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

Abstract

ObjectiveTo explore barriers and facilitators to staying in work following stroke.DesignQualitative analysis of posts regarding staying in work following stroke using the archives of an online forum for stroke survivors.Participants60 stroke survivors (29 male, 23 female, 8 not stated; mean age at stroke 44 years) who have returned to work, identified using terms ‘return to work’ and ‘back at work’.SettingPosts from UK stroke survivors and family members on Talkstroke, the forum of the Stroke Association, between 2004 and 2011.ResultsStroke 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 positive (eg, 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.ConclusionsDespite 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 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.

Living with the long-term consequences 11-13 years after stroke: A phenomenological study

“…It seemed as if cognitive impairment influenced the lost connection between body and world for most of the participants, which is in line with research that identified a changed sense of self and self-identity among young persons with stroke (10,(20)(21)(22)(23)(24). For the participants in this study, when the body did not work, this was, above all, most apparent in working life.…”

“…Several studies have shown that persons with cognitive impairment after stroke experience difficulties in everyday life, as well as changes in sense of self and self-identity (18)(19)(20)(21) and self-body split (22). These impairments are commonly invisible (23,24), which has consequences for recovery, continuing to work and engaging in occupations over time.…”

Neurologists dealing with sickness certification: Experiences of problems and need of competence

“…The corresponding rates for all physicians were 58% and 64%, respectively (Ljungquist et al, 2015). For patients with a neurological diagnosis there is often a psychological impact to consider, and effects of such on work capacity is often more difficult to access which could be one reasons for why neurologists find it more difficult than other physicians to assess work capacity (Aghaei, Karbandi, Gorji, Golkhatmi, & Alizadeh, 2016;Balasooriya-Smeekens, Bateman, Mant, & De Simoni, 2016). The results regarding problems with assessing patients' work capacity are in line with results from other studies (Bränström et al, 2014;Kedzia et al, 2015;Ljungquist et al, 2015;Lofgren et al, 2007).…”

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study

“…Traditional methods of accessing parental views may exclude certain groups including those who are more geographically remote and those from culturally and ethnically diverse backgrounds 11 12. Logistics, time and discomfort in face-to-face and group interaction may deter some individuals.…”

“…There is an increasing focus on understanding the potential value of this method of data collection in qualitative research 13 14. Forums have successfully been used in healthcare research,15–20 providing a flexible and safe space, where open and honest discussions can be held over a period of months, in a conveniently non-synchronous way for potentially large numbers of users in different geographical areas 11 12 21. There is no burden on travel, and participation results in minimal disruption to daily life.…”