Summary: Debra Evans reports the results of explanatory research that explored the impact of continence problems on the ability to work.
Source: This article was adopted from Association for Continence Advice Journal.
Author: Debra Evans, information and knowledge manager, PromoCon, Disabled Living, Manchester.
I am the information and knowledge manager at PromoCon, an integral service of Disabled Living, which provides impartial advice and information about continence products and services. I am aware of an increase in the number of people with bladder or bowel problems who are finding it stressful to manage their continence issues while at work.
There are a few published studies that explore the relationship between continence issues and work (Fitzgerald et al, 2002; Palmer and Fitzgerald, 2002; Kirkland et al, 2001; Fitzgerald et al, 2000).
A survey conducted in 1995 highlighted that incontinence had a significant effect on working lives (Smith and Nephew, 1995).
Irwin et al (2006) conducted a cross-sectional population-based survey of 11,521 people aged 40-64 with overactive bladder (OAB) symptoms in six European countries. Men are significantly more likely than women to report OAB with incontinence as having an impact on daily work life.
There is a relationship between continence problems and disability. A ‘disabled person’ is defined as someone with ‘a physical or mental impairment that has a substantial and long-term adverse effect on her or his ability to carry out normal day-to-day activities including continence’ (Disability Rights Commission, 2004).
Since October 2004, it has been unlawful for any employer to discriminate against a person who is disabled because of her or his disability Disability Discrimination Act 1995). Employers have to make reasonable adjustments for staff who are disabled (DRC, 2004), including changes to the environment or working practices – but the employer needs to be aware of an employee’s problem.
Aims and method
This study is explanatory research to determine the impact of continence problems on a person’s ability to work.
Other complications include pain, tissue trauma, bleeding, inflammation, stricture formation, meatal and bladder neck erosion, and altered body image (Getliffe, 2003).
Convenience sampling was used. People aged 16-65 years with bladder and/or bowel problems who were employed or who were not working due to continence issues being a major contributory factor in their unemployment were included.
Information relating to the study and an invitation to participate were advertised on three continence-related websites: PromoCon; the Continence Foundation; and Incontact. Recruitment information was featured in Incontact magazine and an A4 flyer was distributed to customers of a mail-order company that sells continence products. The flyer was also included with information sent to people who contacted the PromoCon helpline who matched the recruitment profile.
Three men and three women who called the PromoCon helpline for advice and expressed an interest in participating in the study were interviewed by telephone to inform the design and content of the self-completion questionnaire. These interviews were semi-structured and notes were taken.
A self-completion questionnaire of closed questions was designed, with space for respondents to provide additional information. A pilot questionnaire was sent to the six people who participated in the telephone interviews and the questions were modified as a result.
Ethical approval was granted for the study.
The quantitative data was analysed with Statistical Package for Social Sciences (SPSS) for Windows. Fisher’s Exact Test was used for tests of contingency. The analysis of the qualitative data was indexed to identify recurring themes and categories from the respondents.
Results and discussion
Eighty-four people expressed an interest in participating in the study and 62 people responded to the survey, a response rate of 74%.
The number of male respondents (73%) compared with female (27%), may suggest the work environment makes it more difficult for men to manage continence problems. This would support the findings of Irwin et al (2006). However, it is acknowledged that women sometimes expect a degree of incontinence as a result of childbirth or during the menopause.
Twenty-nine percent of people with bladder problems and 55% of those with bowel problems did not have a diagnosis for their symptoms.
Seventy-three percent of respondents highlighted that they had other medical conditions that may result in bladder or bowel dysfunction, for example multiple sclerosis, cancer or spina bifida. Eight percent stated they had depression and 11% had multiple problems including mental health issues such as stress and anxiety.
It is essential that bladder and bowel problems should not be considered in isolation to other health issues, as people with incontinence have a significantly lower health status (Roe et al, 1996).
Ninety percent of the respondents had bladder problems, of whom 82% were incontinent of urine during ‘working hours’. Fifty-six percent of the respondents had bowel problems, of whom 55% were incontinent of faeces during employment hours.
Responses from respondents included: ‘For years I coped with working away, shift work and travelling using a combination of disposable pads or towelling nappies/plastic pants in appropriate situations. I always had to do laundry at unusual hours and lived in fear of people checking my baggage or searching my cabin on ships’ (former navy officer).
Consultation with healthcare professionals
Ninety-seven percent of individuals had consulted a healthcare professional about their continence problems. Eighty-nine percent consulted their GP and 79% a continence adviser in the first instance, and 73% were then referredto a consultant.
Most individuals (89%) who had spoken to a GP were not asked how they managed continence issues at work. However, in most cases the GP is the ‘signposter’ to a more specialised service.
