professional role

Unemployable or unemployed?
The 1995 Disability Discrimination Act was meant to herald a new dawn for people with disabilities in the workplace, including those with aphasia. In reality the interaction of many factors influences whether or not an individual returns to work. Kathleen Taylor and Claire Besser discover that the profession needs to show a bit more imagination to be truly working with aphasia.

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if you are interested in qualitative research have clients of working age want to enable (and not disable)

ell me what you do and Ill tell you who you are. Gaarders statement (1995, p.329) sums up the importance of work and how our individual occupations are closely related to how we define ourselves as people. But if work plays such an important part in our lives, what happens when external factors interrupt our life plans? As fourth year students at City University we were required to design and carry out a research project. Although this was daunting, we realised the importance of choosing a field that not only interested us but that answered questions we as students had asked. We had the opportunity to work at the City Dysphasic Group where we met a wide range of individuals with aphasia. It became apparent that they had a variety of unresolved issues around their employment status. This left us with the questions:- What factors influence the ability of people with aphasia post-stroke to return to work? And how can we as speech and language therapists enable them to do so? We aimed to establish factors that influence the ability to return to work and identify barriers that prevent people with aphasia from doing so. We wanted to compare and contrast the differing barriers that may allow some individuals to return to work successfully while preventing others, and establish recommendations made by people with aphasia on any aspect of returning to work.

Kathleen Taylor

Claire Besser

Interviewed in-depth
The project involved nine respondents interviewed in-depth using a method recommended by Parr et al (1997). We used the social and community policy research framework method as described in Ritchie & Spencer (1994) to analyse the data. All respondents were of working age and in full-time employment at the time of their stroke. They had come from a wide range of working backgrounds, and included a lawyer, sous-chef,

Figure 1 Pie chart comparing changes in working patterns

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2002

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Figure 2 Themes THEME A. Attitudinal DEFINITION Personal opinions and views from colleagues, employers, medical professionals and the individual respondents. INFLUENCING FACTOR You know I wish I hadnt had the stroke, but the reality is that I did....10 years on, I think I have to say that, I think Ive gained more than I have lost out of the whole deal....Ive gained quite a lot, coz I felt like Id lost so much. They tried. Everything they gave me. I said I wanted a computer. I thought I want to look forward and at the present. BARRIER I thought about being a chef but the doctor said to me, you cant be a chef.

B. Communication Management of the individuals aphasia within the workplace. C. Emotional These are internal to the individual. They include comments on confidence, encouragement, motivation and self-esteem. Changes in financial status that the respondents were confronted with as a result of their aphasia. Issues relating to gaining information about aphasia, benefits and other options open to all parties. This includes anything that did not fit comfortably under the headings above, such as previous experiences, familial support and job role modification. Any difficulties resulting from hemiplegia and loss of cognitive skills such as fatigue and shortened attention span.

Usually my speech let me down. In a way Ive got no confidence in me.

D. Financial

I automatically got invalidity benefits.

If I could work one or two days out of the year, why not? But the benefits would make a difference. I look forward to getting a job, but what job should I do? I dont have a clue. I didnt want to re-train and go to a lesser position.

E. Informational

Counselling...gives you the opportunity to explore options you might have. My wife is really good and my kids are fantastic.

F. Other
teacher, freelance camera operator and a surveyor. Following their stroke, all respondents had to adapt their G. Physical work (see figure 1). Some were unable to return to work, whilst others returned in a different capacity, often parttime and on a consultancy basis. Those respondents who spoke more positively about their post-stroke employment were those who took the opportunity to retrain in a completely different field of employment (for example, from public relations manager to counsellor.) Figure 2 shows the main and diverse enabling and disabling themes that influence whether an individual may or may not return to work. Each theme is accompanied by an illustrative quote from the respondents. A. Attitudinal themes can be both external and internal to the individual. The data showed that attitudes from medical professionals, colleagues and employers and those internal to the person with aphasia affected whether they returned to work or not. This is supported in Parr et al (1997). These attitudes could also be classified as positive or negative influences on a return to work.

One respondent received a left-handed keyboard to compensate for their hemiplegia.

Some days Im so tired I cant get up.

Those respondents who spoke more positively about their post-stroke employment were those who took the opportunity to retrain in a completely different field of employment

work. Only one respondent cited their communication impairment as the overriding barrier preventing them going back. Garcia et al (2000) suggest it is not the communication disorder itself but the associated difficulties such as fatigue and physical impairment which cause more problems with returning to employment. C. Emotional factors were raised on numerous occasions reflecting Parr et als reference to the coping process as complex and longdrawn-out (1997, p.111). The respondents supported their advice of taking time to deal with the impact of aphasia, and recommended counselling. Motivation is cited frequently in the findings and the literature. Many respondents reported they were keen to return to employment but, as one pointed out, employers do not give you a job just because you are motivated. It appears that people with aphasia must be motivated to overcome the barriers within the workplace; however, it has little influence on their employment status. D. Financial factors mainly concerned issues around benefits. Parr et al (1997) report that the drop in income and increased dependence on

benefits can mean individuals are unable to pursue their interests. This in turn can lead to social withdrawal and subsequent depression, which reduces an individuals likelihood of returning to work. The difficulty the person with aphasia had in dealing with the complexity of information presented to them on available benefits had an impact on returning to work. E. Informational factors concern peoples knowledge and understanding of aphasia and its associated difficulties. As found by Parr et al (1997), many respondents had difficulties understanding the true nature of their aphasia. If the person with aphasia is unsure of their own difficulties, this will affect what assistance and strategies can be used within the workplace. The respondents also felt their employers had little or no understanding of their aphasia. On his return to work, one respondent was given a computer with voice recognition software to reduce his difficulty with writing due to hemiplegia. However, he has an expressive dysphasia characterised by perseveration and word finding difficulties, which rendered the voice recognition software useless. Respondents who had a better understanding of their aphasia were more likely to be successful in returning to employment. One who found new employment

employers do not give you a job just because you are motivated

B. Communication factors were not a major theme within the findings. Rather, it is the communication impairment interacting with other factors such as the environment, which has the biggest impact on enabling people to return to

