Self-management strategies used by men and women who live with Multiple Sclerosis and urinary incontinence
Sue Eastwood (RN, RPN, BNg, MRCNA) - Continence Nurse Advisor, Royal District Nursing Service (SA Inc), 31 Flemington Street, Glenside, South Australia 5065
Debbie Kralik (RN, MN, PhD, MRCNA) - Research Associate, Royal District Nursing Service (SA Inc), 31 Flemington Street, Glenside, South Australia 5065
Professor Tina Koch (RN, Ph.D.) - RDNS Chair in Domiciliary Nursing, Flinders University of South Australia, GPO Box 2100, Adelaide, South Australia
Multiple Sclerosis is a chronic illness that impacts on every aspect of an individual’s life. The demands of the illness are both dynamic and multi-dimensional as the illness extends beyond the physical manifestations to affect emotional equilibrium as well as social roles and relationships. Urinary incontinence presents issues that many people living with Multiple Sclerosis have learned to self manage. This study aimed to expose the experiences of men and women living with Multiple Sclerosis (MS) and how they managed the challenge of urinary incontinence in their lives.
In this paper we report the secondary analysis of findings from research conducted during 1999 where a Research Associate (RA) and four Continence Nurse Advisors (CNAs) formed two Participatory Action Research (PAR) groups with men and women who lived with multiple sclerosis and urinary incontinence. We conducted separate gender PAR groups with men and women and primary data were analysed concurrently within each group. It was not until we performed a secondary analysis of these combined data that we uncovered differences in self-management of urinary incontinence. Although we found that both men and women sought to privately ‘self manage’ their bodily continence, the fear of being incontinent in public had led to social isolation. Differences in self-management were overwhelmingly influenced by the social stigma associated with elimination of body waste as ‘dirty’. Women sought to ‘contain’ urine by using pads whereas men made ‘compromises’ in their daily lives by implementing more complex strategies to manage incontinence. In this paper we enlarge on the gender differences in self-management strategies, however, we argue that each person’s symptoms should be addressed on an individual basis and placed within the context of their lives. The participants, Continence Nurse Advisors and Researchers gained mutual benefit from this inquiry through the exchange of knowledge and understandings.
Multiple Sclerosis is an unpredictable illness that may impact on every aspect of an individual’s life. The demands of the illness are both dynamic and multi-dimensional as the illness extends beyond the physical manifestations to affect emotional equilibrium as well as social roles and relationships. Urinary incontinence is an issue that many people living with Multiple Sclerosis experience (MS). Urinary dysfunctions are common in MS and symptoms can vary from person to person. For these reasons, people develop private strategies to self manage incontinence. This study exposes the experiences of men and women living with MS and how they managed the challenge of urinary incontinence. In this paper we report the secondary analysis of findings from research conducted during 1999 where two Participatory Action Research (PAR) groups were formed with four men and four women, a Research Associate and four Continence Nurse Advisors (CNAs). We explore the commonalities and diversities between men and women living with MS and urinary incontinence and conclude the paper by making recommendations for nursing practice.
The first author is a Continence Nurse Advisor, the second author is a Research Associate and the third author is the Principle Researcher. The second and third authors facilitated the PAR groups. The organisation's Ethics Committee approved the research, and pseudonyms have been used to maintain participant anonymity.
This research built upon a pilot study that was conducted in 1997 by the Royal District Nursing Service of South Australia. The pilot project involved bringing together eight women with MS and four Continence Nurse Advisors in a PAR group that explored the experiences of women with MS and how they self-managed urinary incontinence (UI). The women experienced a sense of validation as they shared stories of how they managed UI in their lives. It became clear that the social context in which the women lived meant that they had each constructed silent and private meanings of incontinence. Through participation in the group the women were able to reconstruct their understandings of effective management. Women who participated in the pilot study were empowered through the PAR process and embraced the advice gained from each other and the CNAs to enhance their management of incontinence. The sharing of information was a positive experience for each of the women, and the inquiry provided evidence on which to base incontinence care in our community nursing practice (Koch and Kelly 1999). Building on this pilot study we conducted two further PAR groups with men and women and sought to explore self manage UI within the context of their lives.