People can spend up to 60% of their waking hours at work (Health Education Authority, 1997) and how they manage their incontinence at work should be a routine question during a continence assessment. However, 29% of respondents indicated the continence adviser had not raised the issue with them and 55% of those who saw a consultant did not discuss management of their continence issues at work during the consultation.
The document Health, Work and Well-being (Department for Work and Pensions, 2005)
emphasises the significance of ‘supporting and engaging healthcare professionals so they recognise the importance of work for their patients’ well-being and ensure that they can provide the assistance necessary to fulfil their role in helping their patients to remain in and return to work’.
Products
Nearly a fifth (18%) of respondents had never seen a continence adviser and 16% had not seen a continence adviser in the past two years. The Department of Health (2000) highlighted the importance of reassessment (at least yearly) to check that needs have not changed or that a more suitable product has not become available. Healthcare professionals may not be aware that a slight variation in product design will offer patients considerable benefits. One respondent noted: ‘I have asked for advice on products at my local surgery and at the clinic at the hospital and was just told, “wear what you are comfortable with”. Unfortunately, I do not know what is available’ (nursery nurse).
Respondents were concerned that products were not discreet (48%) and they would leak (57%). Coming out of a customer’s loft, the hatch caught on my shirt and lifted the back revealing the top of my waterproof pants and pad to the chap holding the ladder’ (architect).
Seventy-three percent of respondents were men and the majority used disposable pads. This may be because of a lack of information about alternatives such as sheaths and leg bags and body-worn urinals. Men may also lack confidence in a product design because of a bad experience.
‘I have had problems with sheaths leaking and also had a leg bag with a hole in. I keep pads etc in the boot of my car. One day I had a kink in the end of my sheath and it “blew off” wetting the chair and the floor as well as me’ (railway worker).
Taking products to the toilet (73%) and disposing of soiled pads (74%) has been highlighted as a major issue, especially for men.
‘Difficult to justify taking your bag with you to the loo. Looks like you don’t trust them [the customers]!’ (architect).
‘I took to shredding the pulp of the wet pads and flushing it down the loo, just bringing the plastic outer back and putting it into an envelope. This once blocked the system’ (company director, PR agency).
The lack of disposal facilities in toilet cubicles were highlighted, as well as the lack of bins and paper towels as electrical hand dryers had been installed.
Work status
The majority (85%) of respondents were working, of whom 66% were employees and 18% were self-employed. Most (70%) were in full-time employment, and 38% of respondents were managers or from professional occupations. Incontinence does not have socio-economic boundaries but higher qualifications or career status may offer more opportunities for people with bladder or bowel problems to consider alternative employment.
‘Since working from home, teaching, I have been more “in control” of my day-to-day management’ (schoolteacher).
‘Due to my work as a nurse, I found my working life was very much affected by my continence problems, which in turn contributed to me leaving the NHS. I now work in an office-type environment and I have found it easier to accommodate my continence problems with regard to frequent visits to the toilet’ (office manager and former nurse).
The study attracted respondents who worked in educational settings, such as nursery nurses, teachers and lecturers. The subject, age of the children taught or the staffing structure within the school had an impact on their ability to manage effectively.
‘I worked as a science teacher – this presented real problems. It was difficult to leave a class in mid-lesson with Bunsen burners, acids and alkalis in use to use the toilet. Colleagues would complain about my classes waiting outside my locked room when I disappeared to use the toilet urgently between lessons’ (former science teacher).
Respondents highlighted work practices that they found especially stressful, particularly attending and chairing meetings.
‘Quite frequently, I sit in on site meetings which can last for hours and I am aware of the awkward glances when I get up to go to the toilet, so I foolishly restrict my visits. My main anxiety here is trust in the pad and noise – rustling, sound of water passing etc’ (engineer).
Of significant interest is the proportion of respondents (15%) not working due to continencerelated issues. Nearly all (98%) of these were claiming incapacity benefit.
The government is planning to reduce the number of incapacity claimants by one million in 10 years (DWP, 2006), and it is very important that support mechanisms are incorporated into workplace policies to retain staff who may be at risk of leaving due to ill heath. Consideration should also be given to the needs of future employees with disabilities or particular health needs.
More than one-third (37%) of respondents indicated that continence problems might affect their promotion prospects. A further concern to respondents, which may be linked to opportunities for career development, was anxiety caused by training courses.
Sickness absence
Fifty percent of the respondents indicated that their bladder or bowel problems had resulted in sick leave. Just over one-fifth (21%) had taken over a month’s sick leave in a two-year period, with 5% being absent from work for over six months.
Respondents were concerned about the times they were absent from work for GP and hospital appointments. A number of GP surgeries have changed appointment procedures and stopped offering advance bookings, which caused additional problems.
