International Journal of Nursing Practice 2001; 7: 16–23

INTRODUCTIONIn this paper, we report the findings of research withwomen who live with multiple sclerosis (MS) and urinaryincontinence. This group was part of a larger project conducted between June 1998 and June 1999 by the Royal

District Nursing Service (RDNS) in South Australia thataimed to understand how men and women who live withMS manage urinary incontinence. Four women who livedwith MS and urinary incontinence, the researcher (DK)and two Continence Nurse Advisors (CNAs; SE and AS)met on five occasions for 2 h each meeting.

THE AIMSThe initial aims of the study were to address a noticeableabsence in the research literature about MS related

✠ R E S E A R C H P A P E R ✠

Breaking the silence:Women living with multiple

sclerosis and urinary incontinence

Tina Koch RN, PhD RDNS Chair in Domiciliary Nursing, Flinders University of South Australia, Adelaide, South Australia, Australia

Debbie Kralik RN, MN, MRCNAResearch Associate, Royal District Nursing Service (SA Inc), Adelaide, South Australia, Australia

Sue Eastwood RN, RPN, BNg, MRCNAContinence Nurse Advisor, Royal District Nursing Service (SA Inc), Adelaide, South Australia, Australia

Ann Schofield RN, RM, DipHlthCounsContinence Nurse Advisor, Royal District Nursing Service (SA Inc), Adelaide, South Australia, Australia

Accepted for publication December 1999

Koch T, Kralik D, Eastwood S, Schofield A. International Journal of Nursing Practice 2001; 7: 16–23Breaking the silence:Women living with multiple sclerosis and urinary incontinence

This study examined women’s understandings of living with multiple sclerosis (MS) and urinary incontinence and thechallenges they have encountered in their day-to-day lives. As health-care professionals, we aimed to understand howpeople living with MS manage urinary incontinence.This paper reports the findings from a Participatory Action Research(PAR) group with four women, the researcher and two Continence Nurse Advisors (CNAs).The group met on five occa-sions between March and June 1999. The women’s stories held personal and gendered meanings about living with MSand urinary incontinence. Four themes were derived from the transcripts: maintaining control; seeking understanding;avoiding shame; and good and bad days.The women and the CNAs benefited from an exchange of knowledge about livingwith MS and incontinence. The CNAs became sensitive to the women’s experience and have been able to incorporatethese understandings into their practice. By sharing our research we hope the findings may be more widely incorporatedinto sensitive health practice.

Key words: MS, participatory action research, qualitative, urinary incontinence, women.

Correspondence: Professor Tina Koch, RDNS Chair in Domiciliary

Nursing, Flinders University of South Australia, GPO Box 2100,

Adelaide, SA, Australia. Email:Tina.Koch@flinders.edu.au

Women with MS and urinary incontinence 17

urinary incontinence by providing an understanding ofhow men and women perceive and articulate the implica-tions of this problem.We aimed to understand better whatit is like to live with MS and incontinence, in order toimplement best practice in the management of urinaryincontinence. We decided the most appropriate place tostart this process was to listen to people who live withMS, which is essential if sensitive and responsive healthcare is to be provided.

BACKGROUNDThis study builds on a previous pilot project conducted in1997 when the research team and eight women who livedwith MS and incontinence were involved in a participa-tory action research (PAR) group.1 The women told howthey lived with incontinence and found significant benefitin sharing stories. Although the starting point for talkingwith women was urinary incontinence, we discovered thatthe women wanted to talk about their lives and living withMS. It became clear that incontinence had different mean-ings for different people. These women had suffered as aresult of incontinence, and through participation in thegroup were able to revise their understandings of effec-tive incontinence management.The women who had par-ticipated in this group felt that the advice gained from eachother and the CNAs enhanced their management of incon-tinence and helped them increase control over their lives.The information exchange was seen as mutually beneficialbecause the CNAs learned what it was like to live with achronic illness. The CNAs reflected on the women’s ex-periences and were able to assimilate what they hadlearned into their nursing practice.