Multiple Sclerosis (MS) is a disease that involves a disseminated demyelination of the nerve fibres of the brain and spinal cord. The diversity of symptoms that individuals may experience is caused by an auto-immune attack on the insulating myelin of different nerves in the central nervous system. MS plaques in the brain and spinal cord may interrupt the transmission of signals to and from the brain. This in turn can result in problems storing urine to normal capacity, emptying the bladder completely or urine or faeces may be released involuntarily. To be continent, it is necessary to have both the neurological controls of the detrusor muscle and a competent urethral sphincter mechanism (Day 2000). People with MS may experience urge incontinence accompanying a neurogenic bladder and may have also lost sensory enervation of the bladder as well as coordination of the detrusor and pelvic floor muscles (Gray, Dougherty and Green 1987). Urinary incontinence can also occur if the detrusor and pelvic floor muscles contract at irregular times.
The social implications and stigma attached to incontinence is often the reason that people seek help (Day 2000). A high standard of personal hygiene is an expectation in our society and adults are expected to have control over elimination (Catanzaro, O’Shaughnessy, Clowers and Brooks 1982). For people living with MS, the mundane routines for managing continence take on a greater importance as incontinence intrudes into their lives.
A CDROM literature search revealed sixteen articles dealing specifically with MS and incontinence. Non invasive therapies (conservative management routines) included biofeedback, bladder training, habit training, pelvic muscle exercises, prompted voiding and dietary interventions (Fonda, Woodward, D’Astoli and Chin 1995). In this literature non-surgical interventions included intermittent catheterisation (Maynard 1993; Langford 1994; Sibley 1988). Pelvic floor exercises (Henderson 1988) and dietary intake (Chalmers 1993) were the preferred treatment options for nurses. Continence aids such as intermittent self catheterisation were identified as an important resource in long term management of incontinence (Langford 1994; Chalmers 1993). Despite the extensive literature that focused on incontinence, knowledge to assist clients and nurses in the promotion of self management of incontinence for people living with MS was scarce.
Miller and Neuhauser (1995) described an interdisciplinary negotiated approach to management of incontinence that included the client and family members. Several authors (Henderson 1988; Lloyd 1993 a& b) advocated the philosophy of a client centred approach to continence management. The intermittent nature of urinary incontinence in clients with Multiple Sclerosis was recognised as both a client and nurse management problem, and clients, as noted by Lloyd (1993 a& b), often devise their own ways of managing incontinence that suit their social and psychological needs.
Incontinence diagnosis and assessment tools were the focus of discussion by several authors (Woodward 1995; Anderson 1993; Chancellor and Blaivas 1991). A large part of the literature focused on the clinical evaluation of the incontinent individual. This literature offered predominantly surgical, pharmacological and non-invasive therapeutic interventions, was bio-medically driven and dealt with surgical interventions (Kinn and Larsson 1990; Newman 1989; Brown, Thomas, White and McCullum 1991; Wyman, Harkins and Fantl 1991). Although it has been acknowledged that incontinence has different meanings for different people (Wong 1995) we found that there exists an assumption that men and women experience incontinence in similar ways because gendered experiences when living with MS and urinary incontinence have not previously been reported. The oversight motivated us to explore whether there were different issues between the lives of men and women. CNAs from our community nursing organisation advocated further research in the area of continence management for men and women with MS was necessary to inform their nursing practice.
PARTICIPATORY ACTION RESEARCH GROUPS
Participatory Action Research (PAR) is an approach that embraces principles of participation, reflection, empowerment and emancipation. The process allows participants to share their stories in a supportive environment, to gain new understandings through these conversations, and a means to systematically investigate their problems and issues. PAR is about identifying and investigating problems but it is also about facilitating people towards taking action. In this case, bringing CNAs and the participants together provided information and understandings that facilitated participants towards systematic investigation of their issues with incontinence problems.
The PAR principles described by Stringer (1996) were applied in this study because it favours consensual and participatory procedures that enable the participants to set their own agenda and to prioritise issues they wished to discuss. Guided by Stringer’s process of PAR, participants were encouraged to systematically investigate their problems and issues, formulate experiential accounts of their situations, and to devise plans to deal with the problems at hand. Self -knowledge was promoted among the participants by collaboration and sharing stories about incontinence with other group members hence, it was essential that researchers created an environment where participants felt safe to talk. From a researcher’s perspective, a PAR approach facilitated a holistic understanding of how individuals live with MS and incontinence in their every day lives.
Our experiences with PAR have revealed that the construction of meaning occurs during the process of the group discussion. If participants had not previously been provided the opportunity to openly discuss their experiences then their personal meanings of living with urinary incontinence emerged as a continuous process of negotiation within the group. In this way meanings were not fixed, but emerged during the conversations as men and women set about making sense of their experiences.
