Decision-making around COVID-19 public health measures and implications for self-care activities: experiences of persons with rheumatoid arthritis
Decision-making around COVID-19 public health measures and implications for self-care activities: experiences of persons with rheumatoid arthritis
Objective: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. Methods: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. Results: Thirty-nine participants (aged 26–86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) “upholding moral values of togetherness” because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) “relational autonomy—supports and challenges,” because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) “differing trust in information sources,” in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. Conclusion: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic. (Figure presented.).
140-152
Leese, Jenny
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Therrien, Stephanie
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Ramachandran, Smruthi
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Backman, Catherine L.
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Ma, Jasmin K.
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Koehn, Cheryl L.
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Hoens, Alison M.
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English, Kelly
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Davidson, Eileen
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McQuitty, Shanon
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Gavin, James
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Adams, Jo
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Li, Linda C.
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January 2024
Leese, Jenny
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Therrien, Stephanie
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Ramachandran, Smruthi
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Backman, Catherine L.
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Ma, Jasmin K.
c9d0f748-ce0f-4fc2-9ba1-c4a077eefdc8
Koehn, Cheryl L.
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Hoens, Alison M.
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English, Kelly
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Davidson, Eileen
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McQuitty, Shanon
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Gavin, James
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Adams, Jo
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Li, Linda C.
3a80b792-9932-455b-b9c1-2c960d00b8f4
Leese, Jenny, Therrien, Stephanie, Ramachandran, Smruthi, Backman, Catherine L., Ma, Jasmin K., Koehn, Cheryl L., Hoens, Alison M., English, Kelly, Davidson, Eileen, McQuitty, Shanon, Gavin, James, Adams, Jo and Li, Linda C.
(2024)
Decision-making around COVID-19 public health measures and implications for self-care activities: experiences of persons with rheumatoid arthritis.
Arthritis Care and Research, 76 (1), .
(doi:10.1002/acr.25262).
Abstract
Objective: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. Methods: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. Results: Thirty-nine participants (aged 26–86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) “upholding moral values of togetherness” because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) “relational autonomy—supports and challenges,” because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) “differing trust in information sources,” in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. Conclusion: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic. (Figure presented.).
Text
RA COVID Paper_PH_Oct 11 2023_clean_accepted
- Accepted Manuscript
Image
RA_COVID_Graphical Abstract_Part 2_FINAL
- Accepted Manuscript
More information
Accepted/In Press date: 17 October 2023
e-pub ahead of print date: 23 October 2023
Published date: January 2024
Additional Information:
Funding Information:
We sincerely thank each participant who shared their time and experience for the purpose of this qualitative study, as well as patient collaborator Linda Rowan and members of Arthritis Research Canada's Arthritis Patient Advisory Board for sharing valuable insights to shape interpretation of the study findings. We also thank Johnathan Tam, Eric C. Sayre, and Amrit Sandhu for their important contributions.
Funding Information:
Supported by the Arthritis Society Canada (grant SOG‐16‐391).
Publisher Copyright:
© 2023 The Authors. Arthritis Care & Research published by Wiley Periodicals LLC on behalf of American College of Rheumatology.
Identifiers
Local EPrints ID: 483636
URI: http://eprints.soton.ac.uk/id/eprint/483636
ISSN: 2151-464X
PURE UUID: d7bb231f-b769-43f7-a6b4-ebffc486aade
Catalogue record
Date deposited: 02 Nov 2023 18:00
Last modified: 23 Oct 2024 04:01
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Contributors
Author:
Jenny Leese
Author:
Stephanie Therrien
Author:
Smruthi Ramachandran
Author:
Catherine L. Backman
Author:
Jasmin K. Ma
Author:
Cheryl L. Koehn
Author:
Alison M. Hoens
Author:
Kelly English
Author:
Eileen Davidson
Author:
Shanon McQuitty
Author:
Linda C. Li
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