Men living with urinary incontinence and multiple sclerosis
Professor Tina Koch (RN, Ph.D.) - RDNS Chair in Domiciliary Nursing, Flinders University of South Australia, GPO Box 2100, Adelaide, South Australia
Debbie Kralik (RN, MN, MRCNA) - Research Associate, Royal District Nursing Service (SA Inc), 31 Flemington Street, Glenside, South Australia 5065
Shayne Kelly (RN, BSc), Continence Nurse Advisor, Royal District Nursing Service (SA Inc), 31 Flemington Street, Glenside, South Australia 5065
For people with Multiple sclerosis (MS), urinary incontinence can become central to their experiences of managing the consequences of the disease. The Research Unit at the Royal District Nursing Service in South Australia conducted a study that aimed to understand how people living with multiple sclerosis manage urinary incontinence between October and December 1998. This paper reports the findings from a participatory action research group with four men who lived with MS and urinary incontinence, two Continence Nurse Advisors (CNA's) and the researcher. Incontinence was found to be a subject that men had previously found difficult to talk about. Themes that emerged from the conversations with the men were; planning your life around toilets, today will not be the same as tomorrow, managing myself, motivated to make changes. The men and the CNA's experienced a valuable exchange of knowledge about living with incontinence. We consider it essential that the voices of these men are clearly heard so that health care providers may be responsive and sensitive to their clients needs.
In this paper, we report the findings of research with men who live with multiple sclerosis (MS) and urinary incontinence. This study was part of a larger project that aimed to understand how men and women who live with MS manage urinary incontinence. The study was conducted by the Research Unit at the Royal District Nursing Service in South Australia between October and December 1998. Four men who lived with MS and urinary incontinence, the researcher (second author), and two RDNS Continence Nurse Advisors (CNAs) met a total of five times for two hours each meeting.
Multiple Sclerosis (MS) is a disease characterised by disseminated demyelination of nerve fibers of the brain and spinal cord. The myriad of symptoms result from an auto-immune attack on the insulating myelin of the nerves which causes a disruption of nerve impulses in the brain and spinal cord, and hence the involuntary release of urine or faeces may occur. Incontinence is experienced by people with MS as urge incontinence accompanying a neurogenic bladder. In addition, persons with multiple sclerosis have lost sensory enervation of the bladder as well as co-ordination of the detrusor and pelvic floor muscles1. Instability incontinence occurs when the detrusor contracts at inappropriate times.
Urinary incontinence remains widely under diagnosed and under reported because people perceive there to be a serious social stigma that surrounds incontinence2. Meticulous personal hygiene is an expectation of our society, and body waste is perceived as 'dirty'. For this reason, incontinence in adults may be seen as unacceptable3. This stigma, coupled with the belief that incontinence is an inevitable result of the progression of MS, has prevented many people from seeking early treatment4. For people with MS, urinary incontinence can become central to their experiences of managing the consequences of the disease.
The wider study aimed to redress a conspicuous absence in the research literature about MS related urinary incontinence by providing an understanding of how men and women perceive and articulate the implications of this problem. We aimed toward a better understanding of what it is like to live with MS and incontinence, so we can implement best practice in the management of urinary incontinence. We begin this process by carefully listening to people who live with MS, which, we contend, is an essential prerequisite to the provision of more sensitive and responsive health care.
This study builds on a previous pilot project conducted in 1997 when the research team and eight women who lived with MS and incontinence were involved in a participatory action research group5. The women told how they lived with incontinence and found significant benefit in sharing stories. Although incontinence has different meanings for different people6 these women had suffered as a result of incontinence and through participation in the group were able to revise their understandings of effective management. In addition to the management of incontinence, the attention of the group was drawn to the wider implications of incontinence such as the availability and accessibility of public facilities for people living with disability.
The women who had participated in this group felt that the advice gained from each other and the CNAs enhanced their management of incontinence and helped them increase control over their lives. The information exchange was seen as mutually beneficial as the CNAs learned directly from women living with MS what it was like to live with a chronic illness. The CNAs reflected on the women's experiences and were able to assimilate what they had learnt into their nursing practice. A recommendation from the women's study was to expand the PAR research process with a group for men.