In addition, the following themes were raised by the women: their ad hoc experience with community ser-vices; their problems concerning access to toilets for the disabled; concern with health professionals’ lack of knowl-edge about MS; their formidable experiences of hospitali-zation and respite care admissions; their individual effortsin maintaining a sense of wellness in the context of chronicillness; and the effect of MS on sexual relationships.Whenthe women realized that they had suffered alone and insilence, they felt empowered to act.

We will give just one example of the resultant actiongenerated by the women. Finding public toilets that couldsatisfactorily cope with wheelchairs was one of the manyproblems raised and acted on. Once the women werearmed with additional information, they lobbied politi-cians, architects, local councils and building inspectors

about disability toilet access and listed the inadequacies indesign and lack of compliance of some toilet facilities inpublic places. In terms of health enhancement, the mostimportant outcome was that the women had formed aself-help group and wanted to meet with each other afterthe research had run its course. The ‘wellness’ themereferred to their individual efforts in maintaining a senseof wellness in the context of chronic illness. This was atheoretically ‘new’ discovery, and as an emerging theme,led us to continue with further research with women uti-lizing PAR groups, hence the development of this PARgroup.

The RDNS Research Unit is also conducting PARgroups with people who live with diabetes and thereappears to be gender differences: women found diabetesintruded on their lives, whereas men worked toward min-imizing the intrusiveness of having diabetes.2,3 We wantedto explore if these differences were apparent for peopleliving with MS. We have conducted one group with menwho live with MS and, although there are some genderedobservations, additional data is needed from other groupsbefore this can be said with confidence.The present studyis the second group with women who live with MS. Thefindings of a PAR group with men who live with MS andincontinence has been reported previously.4 Although tentative, we are building a theoretical base for wellnessin chronic illness while making inroads into genderedresponses to living with a chronic illness.

LITERATURE REVIEWMultiple Sclerosis is a disease that involves disseminated,demyelination of nerve fibres of the brain and spinal cord.The many symptoms are as a consequence of an autoim-mune attack on the insulating myelin of the nerves whichcauses a disruption of nerve impulses in the brain andspinal cord; urine or faeces may be released involuntarily.5

People with MS usually experience urge incontinenceaccompanying a neurogenic bladder and may have also lostsensory enervation of the bladder as well as coordinationof the detrusor and pelvic floor muscles. If the detrusorand pelvic floor muscles contract at inappropriate timesincontinence occurs.

There continues to be a serious social stigma sur-rounding incontinence and, for this reason, it may remainunderdiagnosed and underreported.6 The inability of anadult to contain body fluids is unacceptable in our societybecause a high standard of personal hygiene is expectedand body waste is perceived to be unclean.7 This stigma,

18 T. Koch et al.

coupled with the belief that incontinence is an inevitableresult of MS, may prevent people from seeking early treat-ment.8 Urinary incontinence can become central to theindividuals experiences of managing MS, as the previouslymundane routines for managing continence take on newimportance.

We have published a detailed literature review sur-rounding MS and incontinence elsewhere so the literaturewe will be summarized only here.1,4 A CDROM searchwas performed and 16 articles that dealt specifically with MS and incontinence were found. Diagnosis and continence assessment tools were discussed by severalauthors.9–11 Much of the literature focused on the clinicalevaluation of the incontinent individual. This literatureoffered predominantly surgical, pharmacological and non-invasive therapeutic interventions was bio-medicallydriven and dealt with surgical interventions.12,13

Non-invasive therapies (conservative management routines) included biofeedback, bladder training, andhabit training, pelvic muscle exercises, prompted voidingand dietary interventions.14 In this literature, non-surgicalinterventions included intermittent catheterization.15–19

Pelvic floor exercises20 and dietary intake21 were the pre-ferred treatment modalities for nurse clinicians. Severalstudies suggested that continence aids were an importantresource in long-term management of incontinence andfocused upon the intermittent nature of incontinence and concluded that this makes management an addedburden.12,21–23 Despite this recognition, there was scantknowledge in this literature to assist clients and nurses inthe management of incontinence for people living withMS.

