"In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis
Abstract Background Dyspnea conveys an upsetting or distressing experience of breathing awareness. It heavily weighs on chronic respiratory disease patients, particularly when it persists despite maximal treatment of causative abnormalities. The physical, psychological and social impacts of persiste...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-01-01
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| Series: | Respiratory Research |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12931-023-02655-4 |
| _version_ | 1797362911744622592 |
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| author | Jonathan Dedonder Christelle Gelgon Antoine Guerder Nathalie Nion Sophie Lavault Capucine Morélot-Panzini Jésus Gonzalez-Bermejo Laelia Benoit Thomas Similowski Laure Serresse |
| author_facet | Jonathan Dedonder Christelle Gelgon Antoine Guerder Nathalie Nion Sophie Lavault Capucine Morélot-Panzini Jésus Gonzalez-Bermejo Laelia Benoit Thomas Similowski Laure Serresse |
| author_sort | Jonathan Dedonder |
| collection | DOAJ |
| description | Abstract Background Dyspnea conveys an upsetting or distressing experience of breathing awareness. It heavily weighs on chronic respiratory disease patients, particularly when it persists despite maximal treatment of causative abnormalities. The physical, psychological and social impacts of persistent dyspnea are ill-appreciated by others. This invisibility constitutes a social barrier and impedes access to care. This study aimed to better understand dyspnea invisibility in patients with chronic obstructive pulmonary disease (COPD) through quantitative discourse analysis. Methods We conducted a lexicometric analysis (lemmatization, descending hierarchical classification, multicomponent analysis, similarity analysis) of 11 patients' discourses (6 men, severe COPD; immediate postexacerbation rehabilitation) to identify semantic classes and communities, which we then confronted with themes previously identified using interpretative phenomenological analysis (IPA). Results Class#1 ("experience and need for better understanding"; 38.9% of semantic forms, 50% of patients) illustrates the gap that patients perceive between their experience and what others see, confirming the importance of dyspnea invisibility in patients' concerns. Class#2 ("limitations"; 28.7% of forms) and Class#3 (management"; 13.1% of forms) point to the weight of daily limitations in performing basic activities, of the need to accept or adapt to the constraints of the disease. These three classes matched previously identified IPA-derived themes. Class#4 ("hospitalization"; 18.2% of forms) points to the importance of interactions with the hospital, especially during exacerbations, which constitutes novel information. Conclusions Lexicometry confirms the importance of dyspnea invisibility as a burden to COPD patients. |
| first_indexed | 2024-03-08T16:14:14Z |
| format | Article |
| id | doaj.art-4e85f68df618490b9f50c90eb17f80c7 |
| institution | Directory Open Access Journal |
| issn | 1465-993X |
| language | English |
| last_indexed | 2024-03-08T16:14:14Z |
| publishDate | 2024-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Respiratory Research |
| spelling | doaj.art-4e85f68df618490b9f50c90eb17f80c72024-01-07T12:41:17ZengBMCRespiratory Research1465-993X2024-01-0125111010.1186/s12931-023-02655-4"In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysisJonathan Dedonder0Christelle Gelgon1Antoine Guerder2Nathalie Nion3Sophie Lavault4Capucine Morélot-Panzini5Jésus Gonzalez-Bermejo6Laelia Benoit7Thomas Similowski8Laure Serresse9Institute for the Analysis of Change in Contemporary and Historical Societies (IACS), Université Catholique de LouvainUnité Mobile d’accompagnement et de Soins Palliatifs, AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, Hôpital Pitié-SalpêtrièreService de Médecine de Réadaptation Respiratoire, Département R3S, AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, Hôpital Pitié-SalpêtrièreDépartement R3S, AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, Hôpital Pitié-SalpêtrièreService de Pneumologie, Département R3S, AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, Hôpital Pitié-SalpêtrièreSorbonne Université, INSERM, UMRS1158 Neurophysiologie Respiratoire Expérimentale et CliniqueService de Médecine de Réadaptation Respiratoire, Département R3S, AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, Hôpital Pitié-SalpêtrièreChild Study Center, QUALab Qualitative and Mixed Methods Lab, Yale School of MedicineDépartement R3S, AP-HP, Groupe Hospitalier Universitaire APHP-Sorbonne Université, Hôpital Pitié-SalpêtrièreSorbonne Université, INSERM, UMRS1158 Neurophysiologie Respiratoire Expérimentale et CliniqueAbstract Background Dyspnea conveys an upsetting or distressing experience of breathing awareness. It heavily weighs on chronic respiratory disease patients, particularly when it persists despite maximal treatment of causative abnormalities. The physical, psychological and social impacts of persistent dyspnea are ill-appreciated by others. This invisibility constitutes a social barrier and impedes access to care. This study aimed to better understand dyspnea invisibility in patients with chronic obstructive pulmonary disease (COPD) through quantitative discourse analysis. Methods We conducted a lexicometric analysis (lemmatization, descending hierarchical classification, multicomponent analysis, similarity analysis) of 11 patients' discourses (6 men, severe COPD; immediate postexacerbation rehabilitation) to identify semantic classes and communities, which we then confronted with themes previously identified using interpretative phenomenological analysis (IPA). Results Class#1 ("experience and need for better understanding"; 38.9% of semantic forms, 50% of patients) illustrates the gap that patients perceive between their experience and what others see, confirming the importance of dyspnea invisibility in patients' concerns. Class#2 ("limitations"; 28.7% of forms) and Class#3 (management"; 13.1% of forms) point to the weight of daily limitations in performing basic activities, of the need to accept or adapt to the constraints of the disease. These three classes matched previously identified IPA-derived themes. Class#4 ("hospitalization"; 18.2% of forms) points to the importance of interactions with the hospital, especially during exacerbations, which constitutes novel information. Conclusions Lexicometry confirms the importance of dyspnea invisibility as a burden to COPD patients.https://doi.org/10.1186/s12931-023-02655-4BreathlessnessDyspneaDyspnea invisibilityChronic obstructive pulmonary diseasePulmonary rehabilitationIntegrative medicine |
| spellingShingle | Jonathan Dedonder Christelle Gelgon Antoine Guerder Nathalie Nion Sophie Lavault Capucine Morélot-Panzini Jésus Gonzalez-Bermejo Laelia Benoit Thomas Similowski Laure Serresse "In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis Respiratory Research Breathlessness Dyspnea Dyspnea invisibility Chronic obstructive pulmonary disease Pulmonary rehabilitation Integrative medicine |
| title | "In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis |
| title_full | "In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis |
| title_fullStr | "In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis |
| title_full_unstemmed | "In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis |
| title_short | "In their own words": delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis |
| title_sort | in their own words delineating the contours of dyspnea invisibility in patients with advanced chronic obstructive pulmonary disease from quantitative discourse analysis |
| topic | Breathlessness Dyspnea Dyspnea invisibility Chronic obstructive pulmonary disease Pulmonary rehabilitation Integrative medicine |
| url | https://doi.org/10.1186/s12931-023-02655-4 |
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