Table 2

Themes, divided in barriers and facilitators in retaining work among people who have returned to work: findings from the Talkstroke online webforum

(Sub) themesBarriersFacilitators
1. Understanding stroke
1a. Visibility
  • Disabilities that are not visible to other people (eg, fatigue, cognitive problems)

  • Others (ie, colleagues, employer) thinking that the patient is making up the problems

  • Feeling a fraud when having invisible problems, or problems that the patient sees as relatively ‘minor’ (and therefore apprehension in sharing problems with others at the workplace)

  • Having had a stroke at the workplace (increased visibility, and as a result patients’ experience of support and understanding at the workplace)

1b. Normality
  • Looking normal, not feeling or being normal (leading to a lack of understanding of a person's difficulties)

  • Acting normal (others not being aware of difficulties, and in some cases being more tired by trying to ‘keep up’)

  • Wanting to be normal and return to work, work acting as a motivator to recovery

1c. Sharing situation with others
  • Not wanting to share stroke-related difficulties with others at work (resulting in less understanding of the patients’ difficulties)

  • Embarrassment regarding sharing problems with other people

  • Talking with employer about difficulties, and the adjustments that are needed

1d. Knowledge of stroke
  • A lack of understanding of stroke and stroke-related problems, or the timeframe of recovery (by patients and employers)

  • GPs lack of understanding of the patients’ problems

  • (Improvement of) employers’ understanding of stroke and stroke-related problems

  • Patients’ understanding of problems and their ability to cope with them (table 2.)

1e. Expectations and self-awareness
  • Returning to work too soon, or taking on too much at work

  • Lack of self-awareness, returning against the advice of others, or underestimating own disabilities, (ie, being unaware of making mistakes)

  • Being back at work is more difficult than anticipated

  • Problems getting worse after returning to work

  • Overestimation of own disabilities, or potential difficulties related to work

  • The anticipation of difficulties at work, and making appropriate arrangements related to this (ie, coping by the patient, as well as strategies in the workplace)

1f. Acceptance
  • Pushing oneself (ie, not accepting a changed identity, and that one cannot function like before TIA/stroke)

  • Accepting that one cannot function like before TIA/stroke, needs more rest, has to listen to his our her body

  • Priorities changed, and re-labelling of one's identity (ie, work now seen as less important)

2. Support
2a. Strategies in the workplace
  • Problems with following the right steps towards making adjustments (eg, not talking to Occupational Health)

  • Range of strategies incorporated: Adjustments to the workplace, gradual return, reduced hours or duties, taking time, working at home, going home if tired

  • Occupational Health appointment

  • Changed the job for a job that was manageable

  • Union involvement (to keep a job)

  • Employer expecting a return to work

  • Patient following the appropriate steps at work (Occupational Health, HR)

2b. Support from others
  • Lack of support and at work, by the employer or by colleagues (patient not feeling understood, and in some cases resulting in job loss)

  • Having a supportive and patient employer, having supporting colleagues

  • Supportive family and friends

  • Advice and support from others with stroke (ie, the Talkstroke Online forum, stroke club)

2c. Others’ reactions
  • Being bullied at work by employer/manager or colleagues

  • Coping with comments and jokes made by others (ie, ignoring them, or using humour)

2d. Money
  • Having to work because of money issues

  • Not entitled to benefits or retirement (eg, consultant not signing the form)

2e. GP
  • Signing not fit to work

  • GP not willing to extend sick leave (despite patient having various problems)

  • Not prescribing antidepressants

  • Signing fit to work

  • Leaving it up to the patient to decide what is best

  • Encouraging gradual return to work

  • Being empathetic

3. Impairments and recovery
3a. Stroke-related difficulties and recovery
  • Fatigue

  • Psychological problems

  • Memory or cognitive problems

  • Physical problems

  • Language or speaking problems

  • Problems specific to the job, or increased by returning to the job

  • Making mistakes

  • Insomnia

  • Not functioning like before

  • Subsequent stroke, or new disabilities

  • Coping with difficulties, listening to own body (see table 2)

  • Using antidepressants if needed

  • Improvement over time

  • Improvement of general recovery by medical interventions, physiotherapy, medication

3b. Indirect problems
  • Not being able to drive, commute to work

  • Needing to sleep in afternoon (eg, therefore not being able to work full-time)

  • Difficulties in applying for a job (the actual application process)

  • Getting ready in the morning taking a long time

  • Work itself increasing problems

  • Medication side effects interfering with work

  • Supportive colleagues helping out with commute, employer subsidising transportation to work

  • Various coping strategies (see table 2)

  • Having a pet improves general mood, and ability to deal with job

3c. Feelings/mental health problems
  • Stress (also augmenting stroke-related impairments)

  • Negative views regarding work

  • Fear a stroke may happen again at work

  • Negative feelings: lack of confidence (to be able to perform at work), feeling vulnerable at work, loneliness

  • Reducing stress levels (eg, by changing jobs)

  • Enjoying being back at work, enjoying talking with friends/colleagues

  • GP, general practitioner.