The recording of data was conducted in several ways. The researcher and CNAs took notes throughout the meetings and significant statements were written verbatim. The researchers’ hand written notes included both the proceedings and reflections on the group proceedings. Interviews were tape-recorded with the participants' consent and transcribed the same day.
Analysis of the primary data was both concurrent and systematic. Following each session, the CNAs and the researcher met to discuss the events of the group. In keeping with the principles of PAR, data generated from each meeting was discussed between researchers and issues requiring further discussion within the group were identified. This process also enabled the identification of varying perceptions among the research team. Hence, the researchers hand-written notes that included both the meeting proceedings and her reflections, notes taken by the CNAs, in addition to the tape recorded transcripts, were all typed and analysed using a descriptive-exploratory method that involved highlighting and extracting recurring issues. The diversity and commonalities within these issues were included and discussed with members of the research team at the following meeting.
The primary analysis identified four themes from each group (Table 1). A detailed explanation of the findings from each group has been reported elsewhere (Koch, Kralik and Kelly 2000; Koch, Kralik, Eastwood and Schofield 2001) however, we will reflect on the meaning attached to each theme in the discussion of our secondary analysis.
|MENS PAR GROUP||WOMENS PAR GROUP|
|Motivated to make changes||Being in control: 'a security pad'|
|Planning your life around toilets||Seeking understanding|
|Managing myself||Avoiding shame: 'my unreliable body'|
|Today will not be the same as tomorrow||Having good and bad days|
The themes identified from the men and women's PAR groups shared common threads that influenced the way in which they met restrictions that challenged their lifestyle. There was a focus on the challenges of living with MS in addition to managing urinary incontinence. The desire to be seen and accepted as a ‘normal’ person, the fear and uncertainty of losing control of bladder or bowel, and the motivation for making changes to maintain dignity was clearly evident in the themes.
The PAR groups generated broad and rich data about participants’ experiences of living MS and managing urinary incontinence. We applied the principles of secondary analysis to revisit the transcripts and explore the commonalities and diversities in the participants gendered experiences in their self-management of incontinence. In returning to our original transcripts we were guided by Nicoll and Beyea (1999) and Szabo and Strang (1997) and their experiences of secondary analysis. Secondary analysis involves the re-analysis of data that were gathered from previous research. We were the primary researchers and contend that closeness to the original data sets and an understanding of the context in which the data was generated is important when performing secondary analysis. In this case, we re-analysed the data sets that were gathered from the two PAR groups to ask a new question: 'What are the gender differences in the ways that men and woman self-manage urinary incontinence?
To answer this question, the researchers identified ‘critical statements’ in the transcripts that highlighted the participants’ experiences of self-management of incontinence. The researchers then recalled, discussed, described and recorded the context in which the statements were made. The ‘critical statements’ were then compared between the gendered groups and the two themes of compromising and containing became evident.
Local community MS groups were approached to advertise for potential volunteers. The CNAs also invited past and current clients to participate. Letters were sent to the prospective participants inviting them to participate in the PAR Groups. These letters included information about PAR Groups and the processes, which also included the recording of data, confidentiality, anonymity and the ethical considerations that would be strictly adhered to.
To participate in the inquiry, clients needed to have been diagnosed as having MS, live with incontinence (but be without a permanent indwelling urinary catheter), and live in the Adelaide metropolitan area. Four participants were recruited to each of the men and women's PAR groups.
Participants in the men’s group were Denis, Steve, James and Thomas and were aged between 48 and 62 years. The men had varying degrees of incontinence and disability. Steve used a wheel chair but was able to weight bear. Denis and Steve had previously sought advice from CNA's about how to manage their incontinence and as a consequence Steve practiced intermittent self-catheterisation. James and Thomas knew each other from a MS Support group but had never discussed incontinence as this was a mixed social group where these things were not mentioned.
The participants in the women’s group were Carol, Mary, Jan and Anne and were aged from 43-68 years. Each woman used a wheelchair although they could all weight bear and walk short distances with some assistance. Carol, Mary and Anne had never had the opportunity of speaking with anyone with MS prior to participating in the PAR group and incontinence was not a subject previously spoken about. Jan socially interacted with other people with MS, but had never broached the very personal subject of incontinence.
Meetings were held in a central location with facilities for people with disabilities, and refreshments were provided. Each PAR group met five times with each meeting lasting 2 hours. Meetings were held fortnightly.