Miller and Neuhauser24 presented a case study of awoman with MS and described an interdisciplinary nego-tiated approach to management of incontinence thatincluded the client and family members. The philosophyof a client-centred approach to continence managementwas also suggested by several authors.20,25,26 The intermit-tent nature of urinary incontinence in clients with MS wasrecognized as a client–nurse management problem, andclients, as noted by Lloyd,25,26 often devise ways of man-aging incontinence that suit their social and psychologicalneeds. The literature suggests that client involvement iscrucial to the success of any therapeutic interventions.Most importantly, being incontinent can be a significantproblem for people with MS, but it is only part of thestory. We attempt to contextualize what it is like livingwith MS and incontinence.

PARTICIPATORY ACTION RESEARCHParticipatory Action Research is a method of qualitativeinquiry that is driven by the participants as they set theagenda. It is an approach that embraces principles of participation, reflection, empowerment and emancipa-tion.While being a collaborative process, it promotes self-knowledge among the participants. Bringing CNAs andthe participants together provides the participants withinformation to systematically investigate their incon-tinence problems and, as we have discovered in pre-vious studies,1–4 provides an opportunity to explore otherissues. Creating an environment where participants feelsafe to talk is essential.

The PAR approach described by Stringer27 was seen asthe most useful for this project because it favours con-sensual and participatory procedures that enable the par-ticipants to set their own agenda and to prioritize issuesthey wished to discuss. Guided by Stringer’s process ofPAR, participants are encouraged to systematically inves-tigate their problems and issues, to formulate experientialaccounts of their situations, and to devise plans to dealwith the problems at hand.

The literature which explores the PAR process andgroup dynamics is prolific; however, we noted that muchof the literature ignored the construction of meaning inthe process of the discussion within a PAR group. Personalmeanings of living with urinary incontinence emerged asa continuous process of negotiation. Meanings were notfixed, but emerged during the conversations as womenwere making sense of their own experiences. Togetherwith participants, we created meanings through con-versation in which we compare and contrast our variousinterpretations.

THE PAR PROCESSThe PAR group included four women who had volun-teered to be involved in the research and three membersof the research team. The women came to the group after reading an invitation to participate in the researchwhich was placed in the Multiple Sclerosis Society (South Australia) Newsletter, and the CNAs extended a per-sonal invitation to past clients. An Ethics Committeeapproved the study and the names used in this paper arepseudonyms.

The group met for 2 h each meeting for five meetingsbetween March and June 1999. Refreshments were pro-vided. The meetings were held at a central location withfacilities for disabled people.

Women with MS and urinary incontinence 19

The researcher initiated the first discussion with a focus on urinary incontinence. At the first meeting, thewomen were encouraged to talk about themselves as theresearcher incorporated the following questions into the conversation: Can you tell us about yourself from thetime you first experienced urinary incontinence to thepresent time? What sort of changes did you make to yourlife since this development? What do you think assistedyou to develop strategies to manage your incontinence?What is important for you now and for the future? Oncediscussion was initiated, the women set their own agendafor further discussions.

ANALYSIS OF DATAThe researcher and CNAs took notes throughout themeetings and wrote significant statements verbatim. Themeetings were also tape-recorded.The researchers’ hand-written notes (that included both the meeting proceed-ings and their reflections), and notes taken by the CNAsin addition to the tape recorded transcripts, were all typedand analyzed using a descriptive–exploratory method thatinvolved highlighting and extracting recurring issues.These issues were then discussed with members of theresearch team at the following meeting. Following eachsession, the CNAs and the researcher met to discuss theevents of the group.

THEMESIt is beyond the scope of this paper to compare the themeswith those from earlier groups, although there are similarities.

