Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research
BackgroundEarly detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis is important to quickly trigger treatment and reduce respiratory damage. An intervention was designed in the frame of the MucoExocet research study providing patients with cystic fibro...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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JMIR Publications
2024-01-01
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| Series: | JMIR Formative Research |
| Online Access: | https://formative.jmir.org/2024/1/e38064 |
| _version_ | 1797348292780097536 |
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| author | Maxime Morsa Amélie Perrin Valérie David Gilles Rault Enora Le Roux Corinne Alberti Rémi Gagnayre Dominique Pougheon Bertrand |
| author_facet | Maxime Morsa Amélie Perrin Valérie David Gilles Rault Enora Le Roux Corinne Alberti Rémi Gagnayre Dominique Pougheon Bertrand |
| author_sort | Maxime Morsa |
| collection | DOAJ |
| description |
BackgroundEarly detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis is important to quickly trigger treatment and reduce respiratory damage. An intervention was designed in the frame of the MucoExocet research study providing patients with cystic fibrosis with connected devices and educating them to detect and react to their early signs of PEx.
ObjectiveThis study aims to identify the contributions and conditions of home monitoring in relation to their care teams from the users’ point of view to detect PEx early and treat it. This study focused on the patients’ experiences as the first and main users of home monitoring.
MethodsA qualitative study was conducted to explore patients’ and professionals’ experiences with the intervention. We interviewed patients who completed the 2-year study using semistructured guides and conducted focus groups with the care teams. All the interviews were recorded and transcribed verbatim. Their educational material was collected. A grounded analysis was conducted by 2 researchers.
ResultsA total of 20 patients completed the study. Three main categories emerged from the patients’ verbatim transcripts and were also found in those of the professionals: (1) task technology fit, reflecting reliability, ease of use, accuracy of data, and support of the technology; (2) patient empowerment through technology, grouping patients’ learnings, validation of their perception of exacerbation, assessment of treatment efficacy, awareness of healthy behaviors, and ability to react to PEx signs in relation to their care team; (3) use, reflecting a continuous or intermittent use, the perceived usefulness balanced with cumbersome measurements, routinization and personalization of the measurement process, and the way data are shared with the care team. Furthermore, 3 relationships were highlighted between the categories that reflect the necessary conditions for patient empowerment through the use of technology.
ConclusionsWe discuss a theorization of the process of patient empowerment through the use of connected devices and call for further research to verify or amend it in the context of other technologies, illnesses, and care organizations.
Trial RegistrationClinicalTrials.gov NCT03304028; https://clinicaltrials.gov/ct2/show/results/NCT03304028 |
| first_indexed | 2024-03-08T12:02:38Z |
| format | Article |
| id | doaj.art-74e074b1afff4203bad90c60caf313fe |
| institution | Directory Open Access Journal |
| issn | 2561-326X |
| language | English |
| last_indexed | 2024-03-08T12:02:38Z |
| publishDate | 2024-01-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Formative Research |
| spelling | doaj.art-74e074b1afff4203bad90c60caf313fe2024-01-23T14:00:37ZengJMIR PublicationsJMIR Formative Research2561-326X2024-01-018e3806410.2196/38064Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative ResearchMaxime Morsahttps://orcid.org/0000-0003-2474-6395Amélie Perrinhttps://orcid.org/0000-0002-8922-5972Valérie Davidhttps://orcid.org/0000-0003-1995-5651Gilles Raulthttps://orcid.org/0000-0003-1901-7059Enora Le Rouxhttps://orcid.org/0000-0002-2238-7133Corinne Albertihttps://orcid.org/0000-0002-9336-1395Rémi Gagnayrehttps://orcid.org/0000-0002-8942-9713Dominique Pougheon Bertrandhttps://orcid.org/0000-0002-1241-2753 BackgroundEarly detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis is important to quickly trigger treatment and reduce respiratory damage. An intervention was designed in the frame of the MucoExocet research study providing patients with cystic fibrosis with connected devices and educating them to detect and react to their early signs of PEx. ObjectiveThis study aims to identify the contributions and conditions of home monitoring in relation to their care teams from the users’ point of view to detect PEx early and treat it. This study focused on the patients’ experiences as the first and main users of home monitoring. MethodsA qualitative study was conducted to explore patients’ and professionals’ experiences with the intervention. We interviewed patients who completed the 2-year study using semistructured guides and conducted focus groups with the care teams. All the interviews were recorded and transcribed verbatim. Their educational material was collected. A grounded analysis was conducted by 2 researchers. ResultsA total of 20 patients completed the study. Three main categories emerged from the patients’ verbatim transcripts and were also found in those of the professionals: (1) task technology fit, reflecting reliability, ease of use, accuracy of data, and support of the technology; (2) patient empowerment through technology, grouping patients’ learnings, validation of their perception of exacerbation, assessment of treatment efficacy, awareness of healthy behaviors, and ability to react to PEx signs in relation to their care team; (3) use, reflecting a continuous or intermittent use, the perceived usefulness balanced with cumbersome measurements, routinization and personalization of the measurement process, and the way data are shared with the care team. Furthermore, 3 relationships were highlighted between the categories that reflect the necessary conditions for patient empowerment through the use of technology. ConclusionsWe discuss a theorization of the process of patient empowerment through the use of connected devices and call for further research to verify or amend it in the context of other technologies, illnesses, and care organizations. Trial RegistrationClinicalTrials.gov NCT03304028; https://clinicaltrials.gov/ct2/show/results/NCT03304028https://formative.jmir.org/2024/1/e38064 |
| spellingShingle | Maxime Morsa Amélie Perrin Valérie David Gilles Rault Enora Le Roux Corinne Alberti Rémi Gagnayre Dominique Pougheon Bertrand Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research JMIR Formative Research |
| title | Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research |
| title_full | Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research |
| title_fullStr | Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research |
| title_full_unstemmed | Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research |
| title_short | Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research |
| title_sort | experiences among patients with cystic fibrosis in the mucoexocet study of using connected devices for the management of pulmonary exacerbations grounded theory qualitative research |
| url | https://formative.jmir.org/2024/1/e38064 |
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