A CDROM search was performed and sixteen articles that dealt specifically with multiple sclerosis and incontinence were found. No literature was located which had similar aims to this study. In addition, there seemed to be an assumption that men and women have similar experiences with incontinence because no studies were located which specifically identified the experiences of men who live with multiple sclerosis and urinary incontinence. We had previously researched with women who lived with MS and incontinence and we were eager to explore whether there were different issues in the lives of men.
Diagnosis and continence assessment tools were discussed by several authors7-9. Much of the literature focused on the clinical evaluation of the incontinent individual. This literature was bio medically driven, and offered predominantly surgical, pharmacological and non-invasive therapeutic interventions 10, 11.
Non invasive therapies (conservative management routines) included biofeedback, bladder training, habit training, pelvic muscle exercises, prompted voiding and dietary interventions 12. In this literature non-surgical interventions included intermittent catheterisation 13-17. Pelvic floor exercises 18 and dietary intake 19 were the preferred treatment modalities for nurse clinicians. Continence aids were identified as an important resource in long term management of incontinence 14, 19-21. Despite the extensive literature that focused on incontinence, there was scant knowledge to assist clients and nurses in the management of incontinence for people living with MS.
Miller and Neuhauser22 presented a case study of a woman with multiple sclerosis and described an interdisciplinary negotiated approach to management of incontinence that included the client and family members. The philosophy of a client centred approach to continence management was also suggested by several authors 18, 23, 24. The intermittent nature of urinary incontinence in clients with multiple sclerosis was recognised as a client and nurse management problem, and clients, as noted by Lloyd 23, 24, often devise ways of managing incontinence that suit their social and psychological needs.
Further research in the area of continence management for men and women with multiple sclerosis was seen by RDNS as a matter of urgency. The literature, although scant, suggests that client involvement is crucial to the success of any therapeutic interventions.
PARTICIPATORY ACTION RESEARCH
Participatory Action Research (PAR) is a method of qualitative inquiry that is consumer based and focused. It is an approach that embraces principles of participation, reflection, empowerment and emancipation. Creating positive social change for the participants is the predominant driving force. While being a collaborative and reflective process, it promotes knowledge among the participants and provides them with a means to systematically investigate their problems and issues 25. We noted the positive outcomes of the women's study cited earlier and we were keen to try this approach with men who lived with multiple sclerosis.
The approach described by Stringer 25 was seen as the most useful for this project. This approach favours consensual and participatory procedures that enable the participants to set their own agenda, and to prioritise issues they wished to discuss. The process of PAR encourages participants to systematically investigate their problems and issues, formulate experiential accounts of their situations, and to devise plans to deal with the problems at hand. Incorporating grassroots initiatives with change-oriented strategies, PAR maximised people's involvement in knowledge building on behalf of their own development.
Stringer 25 suggests that relationships in PAR should: promote feelings of equality for all people involved, maintain harmony, avoid conflicts, resolve conflicts that arise, accept people as they are, encourage personal, co-operative relationships rather than impersonal, competitive, conflictual or authoritarian relationships and be sensitive to people's feelings. These issues were discussed at the commencement of the first session with participants, and identified as 'group norms'. The research method is praxis in the sense that the process is emancipatory for the men at the time the research is occurring.
The literature which explores the PAR process and group dynamics is prolific, however we noted that much of the literature appeared to ignore the construction of meaning in the process of the discussion within a PAR group. We noted in our previous study that interaction in the group followed a continuous process of negotiating meaning. By that, we mean that meanings were not fixed, but negotiated within the conversations. It is important to say that each person started in the group with their own interpretations and experiences. For instance, the men did not come to the group with the 'meaning of living with urinary incontinence' firmly embedded in their thoughts and ready to be articulated, but rather during the group interactions, there was an unravelling of what living with urinary incontinence meant to them. Together with participants, we created meanings through conversation in which we compare and contrast our various interpretations.
In addition to seeing and to listening, as researchers we record the progression of our experiences and self-awareness in a journal, recognised as the reflective arm of the PAR process. Our experiences are data drawn into the research process. This is the 'reflection' in PAR when the researchers and participants examine and construct their concerns and give meaning to their individual experiences.