Learning to live with MS had made an impact on everyaspect of the participants’ lives. Carol said, ‘MS changesyou, there are so many things that are different for us’.Living with the consequences of incontinence and learn-ing to contain their urine was a consuming part of their lives. It was made more difficult because inconti-nence was not an issue that the women felt comfortabletalking about. Two women in the group had never metanyone else with MS. By the conclusion of the group, eachwoman had been empowered through the PAR process to seek private consultation with the CNAs with the aim of gaining more knowledge and control over herincontinence.

The women described a range of experiences of livingwith incontinence, but their stories were also intercon-nected with the experiences of being a woman and livingwith the consequences of MS.The women had lived with

MS and urinary incontinence for different periods of time.Carol was the oldest member of the group (68 years); shehad lived with MS for 35 years. Until she joined the group,she had never met another person with MS. The group validated her experiences and she was eager to listen tothe stories of the other women. Mary had lived with MSfor more than 20 years but urinary incontinence had onlybecome a problem in the last few years. Mary was alsobreaking the silence with regard to incontinence, althoughshe had recently sought help from a CNA. Jan and Annewere younger women. Jan recalled living with urinaryurgency and frequency long before MS was diagnosed.Anne’s experience with incontinence presented duringpregnancy, so she was not sure if her incontinence was aconsequence of MS or childbirth; however, it had wors-ened over the last few years. Each woman used a wheel-chair although they could all weight-bear and walk shortdistances with assistance.

The themes, which emerged from the transcripts,were:

• Being in control: ‘a security pad’.

• Seeking understanding: ‘having to explain’.

• Avoiding shame: ‘my unreliable body’.

• Having good and bad days: ‘it is a fraudulent disease’.

Being in control: ‘A security pad’The women came to the group having already identifiedincontinence as a problem in their lives. Containmentissues were seen to be resolved through wearing a dis-posable pad to contain the urine. More importantly, it wasa solution they could provide for themselves withoutmedical intervention because disposable pads were acces-sible and freely available through supermarkets. Wearinga pad provided the opportunity to privately manage whatthe women perceived was a private problem. Womenseemed to feel comfortable in wearing a pad because itwas not much different to wearing a sanitary pad, whichthey used to control the flow of menstrual fluid. Pads wereviewed by the women as a strategy for maintaining controlof their incontinence and to provide a sense of security. Itmeant bodily fluids could be contained and the problemwith incontinence kept discreetly from the view of others.Carol shared how her incontinence ‘just happens’ and thatwearing a pad helps her to feel more secure.

I wear a pad during the day and night-time, and rather than have

the problem, I wear the pad. I hate it; it makes me feel old . . . we

seem to revert back to being a child as we get older.

20 T. Koch et al.

Anna told how she wears a pad for ‘just in case’ but itis nearly always dry. Mary said, ‘I think it is like a securitypad’. This sense of security was very important to thewomen. Carol said, ‘I wouldn’t dream of going outwithout a pad’. Jan said that she always wears a pad ‘so Idon’t disgrace myself’.The women perceived it would notbe acceptable to others if they were incontinent in public.The women who had been incontinent in public recalledthe embarrassment and humiliation of the experience.There was a perception that the adult body should be wellcontained. Carol shared that being incontinent felt child-like; however, people generally tolerated a child beingincontinent but were less accepting of adults who couldnot contain their body fluids.

During the course of the PAR group discussions, CNAsdemonstrated the large range of pads available and thisgave the women an opportunity to take home and testpads for their individual needs. Following this testing, theywere better able to decide on aspects such as physicalcomfort, ability to keep skin dry, ability to prevent wetspots and odour control.Thus, practical outcomes for thewomen were enhanced with feelings of security and con-fidence in wearing the ‘right’ pad.

Seeking understanding:‘Having to explain’

The women voiced strongly how always ‘having toexplain’ to people about various aspects of their life withMS caused a continual focus on the illness and the limita-tions the illness had placed upon their lives. The womensought understanding from those around them, but it wasnot always forth coming. Mary said, ‘I’ve never discussedwhat is wrong with me [to my husband]. I do find whenwe have been out that [my husband] rushes to the toiletfirst’. Mary grimaced as she recalled this and speculatedthat his understanding might improve if he were to beinflicted with a debilitating illness. She continued, ‘I wishmy husband would get some little thing that would handi-cap him a little bit’.

