Experiences of self‐care during the COVID‐19 pandemic among individuals with rheumatoid arthritis: A qualitative study

Abstract

Objectives This study aimed to explore the impact of the coronavirus disease 2019 (COVID‐19) pandemic on self‐care of individuals living with rheumatoid arthritis (RA). Methods Guided by a constructivist, qualitative design, we conducted one‐to‐one in‐depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized‐controlled trials. An inductive, reflexive thematic analysis approach was used. Results Twenty‐six participants (aged 27–73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self‐care describes how participants took measures to continue self‐care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self‐care. (2) Managing emotions describes resilience‐building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. Conclusion The insights gained may inform clinicians and researchers on ways to support the self‐care strategies of individuals with RA and other chronic illnesses during and after the COVID‐19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. Patient or Public Contribution This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.

Experiences during the COVID-19 Pandemic among People with Inflammatory Arthritis: “Reopening of Society Is Harder than Lock-Down”—A Qualitative Interview Study

“…Nevertheless, other participants in our study experienced that more time at home and fewer social obligations during the pandemic created the opportunity for more exercise and improved sleep. These findings are supported by Leese et al, who described how some patients with RA were able to improve their self-care while spending more time at home [35].…”

The perceived effects of COVID‐19 while living with a chronic illness

“…Participants reported a lack of confidence in self-monitoring and symptom interpretation when contributing to virtual consultations. Leese et al (2021) have reported that some people with rheumatoid arthritis experienced an improvement in their self-care practices while remaining at home. However, Massouh et al (2020) reported that self-efficacy/confidence is a key determinant in self-care, enhanced by social support and knowledge.…”

Advancing Patient and Community Engagement in Occupational Therapy Research

“…For decades, community-based participatory action researchers have intentionally partnered with community collaborators to identify research questions and priorities toward addressing a particular health or social issue; the Canadian Journal of Occupational Therapy (CJOT) has published several studies of this nature (see, for example, Turcotte et al, 2019). While participatory research methods typically describe the roles of community partners as an explicit step, this element can also be integrated into other research designs, including qualitative methodologies (e.g., Leese et al, 2021) and multi-national clinical trials (e.g., Fletcher et al, 2018).…”

“…Si, normalement, les méthodes de recherche participative décrivent explicitement les rôles des partenaires de la communauté, cet élément peut également être intégré dans d’autres devis de recherche, y compris les méthodologies qualitatives (p. ex. Leese et al, 2021) et les essais cliniques internationaux (p. ex. Fletcher et al, 2018).…”