To begin discussion in the groups at the first meeting for each PAR group, the men and women were encouraged to talk about themselves as the researcher posed questions which included; ‘can you tell us about yourself from the time you first experienced urinary incontinence, to the present time?’, ‘what sort of changes has urinary incontinence made to your life?’ and ‘what do you think assisted you to develop strategies to manage your incontinence?’ Once discussions were initiated, the men and women themselves set the agendas for further discussion in their own respective PAR groups.
THE SOCIALISATION OF CONTINENCE
Toilet training can introduce children to the concept of shame at a young age (Lawler 1991). Educating a child to conform to social rules about the timing and placement of bodily wastes is a process that encourages the child to adopt the attitudes and values of parents and the wider society (Turner 1987). Generally, children are rewarded when they conform by urinating or defecating in the toilet and punished when they do not (Seymour 1998). We are educated from infancy to regulate and contain our body fluids in a private manner or suffer shame or punishment as a possible consequence if this is not achieved.
The World Health Organisation has estimated that there are 200 million worldwide with symptoms of male or female urinary incontinence, however a true number is not known because the problem is under-reported (Goldstein et al 1992). Male and female urinary incontinence or incontinency has been associated with shame, embarrassment, and silence (Seymour 1998; Day 2000). Men and women in the PAR groups described their experiences of living with an 'unreliable body’, which made them vulnerable to the potential embarrassment of being publicly incontinent. Public humiliation and embarrassment constitute a strong negative reinforcement and is likely to encourage a person to behave themselves according to the appropriate social norms. Adults in our society are expected to have control of their body and to understand the need to protect others from the ‘sights, sounds and smells that may emanate from the body’ (Seymour 1998:158). There exists social reinforcement to keep private the ‘private parts’ of the body and the excretion of bodily fluids is a distinctly private activity. The adult individual must be responsible for monitoring, disciplining and controlling their body (Seymour 1998) and body waste, therefore public incontinence brings with it notions of childlike irresponsibility.
Urinary incontinence was found to be more than an inconvenience but
it was intrusive to a full life. In an attempt to control the intrusiveness,
men in particular described how they actively sought to make compromises
in their daily lives. Men and women spoke of the need to ensure that they
knew the location of toilets when they went out, however the men felt this
strategy impacted on their lives significantly because they were not accepting
of other measures of containment. The location of toilets was a foremost
consideration before the men left home to go into the community.
Alternatively, they sought and found a toilet as soon as they arrived.
They shared how they carefully planned outings or avoided outings if there
was uncertainty as to the availability and location of toilets. James explained
that he would wait at home to go to the toilet before he ventured outside
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 intrusive restrictions on his lifestyle. He described feelings of overwhelming anxiety when he was in crowded places and feared he may not get to the toilet in time. These fears and anxieties meant James made compromises in his life and no longer attended football matches or large shopping centres because toilets were too far away and there was often a line of people waiting to use them.
Containing urine by the use of incontinence pads had not been acceptable to the men, hence they talked about the alternative strategies they had worked out for themselves. These strategies included keeping a cordial bottle in the glove-box of the car to use as a urinal, using ‘mind games’ to distract themselves from the urge to urinate, and not going out unless they had urinated the approximate equivalent of their oral fluid intake. Both the men and women spoke of severely restricting oral fluids (even if this was not advisable due to heat or other consequences) in order to predict the urge to urinate when in public.
Thomas told how it had become part of his daily routine to avoid drinking for two hours before leaving home for work so he would not need to urinate during the drive there. He described the devastation and humiliation he had felt when he had mistakenly thought he could 'hold on' and had wet himself. 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 that he would regulate or restrict his oral fluid intake so he would feel more confident about getting through his day without the very real threat of incontinence. James shared how he would wake each morning with extreme thirst and consume several glasses of water, then stay home until he had urinated what he deemed to be sufficient amounts.
Incontinence was initially a very significant problem for Denis because
he had previously consumed large amounts of coffee. He had reduced his
caffeine intake and had found this compromise had dramatically decreased
his urinary urgency and frequency and promoted a sense of control over
the threat of incontinence. Denise shared this experience in the
group, and in this way facilitated James to also feel in control of his
incontinence. James said; 'I enjoy life too much to remain at home in fear',
so following discussion with the other men, James chose the following action
plan. James decided that he would also experiment with reducing his caffeine
intake. Denis had told him that 'caffeine is a killer'. James purchased
a particular caffeine reduced tea that was recommended by other group members
as tasting similar to 'normal' tea. He was delighted with the effect of
a reduced caffeine intake because his sense of urgency was significantly
reduced that same day. James said:
… 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.
