Barriers and facilitators to staying in work after stroke: insight from an online forum

Abstract

Objective: To explore barriers and facilitators to staying in work following stroke. Design: Qualitative analysis of posts regarding staying in work following stroke using the archives of an online forum for stroke survivors. Participants: 60 stroke survivors (29M, 23F, 8 not stated; mean age at stroke 44y) who have returned to work, identified using terms ‘return to work’ and ‘back at work’. Setting: Posts from UK stroke survivors and family members on Talkstroke, the forum of the Stroke Association, between 2004 and 2011. Results: Both stroke and Transient Ischaemic Attack (TIA) survivors reported residual impairments that for many had impact on work. Most impairments were ‘invisible’, including fatigue, problems with concentration, memory, and personality changes. Participants described both positive (e.g. back at work being better than expected) and negative work experiences, including being at risk of losing the job because of stroke-related impairments. Barriers to successfully staying in work included lack of understanding of stroke - in particular invisible impairments - of survivors, employers and General Practitioners (GPs), and lack of support in terms of formal adjustments, and ‘feeling supported’. Stroke survivors described how they developed their own coping strategies, and how workplace and employer helped them to stay in work. Conclusions: Despite having been able to return to work after a stroke, people may still experience difficulties in staying in work and risking losing their job. There is a need to improve awareness, in particular of invisible stroke-related impairments, among stroke survivors, work personnel and clinicians. This might be achieved through improved assessments of residual impairments both in the workplace and in General Practice. Future studies should investigate the effect of unrecognised fatigue and invisible impairments on staying in work following stroke, and explore the potential role for primary care in supporting stroke survivors who have returned to employment. Strengths and limitations of this study: • This is the first study that used online forum data to explore barriers and facilitators to staying in work after stroke/TIA, and complements the current evidence that is focussed mainly on returning to work. • The study used a novel methodological approach by qualitatively analysing posts of patients on an online forum, which allowed for naturalistic data collection without involvement of a researcher. However, a limitation of this approach is that no follow-up questions could be asked from patients.