PROJECT
An exciting Different Strokes research project about work after stroke is now underway. The three year project (funded by the Community Fund) will enable Different Strokes to understand issues about work which are important to stroke survivors, such as things that help or hinder employment after stroke. It will enable Different Strokes to advise stroke survivors about the best strategies to strengthen employment opportunities, and to advise employers, policy-makers and rehabilitation professionals about the employment needs of stroke survivors.
The Work After Stroke project is being coordinated by a team from University College London. This team is assisted by an Advisory Group, made up of stroke survivors and a range of experts and academics with experience of employment issues.
WORK AFTER STROKE QUESTIONNAIRE
We'd like to update you on what has been happening with the Work After Stroke research project since Different Strokes members took part in our questionnaire survey in Summer 2000. The Work After Stroke questionnaire was sent out to 3000 stroke survivors on the Different Strokes mailing list in July 2000. It was devised in consultation with members from 5 Different Strokes groups. These members, through discussion of their employment-related experiences and issues, advised the researchers about the types of questions they felt should be included in the questionnaire. Verbal reminders to encourage members to take part in the survey were given by group coordinators and a message was posted on the Different Strokes website. We received 672 responses by our September 2000 deadline and the results were logged into a database that had been created in Microsoft Access. Statistics were then produced from the data using a software program called SPSS. We obtained a lot of information about you and your experiences of facing work after stroke. Some of the initial results are summarised below:
WHO ARE YOU?
- Of people who returned the questionnaire - 55% are male, 45% are female.
- Of the people who returned to work - 52% are male, 48% are female.
- The highest % of people returning to work were in their 40s.
- Most responses per region were received from Anglia and the South West.
WHEN DID YOU HAVE YOUR STROKE?
| Relating to everyone: | Relating to 211 who returned to work: | |||||
| Date of Stroke | No of People | % | Date of Stroke | No of People | % | |
| Didn't answer | 18 | 2.7 | Didn't answer | 1 | 0.5 | |
| 1960s | 2 | 0.3 | 1960s | 1 | 0.5 | |
| 1970s | 10 | 1.5 | 1970s | 6 | 2.8 | |
| 1980s | 41 | 6.1 | 1980s | 12 | 5.7 | |
| 1990-1994 | 82 | 12.2 | 1990-1994 | 27 | 12.8 | |
| 1995 | 38 | 5.7 | 1995 | 9 | 4.3 | |
| 1996 | 74 | 11.0 | 1996 | 27 | 12.8 | |
| 1997 | 110 | 16.4 | 1997 | 30 | 14.2 | |
| 1998 | 145 | 21.6 | 1998 | 53 | 25.1 | |
| 1999 | 123 | 18.3 | 1999 | 41 | 19.4 | |
| Jan-June 2000 | 29 | 4.3 | Jan - June 2000 | 4 | 1.9 | |
BEFORE YOUR STROKE ?
- 347 of you were full-time paid employees
- 98 were self-employed
- 58 were part-time employees
- 25 were students
- 119 were either retired, not looking for work because of family responsibilities, or simply did not wish to work, e.g. backpacking
AFTER YOU HAD YOUR STROKE ?
- 84% of you were admitted to a general hospital ward
- 67% were admitted to a stroke unit
- 37% were admitted to a rehab unit
- 10% were admitted to other wards/units (e.g. private hospital, overseas)
WHAT DID YOU THINK ABOUT THE REHAB SERVICES ON OFFER?
These are the services you rated most positively:
- Community nurses (service received by 19% of members) 68.8% of you rated the service as excellent or good
- Speech and language therapy (service received by 50% of members) 66.1% of you rated the service as excellent or good
- Physiotherapy (service received by 75% of members) 66.0% of you rated the service as excellent or good
- GP (service received by 78% of members) 62.1% of you rated the service as excellent or good
These are the services you rated most negatively:
- Job Centre (received by 10% of members) 53.5% of you rated the service as poor or very poor
- Benefits Agency (received by 61% of members) 35.5% of you rated the service as poor or very poor
- Social work (received by 33% of members) 37.1% of you rated the service as poor or very poor
- Psychology (received by 29% of members) 28.4% of you rated the service as poor or very poor
HOW DO YOU RATE YOUR ABILITIES?