The PAR group included four men who had volunteered to be involved in the research and three members of the research team. The group met for two hours fortnightly for five meetings. Refreshments were provided. The meetings were held at a central location with facilities for disabled people.
At the first meeting, the men were encouraged to talk about themselves as the researcher posed the following questions: Can you tell us about yourself from the time you first experienced urinary incontinence to the present time? What sort of changes did you make to your life since this development? What do you think assisted you to develop strategies to manage your incontinence? Can you identify some things you do or experience that make you feel well? Once discussion was initiated, the men verbalised issues within their lives that they would like to share and in this way set their own agenda for further discussions.
ANALYSIS OF DATA
The researchers hand-written notes, which included both the meetings proceedings and her reflections, were typed and analysed using a descriptive-exploratory method that involved highlighting and extracting themes. These themes were then discussed with members of the research team. At subsequent meetings, the feedback loop in the PAR process meant that participants were presented with the research team's construction of themes and issues. Reporting analysis to participants also invites their participation in constructing the research 'findings' and enabled the men to validate the researchers interpretations. There is no need to seek consensus in PAR groups; divergence of opinion is an equally useful finding. Also, it should not be assumed that people who have shared the objective features of a situation share a set of meanings about that experience.
The first author is the principle investigator, the second author is the researcher, and the third author is a Continence Nurse Advisor who also facilitated the meetings. Following each session, the CNA and the researcher met to discuss the events of the group. We shared observations and insights. The researcher took notes throughout the meetings and wrote significant statements verbatim. The men came to the group after reading an invitation to participate in the research which was placed in the Multiple Sclerosis Society (South Australia) Newsletter, and the RDNS CNAs extended a personal invitation to past clients. The RDNS Ethics Committee approved the study and the names used in this paper are pseudonyms.
The participants were four men who lived with MS and incontinence.
They are Denis, Steve, James and Thomas and ranged in ages from 48 to 62
years. The men had varying degrees of incontinence and disability.
Steve used a wheel chair, but was able to weight bear. The other
men walked without aids. Denis and Steve had previously sought advice
about how to manage their incontinence and as a consequence, Steve practised
intermittent self-catheterisation. Although James and Thomas had
known each other prior to participating in this study, they had not previously
discussed each other’s experiences with incontinence, because they perceived
it was an issue that men ' ... just don't talk about'. Prior to joining
the group, Thomas felt he might have been:
… a little over sensitive about the subject... it's not a subject that guys talk about. Even in the urinal you just look straight ahead, and never to the person beside you. That is an unwritten law.
The title of emergent themes discussed in this paper are the men's own words. They are: planning your life around toilets, today will not be the same as tomorrow, managing myself, motivated to make changes.
Planning your life around toilets
Managing incontinence within their lives had meant that participating in social outings depended on the availability of toilets. The location of toilets was a foremost consideration before the men left home and into the community. Alternatively, they sought and found a toilet as soon as they arrived.
James explained that he would wait at home to go to the toilet before he goes outside the house. James was hesitant to walk to the local shop to purchase the morning paper, for fear of not being able to find a toilet in time:
I have less than a minute to get to the toilet ... if I don't make it, I wet myself. That's why I wait at home in the mornings until I go to the toilet.
James told how he often had little warning when he needed to urinate and he felt this urgency placed restrictions on his lifestyle. James came to the group wanting to learn how he could extend the time from when he feels the sensation to urinate, to when he can actually urinate. He described feelings of anxiety when he was in crowded places and feared he may not get to the toilet in time. These fears and anxieties meant James no longer attended football matches or large shopping centres because toilets were too far away.
James also shared how he experiences incontinence when he changes position after sitting down for a period of time. He provided the example of when he goes for a drive in his car. While sitting down he does not feel he has to go to the toilet, however once he stands from the car, he has the immediate sensation of having to urinate. Thomas and Denis agreed that movement exacerbates urinary urgency. Thomas described how at times bending over would cause him to 'leak' some urine.
Each of the men agreed with Denis when he explained how he plans his life around the location of toilets, because before he goes anywhere, he will know where the toilets are, or they are the first things he will look for if he goes to a new place.
