Ethical issues experienced by persons with rheumatoid arthritis in a wearable‐enabled physical activity intervention study

Leese, Jenny and Zhu, Siyi and Townsend, Anne F. and Backman, Catherine L. and Nimmon, Laura and Li, Linda C. (2022) Ethical issues experienced by persons with rheumatoid arthritis in a wearable‐enabled physical activity intervention study. Health Expectations, 25 (4). pp. 1418-1431. ISSN 1369-6513

Abstract

Introduction: Using wearables to self‐monitor physical activity is a promising approach to support arthritis self‐management. Little is known, however, about the context in which ethical issues may be experienced when using a wearable in self‐management. We used a relational ethics lens to better understand how persons with rheumatoid arthritis (RA) experience their use of a wearable as part of a physical activity counselling intervention study involving a physiotherapist (PT). Methods: Constructivist grounded theory and a relational ethics lens guided the study design. This conceptual framework drew attention to benefits, downsides and tensions experienced in a context of relational settings (micro and macro) in which participants live. Fourteen initial and eleven follow‐up interviews took place with persons with RA in British Columbia, Canada, following participation in a wearable‐enabled intervention study. Results: We created three main categories, exploring how experiences of benefits, downsides and tensions when using the intervention intertwined with shared moral values placed on self‐control, trustworthiness, independence and productivity: (1) For some, using a wearable helped to ‘do something right’ by taking more control over reaching physical activity goals. Some, however, felt ambivalent, believing both there was nothing more they could do and that they had not done enough to reach their goal; (2) Some participants described how sharing wearable data supported and challenged mutual trustworthiness in their relationship with the PT; (3) For some, using a wearable affirmed or challenged their sense of self‐respect as an independent and productive person. Conclusion: Participants in this study reported that using a wearable could support and challenge their arthritis self‐management. Constructing moral identity, with qualities of self‐control, trustworthiness, independence and productivity, within the relational settings in which participants live, was integral to ethical issues encountered. This study is a key step to advance understanding of ethical issues of using a wearable as an adjunct for engaging in physical activity from a patient's perspective. Patient or Public Contribution: Perspectives of persons with arthritis (mostly members of Arthritis Research Canada's Arthritis Patient Advisory Board) were sought to shape the research question and interpretations throughout data analysis.