Cystic fibrosis and career
Evaluation of a questionnaire among adult patients
In April 1999 the AKL organised a questionnaire of adults with cystic fibrosis on the subject of career. Stephan Kruip has evaluated the results.
Approx. 600 adults with cystic fibrosis were written to. 74 questionnaires were evaluated. This return is completely normal for this type of questionnaire. Of those who answered 38 were male and 32 female, four did not give their gender. Two thirds of the 74 adults were employed, 13 retired, seven in training and five studying.
Of those employed it was noticeable that many, two thirds, were employed in administrative jobs. Those employed have on average already been more than eight years in their jobs, where the range was from a few months to 23 (!) years. A third worked part-time (average 24 hours per week), the rest full-time (average 38 hours per week). Every fifth person considered the possibility of soon applying for a pension.
Those "retired" among the patients have been receiving a pension for two and a half years on average. Before the start of the retirement they worked on average for nearly ten years.
In answer to the question "What led you to chose this training/this career/this study?" over 60% said interest in the vocation. 14% said the advice of the parents, 11% the example of relatives or friends, 8% the advice or placement by the Job Centre and 5% the advice of their treating doctor as decisive factors. The influence of the cystic fibrosis on the choice of the training, the job or the study was assessed as being middle sized. On a scale of (none) to six (very high) the satisfaction with the job, the training or study was assessed on average as four, that is overwhelmingly positive. It appears that satisfaction in the job is greater the less the influence the cystic fibrosis had on the choice of career. There are two questions: Is this result statistically significant? And can it be that patients who do badly and are forced to consider their disease in their choice of career, are more dissatisfied in the job because of more times of absence or coughing attacks?
Whether parents, friends, the Job Centre or an interest were important in the choice of career, they had in contrast no recognisable influence on the job satisfaction. Asked about conflicts, problems and difficulties at the workplace, the following points were given, sorted according to frequency:
- trouble with employer because of frequent absence from work (12)
- work is too tiring and too long to undergo more treatment (8)
- frequent coughing and coughing attacks disturb (8)
- regular iv treatment is not tolerated (7)
- cigarette smoke at the workplace (7)
- small chances of promotion because of CF (6)
- relationships with colleagues, envy, trouble (6)
- absences because of rehabilitation leading to trouble (5)
- infections through contacts at work (2)
- permanent shortage of time because of job and treatment (1)
- stress caused by dust (1)
- employer demands overtime (1)
- unflexible working times (mornings) (1)
The questionnaire had no scientific claims, but showed some interesting results. The AKL wishes to stimulate investigating more closely the subject "Career and cystic fibrosis":
In what vocational fields are adults with
CF employed and with what long-term success?
Can generally valid coping strategies be formulated which allow employees with
CF, in spite of their health related disadvantages, to become successful at the workplace?
Are socio-paedagogic supporting measures possible which in the case of conflicts at the workplace support remaining in the job?
It could also be an aim of this socio-scientific investigation to give young adults concrete decision making help in their choice of careers.