Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19

S. Houben-Wilke; J.M. Delbressine; A.W. Vaes; Y.M.J. Goertz; R. Meys; F.V.C. Machado; M. Van Herck; C. Burtin; R. Posthuma; F.M. Franssen; N.H.P. van Loon; B. Hajian; H. Vijlbrief; Y. Spies; A. van't Hul; D.J.A. Janssen; M.A. Spruit

doi:10.1177/2374373521997222

Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19

S. Houben-Wilke^*, J.M. Delbressine, A.W. Vaes, Y.M.J. Goertz, R. Meys, F.V.C. Machado, M. Van Herck, C. Burtin, R. Posthuma, F.M. Franssen, N.H.P. van Loon, B. Hajian, H. Vijlbrief, Y. Spies, A. van't Hul, D.J.A. Janssen, M.A. Spruit

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics, the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.

Original language	English
Article number	2374373521997222
Number of pages	9
Journal	Journal of Patient Experience
Volume	8
DOIs	https://doi.org/10.1177/2374373521997222
Publication status	Published - 5 Mar 2021

Keywords

COVID-19
corona
unmet needs
information needs
long-term symptoms
social support
MODEL

Access to Document

10.1177/2374373521997222Licence: CC BY-NC

Cite this

Houben-Wilke, S., Delbressine, J. M., Vaes, A. W., Goertz, Y. M. J., Meys, R., Machado, F. V. C., Van Herck, M., Burtin, C., Posthuma, R., Franssen, F. M., van Loon, N. H. P., Hajian, B., Vijlbrief, H., Spies, Y., van't Hul, A., Janssen, D. J. A., & Spruit, M. A. (2021). Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19. Journal of Patient Experience, 8, Article 2374373521997222. https://doi.org/10.1177/2374373521997222

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abstract = "To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics, the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.",

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author = "S. Houben-Wilke and J.M. Delbressine and A.W. Vaes and Y.M.J. Goertz and R. Meys and F.V.C. Machado and {Van Herck}, M. and C. Burtin and R. Posthuma and F.M. Franssen and {van Loon}, N.H.P. and B. Hajian and H. Vijlbrief and Y. Spies and {van't Hul}, A. and D.J.A. Janssen and M.A. Spruit",

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Houben-Wilke, S, Delbressine, JM, Vaes, AW, Goertz, YMJ, Meys, R, Machado, FVC, Van Herck, M, Burtin, C, Posthuma, R, Franssen, FM , van Loon, NHP, Hajian, B, Vijlbrief, H, Spies, Y, van't Hul, A, Janssen, DJA & Spruit, MA 2021, 'Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19', Journal of Patient Experience, vol. 8, 2374373521997222. https://doi.org/10.1177/2374373521997222

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AU - Vaes, A.W.

AU - Goertz, Y.M.J.

AU - Meys, R.

AU - Machado, F.V.C.

AU - Van Herck, M.

AU - Burtin, C.

AU - Posthuma, R.

AU - Franssen, F.M.

AU - van Loon, N.H.P.

AU - Hajian, B.

AU - Vijlbrief, H.

AU - Spies, Y.

AU - van't Hul, A.

AU - Janssen, D.J.A.

AU - Spruit, M.A.

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AB - To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics, the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.

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