The women were aware of how their illness and incon-tinence affected the lives of others around them.Anna toldhow when she went out socially, she has to ‘catch the eye’of her husband so he can assist her to the toilet. Sheexplained that her husband was very supportive and neverhurried her. In continuing the conversation she divulgedher fears when she asked the other women,‘Does the rela-tionship change as the illness goes on?’

The women had experienced their partners’ frustrationtowards their disease. Carol shared, ‘In company, myhusband was very attentive but in private he could notunderstand why I could not do [something]’. An exampleof the conflict in their private life was revealed when Caroltold of a motoring holiday she went on with her husbandand he would not stop the car so she could go to the toilet.He disregarded her request because he was in a hurry toarrive at their destination. Carol recalled the embarrass-ment and humiliation she felt because she was incontinentin the car seat. It was from that time on that she wore adisposable pad. Mary, who has had many falls at home, toldhow her husband would toss her walking frame aside whenit gets in his way. It is then too far away for her to reach.

Mary, in her desire to have more freedom, bettermobility and independence sought information aboutusing an electric wheelchair or gopher. However, herhusband was worried that ‘his’ house may be damaged andso Mary felt she was unable to use such aids within ‘hishome’.

The women felt socially restricted because of the con-stant need to explain to others why they needed to visitthe toilet frequently. This was particularly true in small,intimate gatherings or in situations where toilets were noteasily accessible and they needed help. Jan shared how shehad been invited to a barbecue in a park. She had declinedthe invitation and explained to the host that she needed tobe close to a toilet.The host assured her that it would notbe a problem. Jan went to the barbecue, but felt self-conscious about frequently needing to ask people for helpto get to the toilet. Jane explained:

I feel I am coping with incontinence. Although there are problems

like when I know I am going out somewhere and will be out all day

and have to change a pad.Where am I going to put it? I make sure

I don’t disgrace myself. I’ll put a soiled pad in my bag and just hope

no one notices.You have to accept that it’s what you have to do some-

times.You feel a bit of an idiot having to ask to go to the toilet all

the time.

Anna felt it was ‘important for other people to under-stand’, but she also said that she did not ‘like to explainthings because I may seem like a “grizzle pot”’. Maryagreed that she would like some understanding:

My husband knows . . . I’ve had this long enough.He says ‘why have

you flushed the toilet again,don’t you know we have to pay the excess

water bill?’ He knows I have MS [but] we have never discussed it.

Women with MS and urinary incontinence 21

The women felt others perceived there was a fine linebetween explaining and complaining. There was muchemotion intertwined with living with MS and inconti-nence which was often displayed on the faces and in thevoices of the women as they described experiences whichdistressed them. It was difficult to have to explain aspectsof their lives to others when experiences were still raw.Explaining their experiences and challenges to others wasalso a continual reminder to the women that they weredifferent. Carol said, ‘[I] just want to be treated as anormal person, but [I] do have problems’.The women didnot want others to perceive them as different as they triedto make living with the symptoms of MS a part of theirordinary day.

Avoiding shame: ‘My unreliable body’Urinary incontinence bought unpredictability to the livesof the women.The everyday management of incontinencetook a heightened importance in their lives. Carol said,‘Incontinence makes you feel ashamed because you are agrown up adult. It makes you more reserved’. Being anadult means having a well-managed, continent body. Herbody now seemed unreliable as sometimes she did not feelthe urge to pass urine, and other times she felt greaturgency and then was unable to pass urine once she sat onthe toilet. Mary said,‘I got up out of the kitchen chair andI felt water leak out of me.That is when I started wearinga pad’. In addition, the symptoms of MS could be so tran-sient. Her body had become untrustworthy.