Each of the men found alcohol had increased urinary urgency and frequency
and felt compromises had been made to their social lives by ceasing to
drink alcohol. With humour Denis said:
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' because he chose to hide from people the truth about his frequent visits to the toilet. Few people knew he had MS, so he would 'splash water' onto the front of his trousers or carried his jacket in front of him to cover ‘drip’ marks.
The men agreed that each day is different with regard to managing urinary incontinence. 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 unreliability in their lives as they found it difficult to plan. James found that since he had left paid employment, life was a little easier, however he made compromises each day by planning and organising his activities around his urinary urgency and frequency.
Steve practiced clean intermittent self catheterisation and shared how he never knows what the day will be like in regard to his urinary incontinence, so he carries a urinary catheter in his pocket 'just in case'. Steve used a urodome at night to avoid a wet bed and shared how he had configured a way to apply the urodome so that it would not dislodge during the night. Steve would always catheterise himself before going out or if he planned to be out for a length of time, he would leave the catheter in and attach a leg bag to avoid the ‘shame’ of being incontinent. He found catheterisation had enabled him to gain control over his incontinence, and for this reason it was liberating for him.
The men perceived that living with MS and urinary incontinence meant they no longer had complete control of their body, however they strongly agreed that they did have dignity, although incontinence had pushed their sense of dignity to the extreme limit. Maintaining their dignity and avoiding the embarrassment of being publicly incontinent meant making compromises in their lives such as avoiding social outings, regulating oral fluid intake, planning their lives around toilets, reducing caffeine and alcohol intake, and making excuses to others about their frequent visits to the toilet.
The women all used wheelchairs. Each of the four women who attended the group relied on pads to contain their urine. Absorbent pads provided security, and security was essential for them to live a full life. Mary shared: ‘I think it is like a security pad.’ While the wearing of pads made a positive contribution to daily living, the women considered them to be the most effective and most private solution to managing urinary incontinence although they agreed that the ideal would be to eliminate leaking or loss of control so that pads were not needed. Only Anne viewed this as a possibility.
The containment of urine was an important focus of the women’s day. The accessibility and general acceptability of the use of pads enabled these women to take control of their urinary incontinence in private without formal assessment or assistance from health professionals. The women felt comfortable purchasing pads because they could easily and discreetly be obtained from the supermarket or chemist. Pads were also acceptable to women because they were accustomed to using pads to contain menstrual flow. In addition, incontinence pads were located in many supermarkets in the same area as women’s sanitary products and advertising and packaging for incontinence pads seemed to be firmly aimed at women.
The women clearly connected urinary incontinence with a child-like or an aging state as Carol shared, ‘we revert back to being like a child as we get older …I wouldn’t dream of ever going out without a pad...’. The idea of the young child and aged person’s bodies as unreliable and unregulated was evident in the women’s conversations. Ann shared ‘I hate [incontinence], it makes me [feel] really old, and I don’t like to feel old.’
The women were preoccupied with avoiding the shame associated with public
incontinence and clearly envisaged that the solution was containing the
potential spill of urine by the wearing of pads. Pads were accessible,
offered a solution to a problem that could remain private and provided
security, ‘I wear a pad during the day and night-time... and rather than
have the problem, I wear the pad.’ The wearing of the pad contained both
the problem and the urine. Carol recalled the time when she decided
it was necessary to begin to wear a pad:
I was about 53 and I realised something had to be done about it because no more excuses could be made. I had to wear a pad. We [were driving] and [my husband] just made me wait and wouldn’t stop the car. That’s the time I realised I had to wear a pad. It was too late when he finally stopped.
Women had made some attempts at analysing their experiences with incontinence,
in trying to understand why, but the solution firmly remained in the wearing
of an incontinence pad:
I wear a pad all the time and don’t seem to soil at night. I’ve moved down to the back room so I’m nearer to the toilet. It’s my opinion, but I don’t think I really empty my bladder enough. I assume I let a little bit out and it builds up and overflows...
The idea that the wearing of pads provided a solution to a private problem
was important for the women. Mary had not been able to find the dialogue
to share her experiences with her partner:
[Incontinence] is something that you can’t discuss… I’ve never talked about it. My husband is aware I wear a pad because I put them in the bin.
