Background/Purpose: The spectrum of individual decisions about adopting public health measures (e.g., vaccination programs, physical distancing, mask wearing) to reduce COVID-19 transmission has important implications for individuals with rheumatoid arthritis (RA) in their everyday self-care. One aim of our qualitative study was to explore how decision-making about adopting public health recommendations influenced self-care experiences of individuals with RA.

Methods: The study was jointly designed and conducted with patient partners living with RA. Between December 2020 and December 2021, we conducted one-to-one semi-structured interviews (30-70 mins) with adults with RA. Participants were purposively sampled from an ongoing randomized controlled trial (RCT) testing a web-based self-care intervention. To be eligible for the RCT, participants had: 1) a physician confirmed diagnosis of RA; 2) no joint surgery in the past six months; 3) no history of acute injury to any joints in the past six months; 4) an email address and daily access to a computer or mobile device. In the present qualitative study, we aimed for maximum variation in age, sex, and education, within the limits of our RCT sample. A rigorous, collaborative, and reflexive thematic analysis approach was used.

Results: Thirty-nine participants (aged 26-86; 36 females; 24 held a university degree or above) were interviewed. Preliminary themes are:

1) Respecting freedom of choice: Many participants felt fortunate to be able to adopt public health measures to maintain involvement in meaningful activities, such as grocery shopping, going to work, and being physically active. Some, however, described how their choice to adopt these measures was challenged, explaining how they defended their freedom to choose to others (e.g., relatives). Many emphasized their respect for others’ freedom to choose, even though others’ choices complicated participants’ self-care decisions; 2) Feeling a moral responsibility: Participants felt a responsibility to protect the welfare of their families and wider community as an important driver in their decision-making to adopt public health measures. Some described adapting their self-care to ensure this responsibility was upheld; 3) Differing trust in information sources: Participants described different forms and changing degrees of trust they placed in health professionals and other sources (e.g., public health officials, media, friends) when making decisions about public health measures.

Conclusion: Our findings direct attention to ethical issues around participants’ expressed freedom of choice, social responsibility, and trust. They offer an early glimpse into how decision-making around public health measures raised ethical tensions in the self-care experiences of individuals living with RA. Our findings thus may serve to sensitize researchers, health professionals, and policymakers in supporting decision-making about public health measures in ways that value the experiences of individuals with RA and other autoimmune diseases during the pandemic and beyond.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/decision-making-around-vaccination-and-other-public-health-measures-during-the-covid-19-pandemic-experiences-of-individuals-with-rheumatoid-arthritis/