When asked to rate your abilities, those of you who returned to work felt your strongest abilities were:
- Reading - 70.4% rated as excellent or good
- Speaking - 67.3% rated as excellent or good
- Using main hand/arm - 64.7% rated as excellent or good
- Vision - 64.3% rated as excellent or good
Those of you who did not return to work felt your greatest weaknesses were:
- Walking - 49.9% rated as poor or very poor
- Writing - 46.1% rated as poor or very poor
- Energy level - 44.9% rated as poor or very poor
- Confidence level - 43.5% rated as poor or very poor
AND NOW THE BIG ONE! - DID YOU RETURN TO WORK?
After stroke, 503 of you wanted to return to work. The remaining 169 did not want to work as you were either over retirement age, not looking for work because of family responsibilities, or preferred not to work.
With regards to the 503 of you who expressed a desire to return to work, 211 have worked and 292 haven't:
- 211 of you (42%) have worked
- 292 of you (58%) have not worked
WHAT DO YOU DO NOW?
- 239 (48%) stated you would like to work but do not feel fit enough
- 135 (27%) returned to the same or modified job
- 11 (2%) became self-employed
- 31 (6%) obtained a different job than before their stroke
- 61 (12%) became students and/or did voluntary work
- 16 (3%) are unemployed
- 10 (2%) were not working before your stroke but are working now
HOW HAVE YOUR CIRCUMSTANCES CHANGED?
CHANGES IN INCOME:
Those of you who returned to work:
- 56% experienced a decrease in income
- 27% saw their income level remain the same
- Only 17% experienced an increase in income!
Those of you who did not return to work:
- 80% experienced a decrease in income
- 9% saw their income level remain the same
- 11% experienced an increase in income
DO YOU RECEIVE BENEFITS?
Those of you who returned to work:
- 74% received state benefits
- 21% received an occupational pension
- 5% receive income from a health insurance policy.
Those of you who did not return to work:
- 79% received state benefits
- 15% received an occupational pension
- 6% received income from a health insurance policy.
WHO OR WHAT HAS HELPED YOU IN THE WORKPLACE???
In the workplace - the most helpful factors were ranked as:
- Co-workers
- Employer
- Sick leave
- Responsibilities required
WHO OR WHAT HAS HINDERED YOU IN THE WORKPLACE???
The most negative factors were ranked as:
- Pace of work
- Responsibilities required
- Employer
- Hours of work
WHAT DID YOU RATE AS YOUR MOST POSITIVE INFLUENCES????
Different Strokes
- Meeting other members of Different Strokes helped 71% of you who have worked and 65% of you who haven't
- Information from Different Strokes about work helped 70% of you who have worked and 61% of you who haven't
- Different Strokes exercise classes helped 66% of you who have worked and 63% of you who haven't
Family
- 79% of you who have worked felt that family helped you return to work
- 45% of people who haven't returned to work still felt that family helped with regards to work after stroke
- Only 7% of you who have worked and 16% of you who haven't worked felt that your families had hindered your recovery/return to work
Friends
- 74% of you who have worked deemed friends a helpful factor in your return to work.
- 41% of you who haven't returned to work still felt that friends had helped with regards to work after stroke
- Only 4% of people who have worked and 12% of you who haven't worked felt that their families had hindered your recovery/return to work
WHAT DID YOU RATE AS YOUR MOST NEGATIVE INFLUENCES????
Driving
- 67% of you who haven't returned to work feel that driving has been a hindering factor. It has also hindered 35% of you who have worked.
Public Transport
- 72% of you who haven't returned to work feel that public transport has been a hindering factor. Has also hindered 59% of you who have worked.
Competition for Jobs
- 49% of you who haven't returned to work feel that competition for jobs has been a hindering factor. Has also hindered 65% of you who have worked.
WORK AFTER STROKE INTERVIEWS
What happens next?
424 of you volunteered for the interview phase. 24 people have been shortlisted and contacted to take part in an in-depth interview. They have also been allowed the opportunity to nominate a "supporter" for an additional interview. "Supporters" have included family members, rehabiltation professionals (both health and employment based) and employers. Issues from the interviews will be raised in interviews with other employers (2002). The selection/recruitment of 12 employers to interview will be heavily influenced by the interviewees' experience.