The need to contain her urine became a significantfocus of her day. She needed to compensate for the unre-liability of her body by consciously planning ahead. Jansaid:

When you go out . . . I mentally organize myself. I am reluctant to

accept an invitation if it is going to be difficult that way. I make a

list of how I am going to get to the toilet.

Anna agreed, saying, ‘I work out if I can get there bymyself’. The women were constantly monitoring theirbodies so they could maintain a level of independence with daily activities and not feel the disgrace of beingincontinent.

Having good and bad days:‘It is a fraudulent disease’

The women agreed that the nature of living with MSmeant that some days were better than others. Carol often

referred to MS as ‘a fraudulent disease’, because symp-toms could be so transient. Carol said:

As soon as I wake up I know if it is going to be a good day or a bad

day. [My body] doesn’t always work on those bad days.A bad day is

when things that you normally can do such as shower yourself, you

think you will do it in a few minutes, and then you find an hour

has gone.Then you get your cup of tea and slop it and then you

clean it up, then you slop it again.The little things like that mean

so much to us . . . There are good and bad days with incontinence.

Energy levels can drastically change from day to day,and the women felt this made it even more difficult forothers to understand what it is like to live with MS.Anna explained, ‘Some days I find I can do things that Icouldn’t do the day before. People must think I am makingit up’. It was important for the women to feel that MSwas a valid disease. They perceived other people mightquestion their illness because when looking at them, therewas no visible evidence. Mary shared, ‘I get embarrassedabout having MS.You have nothing to prove there is some-thing wrong with you’. Mary shared a story about awoman who cursed her for being drunk when her gait wasunsteady from the symptoms of MS. Carol showed a cardshe carried which says she is not drunk but has MS.The invisibility of MS was a concern for the women andthey perceived this added to the inability of others tounderstand the daily challenges the women faced.

DISCUSSIONThe four women with MS who participated in this groupshared their experiences of living with MS and inconti-nence.Women shared that it was very important to theirself esteem for them to contain their urine because theyperceived that others viewed adult incontinence as unac-ceptable. The women felt incontinence was an intenselyprivate issue in their lives and had been reluctant todivulge their experiences or seek assistance prior to theirinvolvement in the PAR group.This may be clinical prac-tice issue for health professionals to consider. If clients aresilent about incontinence it may not necessarily mean theyare not experiencing it. The health professional may sen-sitively need to break the silence with the client.

The women came to the group having already madesome choices for controlling the threat of spilling urine bythe wearing of pads and planning ahead if they were goingout. Through this control and planning the women wereable to be seen by the outside world as continent and

22 T. Koch et al.

clean. The women lived in fear of disgracing themselvesby being incontinent of urine within the view of others.

Three of the women had experienced living with maleswho dominated decision making, and they became awareof how their illness impacted on those around them.Theydesired a degree of understanding of their daily chal-lenges, and this was not always forth coming. It wasimportant to the women for MS to be viewed by othersas a valid illness.

SUMMARYFor the women who participated in this study, the impor-tance of containing and regulating the passing of urine andthe impact that incontinence had upon their lives was sum-marized by Anna when she said,‘Incontinence has changedmy life more so than not being able to walk. I always haveto rely on [my husband].’The inability to be reliably con-tinent was one of the worst symptoms of living with MS.It meant having a personal secret, not being able to trusther body, having to plan ahead and at times becomingsocially isolated and reserved. For some women inconti-nence seemed a childlike state because they did not feelin control of their bodies.This paper is about breaking thesilence, as Anne shared, ‘Incontinence was not an issue Ihad ever talked about. I’ve learned a lot and I feelrelieved.’

ACKNOWLEDGEMENTSWe wish to acknowledge and thank the women who participated in this group, and the assistance of a HealthEnhancement Research Grant from the South AustralianHealth Commission.