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5 steps to better practice: working with aphasia

1. 2. 3. 4. 5. help clients understand their aphasia better work with clients to list possible solutions for prospective employers make therapy relevant to a work environment discuss the possible advantages of retraining share skills and planning with occupational therapists.
following her stroke provided prospective employers with a summary of her aphasia and strategies that can be implemented to overcome her difficulties (figure 3). F. Other factors cited were support from others and job role modification. Many said their family and friends were supportive; however, this had no bearing on their return to work. The respondents experiences support the finding of Garcia et al (2000) that employers frequently offer support through the provision of specialist equipment. One reported that by having their job modified they were made to feel less able and incapable of doing their job as well as they had prior to their stroke. As Parr et al (1997) state, aphasia does not affect intelligence. The respondents recommended that, rather than modify the job role, it may be better to reduce the number of hours worked. G. Physical factors reported include epilepsy, fatigue, hemiplegia and memory. The respondents cited these as direct barriers to returning to work and also as barriers that interacted with other factors such as information. Through using a qualitative approach to finding out about the implications of returning to work with acquired aphasia we have gained a broad perspective of some of the factors and barriers people with aphasia encounter when considering return to employment. As a profession, however, we have a lot to do. Speech and language therapists have a strong influence on individual perceptions of recovery. The opinion of the medical team can have a lasting effect on how the individual with aphasia views their skills and chance of returning to work. It would be useful to investigate further the impact of our professional opinion and the therapy we provide on whether an individual with aphasia returns to work or not. It may also be beneficial to raise the profile of the true nature of aphasia with other professionals such as the medical team to change their attitudes, with the aim of making the information the individual with aphasia is given more of an enabling than disabling factor.

Figure 3 Return to work solutions

Emma (not her real name) was twenty-one years old when she suffered a stroke. Prior to this, she worked for a company in an administrative capacity. Her stroke left her with a residual right-sided hemi-paresis and an expressive dysphasia. This was characterised by word finding and syntactical difficulties and acquired dyslexia, all of which worsen under increased stress: I cant handle pressure, it goes terrible. Following several years of seeking work unsuccessfully, Emma found another job. Emma suggests that being able to describe your residual difficulties and giving practical solutions will show an employer how these difficulties can be overcome. Emma recognised and reflected the need for employers to be sympathetic and aware of her needs with solutions such as: working part-time to overcome the high level of fatigue most people with aphasia experience. using checklists as prompts to remind the individual what they are meant to ask, do or say when performing tasks. having a voice activated computer with grammar and spellcheckers, to overcome writing difficulties. asking your manager to check letters/reports before they are sent out.

they are to return to work successfully. If we want to get better at enabling people with aphasia to return to employment, we need to focus on developing full awareness of the true nature and characteristics of their aphasia. Occupational therapists play an important role in working with and encouraging individuals with an acquired disability in returning to work. It would be useful to investigate their therapeutic ethos and how they encourage and support successful reintegration into the workplace. In Open Hole, the Stony Wall (1998), the impact of the 1995 Disability Discrimination Act on people with aphasia is discussed. The authors raise concerns regarding possible loopholes and the lack of provision there is for adults with aphasia in the Act. A longitudinal study would enable us to measure over time the changes in practice and attitudes to people with aphasia brought about by the legislation. It has become apparent through this study that many factors are significant, and no one single factor stands alone. More importantly, there are a number of interacting factors occurring. As speech and language therapists it is our brief to enable individuals with communication impairments to maximise on their choices and opportunities in all aspects of their life including work, personal and social capacities. Traditionally speech and language therapy has been limited by time, resources and research; this means that skills learnt within therapy sessions are not only difficult to generalise but can also be irrelevant to the working environment. It is essential that we consider our role with regard to current legislation, research, clinical competencies and guidelines so we can help those individuals wishing to return to employment. Kathleen Taylor is now a speech and language therapist at Whipps Cross University NHS Hospital and Claire Besser is a speech and language therapist for Newham PCT and Sure Start. The City Dysphasic Group has been superseded by Connect. For further information about Connect and their programme of education and training events, phone 020 7367 0846 or see www.ukconnect.org.

References
Action for Dysphasic Adults Working Party (1998) Open Hole The Stony Wall. Unpublished report. Parr, S., Byng, S. & Gilpin, S. (1997) Talking About Aphasia: Living with loss of language after stroke. Open University Press; Buckingham. Gaarder, J. (1995) Sophies World. Phoenix House; London. Garcia, L.J., Barrette, J. & Laroche, C. (2000) Perceptions of the Obstacles to Work Reintegration for Persons with Aphasia. Aphasiology 14 (3); 269-290. Ritchie, J. & Spencer, L. (1994) Qualitative Data Analysis for Applied Policy Research. In Bryman, A. & Burgess, R. (Eds.) Analysing Qualitative Data. Routledge; London.

Full awareness
The more aware the individual with aphasia is of their strengths and weaknesses the more likely

SPEECH & LANGUAGE THERAPY IN PRACTICE WINTER 2002