, and the incidences of both have increased substantially since the outbreak of COVID-19. Objective The aims of this study are to explore the symptoms and sequalae of postinfectious olfactory dysfunction syndrome using unstructured and unsolicited threads from social media, and to articulate the perspectives and concerns of patients affected by these debilitating olfactory disorders. Methods A thematic analysis and content analysis of posts in the AbScent Parosmia and Phantosmia Support group on Facebook was conducted between June and December 2020. Results In this paper, we identify a novel symptom, olfactory perseveration, which is a triggered, identifiable, and usually unpleasant olfactory percept that persists in the absence of an ongoing stimulus. We also observe fluctuations in the intensity and duration of symptoms of parosmia, phantosmia, and olfactory perseveration. In addition, we identify a group of the most common items (coffee, meat, onion, and toothpaste) that trigger distortions; however, people have difficulty describing these distortions, using words associated with disgust and revulsion. The emotional aspect of living with qualitative olfactory dysfunction was evident and highlighted the detrimental impact on mental health. Conclusions Qualitative and unsolicited data acquired from social media has provided useful insights into the patient experience of parosmia and phantosmia, which can inform rehabilitation strategies and ongoing research into understanding the molecular triggers associated with parosmic distortions and research into patient benefit.