Today will not be the same as tomorrow
The men agreed that each day is different with regard to urinary urgency. Denis told how 'the messages from the brain don't seem to get to the spot... no two days are ever the same'. This caused unpredictability in their lives as they found it difficult to plan. James found that since he had left paid employment, life was easier. He could plan and organise his daily activities around his urinary urgency. Thomas told how he had made the mistake of thinking that he will be able to 'hold on' to his urine, and has then ‘wet’ himself. Steve told how he never knows what the day will be like in regard to his urinary incontinence and so will always carry a urinary catheter in his pocket 'just in case'.
The men talked about managing fatigue as being a large part of their lives. The level of fatigue that the men were feeling on any particular day had an effect on the degree of urgency they experienced. The men talked about maintaining a balance between rest and activity in an effort to reduce the fatigue they experienced.
The men perceived that living with MS and urinary incontinence meant they no longer had control of their body, however they agreed that they did have dignity, although at times incontinence pushed their sense of dignity to the extreme limit. Maintaining their dignity and avoiding the embarrassment of wetting themselves meant learning strategies for managing their incontinence. Strategies included regulating oral fluid intake, reducing caffeine and alcohol intake, and making excuses to others about their frequent visits to the toilet.
Thomas told how he would not drink for one and a half hours before leaving for work, and told of occasions when he had thought he would be able to 'hold on' and the devastation and humiliation he had felt when he had wet himself. Steve used a urodome at night to avoid a wet bed. He had worked out a way to apply the urodome so that it would not dislodge during the night. Steve practised clean intermittent catheterisation, and would always catheterise himself before going out. If he was out for a long time, he would leave the catheter in and attach a leg bag to avoid being incontinent. Steve always carried a spare catheter in his pocket 'just in case' he needed it. Steve found catheterisation had enabled him to gain control over his incontinence, and for this reason was liberating for him.
Incontinence was initially a large problem for Denis. He found that reducing his caffeine intake had dramatically reduced his urinary urgency and frequency. He previously had consumed a large amount of coffee but now only used coffee substitutes.
James said he would always 'manage' himself in the mornings, by waiting at home to go to the toilet before he went out. He also said he would try to reduce his fluid intake so he would feel more confident in getting through his day without the very real threat of incontinence.
Each of the men had stopped drinking alcohol because they found it had
increased their urinary urgency and frequency. With humour Denis
I stopped drinking [alcohol] because I never heard the punch line to jokes ... I was always in the toilet...[alcohol] made me more unsteady on my feet and I don't need any help to fall over.
Thomas said he had 'learnt to lie and cheat a lot'. He did not tell people the truth about his frequent visits to the toilet because few people knew he had MS. He told how he had previously 'splashed water' onto the front of his trousers or carried his jumper in front of him to cover wet marks.
Motivated to make changes
In this theme, we can see clearly how the men set their own agendas, and through analysis of their own problems and issues, were motivated to make changes to their lives. The men agreed with Thomas, that 'to concentrate all the time on MS is boring', however two men in the group had never sought assistance with their incontinence, and there appeared an alarming lack of knowledge. The men were motivated to learn more about devices they could use for managing urinary incontinence and they requested that the Continence Nurse Advisor show them some appliances. The CNA showed the men some of the devices available which generated great interest and two of the men were motivated to try some of the 'penis pouches' that the CNA had shown them. James and Thomas, in particular were encouraged by the prospect of using the pouch, and the difference it could make to their lives. The men reported back that they had gone out together socially one evening, where they had 'a meal and a couple of glasses of beer'. This would usually have caused Thomas considerable stress because he was aware that alcohol greatly increased his sense of urinary urgency and frequency. He happily reported that he did not visit the toilet for the entire evening until he had returned home. Thomas said that without the 'penis pouch' in place, he would have visited the toilet several times throughout the evening because he would have been worried about dribbling or urgency and so would have 'tried to keep the bladder empty'.
With a view to helping the other men, Denis explained that when he felt anxious about not making the toilet in time, he would try to calm himself down, and distract his thoughts of wanting to go to the toilet. He had invented a game doing this, and he believed it helped him extend the time he needed to reach the toilet. Often if Denis needed to go to the toilet before driving home from work, he would make himself 'hold on'. Thomas and James said this made sense to them because they felt they had reduced their bladder capacity by going to the toilet frequently with the aim of keeping their bladders empty.
