Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts
BackgroundThe 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 i...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2021-12-01
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| Series: | JMIR Formative Research |
| Online Access: | https://formative.jmir.org/2021/12/e29086 |
| _version_ | 1797735489667596288 |
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| author | Jane K Parker Christine E Kelly Barry C Smith Aidan F Kirkwood Claire Hopkins Simon Gane |
| author_facet | Jane K Parker Christine E Kelly Barry C Smith Aidan F Kirkwood Claire Hopkins Simon Gane |
| author_sort | Jane K Parker |
| collection | DOAJ |
| description |
BackgroundThe 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.
ObjectiveThe 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.
MethodsA thematic analysis and content analysis of posts in the AbScent Parosmia and Phantosmia Support group on Facebook was conducted between June and December 2020.
ResultsIn 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.
ConclusionsQualitative 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. |
| first_indexed | 2024-03-12T12:59:46Z |
| format | Article |
| id | doaj.art-b070819cb12d4be3962fd6f5c77b682b |
| institution | Directory Open Access Journal |
| issn | 2561-326X |
| language | English |
| last_indexed | 2024-03-12T12:59:46Z |
| publishDate | 2021-12-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Formative Research |
| spelling | doaj.art-b070819cb12d4be3962fd6f5c77b682b2023-08-28T20:00:42ZengJMIR PublicationsJMIR Formative Research2561-326X2021-12-01512e2908610.2196/29086Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media PostsJane K Parkerhttps://orcid.org/0000-0003-4121-5481Christine E Kellyhttps://orcid.org/0000-0002-4476-3208Barry C Smithhttps://orcid.org/0000-0002-8345-7633Aidan F Kirkwoodhttps://orcid.org/0000-0002-5263-3737Claire Hopkinshttps://orcid.org/0000-0003-3993-1569Simon Ganehttps://orcid.org/0000-0002-0356-8190 BackgroundThe 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. ObjectiveThe 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. MethodsA thematic analysis and content analysis of posts in the AbScent Parosmia and Phantosmia Support group on Facebook was conducted between June and December 2020. ResultsIn 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. ConclusionsQualitative 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.https://formative.jmir.org/2021/12/e29086 |
| spellingShingle | Jane K Parker Christine E Kelly Barry C Smith Aidan F Kirkwood Claire Hopkins Simon Gane Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts JMIR Formative Research |
| title | Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts |
| title_full | Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts |
| title_fullStr | Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts |
| title_full_unstemmed | Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts |
| title_short | Patients’ Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts |
| title_sort | patients perspectives on qualitative olfactory dysfunction thematic analysis of social media posts |
| url | https://formative.jmir.org/2021/12/e29086 |
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