Participant’s experiences of an Education, self-management and upper extremity eXercise Training for people with Rheumatoid Arthritis programme (EXTRA)

Abstract Background The E ducation, self-management and upper extremity eXercise T raining for people with R heumatoid A rthritis programme (EXTRA) is an individualized, upper limb, home exercise regimen supplemented by four supervised, group sessions, a handbook and exercise dairy which improves upper extremity disability and self-efficacy. Objective and study design This qualitative interview study explored participants experience of EXTRA to inform development and implementation of EXTRA into practice. Participants Adults with Rheumatoid Arthritis who completed EXTRA were purposively sampled to include a range of ages, upper extremity disabilities, self-efficacy for arthritis self-management and attendance at EXTRA sessions. Methods Individual, semi-structured interviews were conducted with a single researcher until data saturation of themes was reached. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results Twelve participants (10 females; 32-87 years) were interviewed. Four overarching themes were identified: (i) Empowering self-management; (ii) influence of others and (iii) the challenge of sustaining exercise, which resonate with the Social Cognition Theory, and (iv) refining EXTRA: consistent and personalised. Conclusions EXTRA enhanced participants’ confidence to manage their arthritis independently and was adaptable so it could be integrated with other life commitments. Whilst healthcare professionals, peers and family and friends influenced exercise uptake, sustaining exercise was challenging. Participants desired consistent and continuing contact with a familiar physiotherapist (e.g. via follow-up appointments, digital health technologies) which accommodated individual needs (e.g. different venues, session frequency). Implementation of EXTRA needs to appreciate and address these considerations to facilitate success.