Each of the men had intermittently experienced times when they felt that they had not completely emptied their bladder. It felt like there were 'some drops of urine still left in the penis' and it was these 'drops' that sometimes leaked out and caused an embarrassing wet spot on their trousers. Thomas asked about the possibility of 'milking his penis'. The CNA offered some advice and they were relieved there were answers to a problem they felt was theirs alone.
From awareness of a problem came the decision to develop a strategy
to enable James to feel in control of his incontinence. 'I enjoy
life too much to remain at home in fear'. After consulting with the
participants in the group James chose the following action plan.
During the course of the meetings, James significantly reduced his caffeine
intake. He had previously enjoyed several cups of tea each day, and
was motivated by the experiences of Denis, that he would experiment with
reducing his caffeine intake. Denis had told him that 'caffeine is a killer'.
He purchased a particular caffeine reduced tea that was recommended by
other members of the group as tasting the same as 'normal' tea. James
was delighted with the effect of a reduced caffeine intake. His sense
of urgency was significantly reduced that same day. James also reported:
the number of times I have had to wake during the night [to urinate] has reduced as well. Last night I slept through the night, which was the first time for a very long time.... before I was waking three times a night to go to the toilet.
After discussing James's problem about driving long distances and then feeling a great sense of urgency once he stood up, the men advised James to have a bottle in the car. Denis said he carries an old cordial bottle with a lid in his car, and although he rarely needs to use it, it gives him 'confidence and comfort in knowing it is there should the need arise'.
DISCUSSION AND RECOMMENDATIONS
This research was initiated with the intention of gaining a better understanding of how men who live with MS manage urinary incontinence. By applying the principles of PAR, the men who participated in this group and the CNA's experienced a valuable exchange of knowledge about living with incontinence. In keeping with the research aim to bridge the absence in research literature about MS related urinary incontinence, we considered it essential that the voices of these men were heard so that health care providers may take account of the issues raised and will use the findings to inform their future practice.
The men in this group recognised that incontinence was an experience that they had not previously been comfortable in talking about. Men do not offer the information freely about living with incontinence, and therefore as health professionals, we may need to broach the subject with them. Two men who participated in this group had never previously spoken about their incontinence. Talking had enabled the men to recognise areas in their lives that may benefit from changes; they then felt empowered to make those changes.
Previous studies have identified that one way that people managed their urinary incontinence was by restricting their social activities 26, 27. The men in this study shared how their social activities had been restricted because they were fearful of being incontinent in public. Through the process of PAR, the men were able to reflect on the ways that incontinence had imposed on their lives, and by systematically investigating their problems within the group, positive change was created.
The men involved in this PAR group had developed strategies for managing their incontinence. Denis told how he had developed a game, where he aimed to extend the time needed for him to urinate. These strategies for self-management 'made a lot of sense' to the other participants in the group who then incorporated them into their own lives. By listening closely to clients as they tell of their experiences, health professionals can pass this relevant knowledge onto other clients.
It was common practice for the men to regulate their oral fluid intake as a means for gaining control over their incontinence. Avoiding the feelings of humiliation associated with being incontinent in public was so important that the men dehydrate themselves despite understanding the potential detrimental effects this could have on their physical well being. Health professionals should not underestimate the strategies that their clients use for gaining control and how important it is for the individual to avoid incontinence.
We contend that much of the literature concerned with the experiences of people who live with chronic illness is gender neutral. We need to explore whether there are different issues in the lives of men and women who live with chronic illness and suggest this be considered when planning future chronic illness research.
Living with adult incontinence can be restrictive, inconvenient, cause distress, embarrassment and humiliation. The process of learning to successfully manage urinary incontinence within ones life can have a liberating effect. We observed the process of PAR to promote knowledge among the participants as they learned from each other in a non-threatening, relaxed atmosphere where the knowledge exchange was relevant and constructive to their daily lives. The PAR process provided the men, together with the CNA's, the opportunity to systematically investigate their problems and issues which bought about positive change. Talking about negative experiences bought about positive action.