Women wanted to appear to others to be regulated and controlled.
The disclosure to others that they were at risk of being incontinent or
that they were wearing pads would have revealed their inability to control
their urine as Jan shared:
I feel I am coping [with incontinence]. Although there are problems like when I know I’m 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’s what you have to do sometimes. You feel a bit of an idiot having to ask to go [to the toilet] all the time. You feel a bit sensitive about it. When you go out... I mentally organize myself. I make a list of how I am going to get to the toilet.
The impact of urinary incontinence on the life of an individual should not be under-estimated. For the women who participated in the PAR group, incontinence was much more than an inconvenience as Anne shared; ‘incontinence has changed my life more so than not being able to walk...’
Quality of life was influenced by the way in which participants were able to organise their own management of incontinence, albeit this meant compromising and controlling the situation for men and for the women it meant making sure that urine containment was reliable. McGrother, Castleden & Duffin (1987) and Mitteness (1987) identified ways that people managed their urinary incontinence was by restricting their social activities. Similarly, the men who participated in this study shared how they had made significant compromises to their social activities 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 talking through their experiences within the group they were able to identify strategies to address some of those issues. These included reducing their caffeine intake, managing their constipation, maintaining a healthy fluid intake, and using information provided by the CNA's. For example, the men were shown how they could manage urinary ‘after’ dribble by using scrotal and urethral pressure to ensure that the urethra was completely empty before leaving the toilet and avoiding wet patches on their trousers.
Women found comfort and security in containing urine by using incontinence pads. It was a private and discreet way of addressing a problem. By taking action to contain urine, women did not need to talk about incontinence with health professionals. However, by using incontinence pads without seeking assistance, they had closed themselves to the possibilities and choices of other treatments available that may have enabled incontinence to play a less prominent and threatening part in their lives.
Participants stressed that a holistic approach to their situation was
warranted. They asserted that an individual's perspective of living
with a chronic illness should be as much a part of the health assessment
process as bladder function. Initially, people may feel overwhelmed
by leaking bladders, particularly in the context of social stigma constructions
that surround incontinence. When first confronted by incontinence, it is
common for people to resort to self-help first, such as restricting oral
fluid intake and using absorbent pads as a means of dealing with an embarrassing
or frightening situation in private. Self-help does play an important
part in effective management, but it does not substitute for assessment
and assistance by a health professional. Some self-help techniques
may actually make matters worse. Restricting fluids, for example, places
the individual in a constant state of dehydration, increases the risk of
infection and irritates the bladder. Placing continence as part of
a holistic health assessment when caring for men and women living with
MS will open the ways for people to receive the assistance they need.
This inquiry revealed that women sought to keep incontinence a private issue by containing their urine with the use of easily accessible, absorbent pads. Men employed more complex strategies and made compromises in their lives so as to avoid the shame of being publicly incontinent. Both men and women sought to conceal their private lives with incontinence. This inquiry revealed that incontinence was a subject that both men and women had previously found very difficult to talk about. We urge health care professionals and clients to no longer avoid discussing this issue. As nurses, we can begin by approaching men and women with a genuine interest in their lives so as to be receptive to understanding their experiences of living with incontinence.
This paper challenges health care professionals to develop a respectful awareness of the diversity of the gendered experience of living with incontinence. Each person’s symptoms should be handled on an individual basis and placed within the context of their lives. However, urinary incontinence can be managed and it should be, for both health and quality of life. We believe that publicly acknowledging this issue is a major step toward getting known therapies to those with symptoms and to discovering new options for treatment.
Both men and women revealed personal experiences that challenged their feelings of self-confidence, and each expressed some confusion about what incontinence had meant in their lives. Through the Participatory Action Research groups, the meaning of incontinence and related issues were worked through as a result of being in an environment of mutual support, with information sharing, from meeting others with similar problems, and being enabled to talk about previously unspoken topics. Each person left with a greater clarity about the options and services available, how to manage their incontinence, and what it meant for them as an individual. The participants and Continence Nurse Advisors benefited from an exchange of knowledge about living with Multiple Sclerosis and incontinence, placing the experience of incontinence in the context of people's lives. Incontinence is not the same for everyone. We have learned to listen to what the person is saying, and not to assume what we think they will say. By sharing our research we hope the findings may be more widely incorporated into sensitive community health practices.
We wish to sincerely thank the men and women and the Continence Nurse Advisors who participated in this research. A Health Enhancement Grant from the South Australian Health Commission financially supported this research.
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