Nearly one-quarter (24%) of respondents did not tell their employer that their sick leave was due to continence issues and cited other medical conditions, probably because of embarrassment. This leads to under-reporting and masks the prevalence of what is still a taboo subject (Continence Foundation, 2000).
Fifty percent of respondents reported no absence from work due to ill health. However, Hemp (2004) draws our attention to ‘perspective presenteeism’ – the problem of employees being at the workplace but performing suboptimally due to health issues – and suggests ‘it may be a greater drain on productivity than absenteeism’.
‘On a bad day, it is very hard work to concentrate on the business in hand whilst being aware of “trouble down below”!’ (business strategy consultant).
‘Tiredness at work due to getting up at 04.45 hours in order to irrigate through a PEC tube’ (accounts clerk).
Work relationship
- Managers Nearly half (48%) of the respondents had made their manager aware of their continence problems, with 45% confiding in chosen colleagues. A greater proportion (52%) had not disclosed their incontinence to anybody at work. Respondents were concerned that they might not receive support. Nineteen percent did not trust managers at work to keep information confidential, 17% were concerned they would be the subject of ridicule, 15% thought they might be treated differently from other staff, 27% said they would be embarrassed to discuss continence problems with their manager and 12% were concerned that the manager would also be embarrassed.
- Occupational health professionals More than one-third (36%) of respondents had access to occupational health services but decided not to disclose their continence problems. Fifteen percent said they did not trust occupational health staff to keep information confidential, indicating that employees do not fully understand the role of these professionals in relation to confidentiality. When respondents had confided in occupational health services, experiences were positive.
‘Employers’ reaction fine – health centre took confidential notes, followed up a few months later by an interview, with occupational people checking facilities are OK’ (senior lecturer).
Nearly one-third (32%) of respondents did not have access to occupational health services. Only 15% of British firms provide basic occupational health support and only 3% provide comprehensive support (Institute of Occupational Medicine, 2002). The DWP and DH acknowledge this and have committed to ‘achieve access to competent health advice and support for all employees’ (DWP, 2005).
- Colleagues The questionnaire did not specifically ask respondents to discuss emotions in relation to continence issues. However, qualitative data relating to nondisclosure to colleagues revealed issues that cannot be overlooked.
Fear and embarrassment about the possibility of ‘having an accident’ can lead to social isolation and depression. Ashworth and Hagan (1993) suggest incontinence is a ‘threat to adult status, a highly distressing threat to one’s self-esteem being associated with disgusting imagery’. Individuals work hard to keep problems a secret for the fear of stigma. The fear of being treated differently is real.
‘Now I just feel so dirty and humiliated and embarrassed. I say nothing to anyone if at all possible. While writing this, I can feel myself getting very weepy again’ (nursery nurse).
‘My working life has been lonely and limited due to being incontinent’ (gardener).
Toilet facilities and disability
Toilet facilities were of significant importance. Sixteen percent of respondents were wheelchair users. Fifty percent of respondents had access to disabled toilet facilities and 45% used them.
Fifty-five percent of respondents did not consider themselves disabled, even though incontinence is highlighted as a disability in the Disability Discrimination Act 1995. In spite of this figure, over three-quarters (78%) of respondents stated that incontinence is disabling.
Good practice for employers
The majority of respondents (79%) suggested that employers should ensure adequate toilet facilities were available, with 84% highlighting the importance of disposal facilities in toilets. An adequate supply of toilet paper was highlighted by 55% and 53% suggested air fresheners in cubicles. In relation to work practices, 49% considered regular comfort breaks essential and 55% thought there should be a company policy that staff should not have to share rooms when working away from home.
A sticker or poster on the back of toilet cubicle doors directing staff with continence problems to healthcare professionals was suggested by 40% of respondents, and 58% suggested a health promotion display during continence week.
Conclusions and recommendations
There is no doubt that incontinence is associated with stigma and, for many, it is a still a taboo. Diverting the subject from the medical arena to the work environment may be uncomfortable but it is essential if people are to achieve a healthy work/life balance with the ultimate goal of an improved quality of life. The respondents identified a number of environmental and workpractice issues that can easily be addressed without significant cost to employers. Attitudes of colleagues, which some may consider to be outside the remit of an employer ’s jurisdiction, may take a little longer.
There is evidence to suggest that a general awareness-raising initiative among employers, human resource professionals and occupational health staff would be beneficial. This would give individuals who are responsible for employee well-being the opportunity to acquire the knowledge, skills and understanding required to offer practical support and a sensitive approach.
Generally, healthcare professionals should collaborate with occupational health specialists to discuss the development of integrated services. Likewise, occupational health professionals need to raise their profile among the general public and inform them of their role in the employment structure, as well as making sure that employees know they can be assured of confidentiality.
A further recommendation is directed at disability employment advisers and their need for training to identify incapacity claimants who may have continence problems that they are masking with other health-related problems.