The authors wish to acknowledge the men who participated in the study,
Esther Tennent, Jane Neill, the Multiple Sclerosis Society (South Australia),
and the assistance of a Health Enhancement Research Grant, South Australian
1. Gray M, Dougherty M, Green B. Urinary Incontinence-Pathophysiology and Treatment. Journal of Enterostomal Therapy 1987;14:152-62.
2. Wyman JF, Harkins SW, Fantl JA. Psychosocial Impact of Urinary Incontinence in the Community-Dwelling Population. Journal of the American Geriatric Society 1990 March;38(3):282-8.
3. Newman DK. The Treatment of Urinary Incontinence in Adults. Nurse Practitioner 1989 June;14(6):21-32.
4. Goldstein M, Hawthorne M, Engeberg S, McDowell J, Burgio K. Urinary Incontinence: Why People Do Not Seek Help. Journal of Gerontological Nursing 1992;18:15-20.
5. Koch T, Kelly S. Understanding what is important for women who live with multiple sclerosis. Australian Journal of Holistic Nursing 1999;6 No.1:14-24.
6. Wong L. Incontinence has different meanings for different people. The Australian Journal of Advanced Nursing 1995 Spring;13(1):6-15.
7. Catanzaro M, O'Shaughnessy EJ, Clowers DC, Brooks G. Urinary bladder dysfunction as a remedial disability in multiple sclerosis: a sociologic perspective. Archives of Physical Medicine and Rehabilitation 1982;63:472-4.
8. Qualey TLJR. An approach to elderly incontinence. Nursing Management 1995 April;26:48q,48s,48t.
9. Woodward S. Assessment of urinary incontinence in neuroscience patients. British Journal of Nursing 1995;4(5):254-8.
10. Anderson RU. Current research and investigational procedures in neurogenic bladder. Neurogenic Bladder 1993 May;4(2):363-76.
11. Chancellor MB, Blaivas JG. Diagnostic evaluation of incontinence in patients with neurological disorders. Comprehensive Therapy 1991;17:37-43.
12. Fonda D, Woodward M, D'Astoli M, Chin W. The Continued Success of Conservative Management for Established Urinary Incontinence in Older People. Australian Journal on Ageing 1995;13:12-6.
13. Maynard FM. Long term management of neurogenic bladder:intermittent catheterization. Neurogenic Bladder 1993 May;4(2):299-310.
14. Langford R. Keeping control. Nursing Times 1994 July 6;90(27):58,60.
15. Sibley L. Confidence with incontinence. Nursing Times 1988 Nov 16;84(46):42-3.
16. Stover SL. Epidemiology of neurogenic bladder. Neurogenic Bladder 1993 May;4(2):211-20.
17. Stover SL. Management of Bacteriuria and infection in neurogenic bladder. Neurogenic Bladder 1993 May;4(2):343-62.
18. Henderson J s. A pubococcygeal exercise program for simple urinary stress incontinence: applicability to the female client with multiple sclerosis. Journal of Neuroscience Nursing 1988 June;20(3):185-8.
19. Chalmers C. A psychological approach. Nursing Times 1993 November 24;89(47):68,71,73-74.
20. Kinn AC, Larsson PO. Desmopressin:A new principle for symptomatic treatment of urgency and incontinence in patients with multiple sclerosis. Scandinavian Journal of Urology and Nephrology 1990;24:109-12.
21. Brown J, Thomas E, White H, McCallum A. An incontinence helpline service. Nursing Standard 1991 June 12;5(38):25-7.
22. Miller DM, Neuhauser D. Continuous quality improvement and the care of persons with multiple sclerosis: two case studies. Journal of Neurological Rehabilitation 1995;9:7-13.
23. Lloyd KL. Long term management of neurogenic bladder: an eclectic approach. Neurogenic Bladder 1993 May;4(2):329-42.
24. Lloyd KL. Long term follow up of neurogenic bladder. Neurogenic Bladder 1993 May;4(2):391-409.
25. Stringer ET. Action research a handbook for practitioners. Thousand Oaks, California: Sage publications, 1996.
26. Mc Grother C, Castleden C, Duffin H. Do the elderly need better incontinent services? Community Medicine 1987;9:62.
27. Mitteness L. The management of urinary incontinence by community living elderly. The Gerontologist 1987;27:185