REFERENCES1 Koch T, Kelly S. Understanding what is important for

women who live with MS. Australian Journal of Holistic

Nursing 1999; 6: 14–24.2 Koch T, Kralik D, Taylor J. Women living with type 2 dia-

betes: The intrusiveness of the disease. Journal of Clinical

Nursing 2000; 9: 247–254.3 Koch T, Kralik D, Sonack D. Men living with type 2 dia-

betes: Minimizing the intrusiveness of the illness. Journal of

Clinical Nursing 2000; 8: 712–722.4 Koch T, Kralik D, Kelly S.‘We just don’t talk about it’: Men

living with MS and urinary incontinence. International

Journal of Nursing Practice 2000; 5: 253–261.5 Gary M, Doughtery M, Green B. Urinary incontinence:

Pathophysiology and treatment. Journal of Enterostomal

Therapy 1987; 14: 152–162.

6 Wyman J, Harkins S, Fantl J. Psychosocial impact of urinaryincontinence in the community-dwelling population.Journal of the American Geriatric Society 1990; 38: 282–288.

7 Newman D. The treatment of urinary incontinence inadults. Nurse Practitioner 1989; 14(6): 21–32.

8 Goldstein M, Hawthorne M, Engeberg S, McDowell J,Burgio K. Urinary incontinence: Why people do not seekhelp. Journal of Gerontological Nursing 1992; 18: 15–20.

9 Cantanzaro M, O’Shaughnessy E, Clowers D, Brooks G.Urinary bladder dysfunction as a remedial disability in MS:Sociological perspective. Archives of Physical Medicine and

Rehabilitation 1982; 63: 472–474.10 Qualey T. An approach to elderly incontinence. Nursing

Management 1995; April; 26: 48q–t.11 Woodward S. Assessment of urinary incontinence in neu-

roscience patients. British Journal of Nursing 1995; 4:254–258.

12 Anderson R. Current research and investigational proce-dures in neurogenic bladder. Neurogenic Bladder 1993; 4:363–376.

13 Chancellor M, Blaivas J. Diagnositic evaluation of inconti-nence in patients with neurological disorders. Comprehensive

Therapy 1991; 17: 37–43.14 Fonda D,Woodward M, D’Astoli M, Chin W.The continued

success of conserative management for established urinaryincontinence in older people. Australian Journal on Ageing

1995; 13: 12–16.15 Maynard FM. Long term management of neurogenic

bladder: Intermittent catheterization. Neurogenic Bladder

1993; 4: 299–310.16 Langford R. Keeping control. Nursing Times 1994; 90(27):

58, 60.17 Sibley L. Confidence with incontinence. Nursing Times 1988;

84(46): 42–43.18 Stover SL. Epidemiology of neurogenic bladder. Neurogenic

Bladder 1993; 4: 211–220.19 Stover SL. Management of bacteriuria and infection in neu-

rogenic bladder. Neurogenic Bladder 1993; 4: 343–362.20 Henderson JS. A pubococcygeal exercise program for

simple urinary stress incontinence: Applicability to thefemale client with MS. Journal of Neuroscience Nursing 1988;20: 185–188.

21 Chalmers C. A psychological approach. Nursing Times 1993;89(47): 68, 71, 73–74.

22 Kinn AC, Larsson PO. Desmopressin: A new principle forsymptomatic treatment of urgency and incontinence inpatients with MS. Scandinavian Journal of Urology and

Nephrology 1990; 24: 109–112.23 Brown J,Thomas E,White H, McCallum A.An incontinence

helpline service. Nursing Standard 1991; 5(38): 25–27.24 Miller DM, Neuhauser D. Continuous quality improvement

and the care of persons with MS: Two case studies. Journal

of Neurological Rehabilitation 1995; 9: 7–13.

Women with MS and urinary incontinence 23

27 Stringer ET. Action research a handbook for practitioners.Thousand Oaks, CA: Sage Publications, 1996.

25 Lloyd KL. Long term management of neurogenic bladder:An eclectic approach. Neurogenic Bladder 1993; 4: 329–342.

26 Lloyd KL. Long term follow up of neurogenic bladder. Neu-

rogenic Bladder 1993; 4: 391–409.