Continence Fact Sheets
Bringing INcontinence Out of The Closet:
Introduction
On March 27 and 28, 1998 a two-day workshop was organized in Toronto by The Canadian Continence Foundation, with the goal of creating a common understanding among Canadians from many different walks of life about the real needs of individuals who experience incontinence and the impact of incontinence on their quality of life. We aimed to increase commitment to improving public and professional awareness and knowledge about incontinence, and to explore partnerships which might help achieve this, and which would facilitate seeking and accessing help by sufferers and their caregivers.
45 participants and 4 observers from all parts of Canada, representing various branches of healthcare, education, government, media and industry, as well as individuals experiencing incontinence, came together to start the process of bringing incontinence out of the closet. In successive rounds of discussion and voting, they identified priority issues, developed many possible strategies to deal with them, and ultimately proposed detailed and concrete action plans in 5 different fields.
This workshop achieved successful and concrete outcomes due solely to the clear commitment and dedication of all participants. The enthusiasm and drive demonstrated over the two days point to the importance attributed to this issue by all those who are directly or indirectly affected.
This project was made possible through a financial contribution from The Population Health Fund, Health Canada, Division of Aging and Seniors.
The views expressed herein do not necessarily represent the official policy of Health Canada or the opinions of The Canadian Continence Foundation
Excerpts from workshop presentations
Urinary Incontinence
It is difficult to define incontinence in a way that is meaningful to everyone. In everyday language, incontinent means "unable to restrain a natural discharge, as of urine, from the body." A scientific definition is "a condition in which involuntary urine loss is a medical or hygienic problem and is objectively demonstrable" [1].
Urinary incontinence is common at all ages. It affects one in five Canadians aged over 65. The estimated cost is high: between $1000 and $1,500/year for each senior in the community who experiences incontinence (for purchase of products), and between $3,000 and $10,000/year for those in long-term care (products and nursing care) [2]. (Note that these costs do not address the many other human resource costs and treatment/management costs incurred for incontinence by all sectors of the Canadian health care system.)
Needs and Barriers
About half of those with incontinence do not consult a health professional [3], partly because of the myths surrounding it: that it is an inevitable part of aging, that it is to be expected after childbirth, that it is not treatable except by surgery, and that it should be accepted and managed by pads [4].In a survey among almost 800 Canadians experiencing incontinence, 90% reported that the incontinence has an impact on their overall feeling of well-being, and over 80% reported feelings of embarrassment and frustration [4]. Among services which respondents would perceive as useful, reading materials were most frequently checked, with educational sessions on incontinence second. The five information topics most frequently rated as useful related to:
1. Side effects and risks of various treatments
2. How to improve and/or manage the leakage
3. How to choose products to manage the leakage
4. Where to find medical and other help
5. Costs and reimbursement/coverage for various treatments and products
The study also noted that for 66% of those who had consulted a healthcare professional, the general practitioner was the first. This points to the critical importance of interested and knowledgeable general and family practitioners as the first point of access to continence care. The pharmacist also seems to be an important professional with whom particularly the lower education and income groups will consult.
According to a qualitative study recently implemented among seniors who themselves are experiencing incontinence, it causes significant lifestyle changes:"I don't want to participate in any activities"
Overwhelming anxiety: "You can't imagine how horrible it is" and significant concerns for caregivers, embarrassment, and frustration with some health care professionals (but praise for others). For many seniors it is a relief to find out that others have the same problem [5].
Cross-sector Viewpoints
A general practitioner from rural Quebec:
"Few patients can bring themselves to talk openly or willingly to their family physician about incontinence, but there is such a huge number of potential patients that specialized incontinence clinics will never be able to cope with them. Family practitioners supported by nurses and social workers are key, but do also require clearly laid down referral pathways to specialized clinics. A change in societal philosophy is required, so that funding is available for home improvements and devices to keep incontinent patients out of institutions, with great benefit to patients and savings to society."
A community continence nurse:
"Many successful interventions to improve incontinence exist, but accessibility to services is a key issue. We need more continence advisors, more educational opportunities for caregivers, professionals and the public, better directed funding for incontinence services in the home and in clinics, a focus on prevention, and partnerships among nurses, physicians, product suppliers, pharmacists, and social workers."
A nurse on her experience with incontinence in long-term care:
"The highest prevalence of urinary incontinence occurs in long term care settings, with estimates between 50% and 70%. It has devastating physical, psychological and social consequences for residents, their involved family, as well as staff. There are also significant ongoing financial costs associated with incontinence care."
"Incontinence is frequently expected in individuals living in nursing home and chronic care facilities, and accepted as normal. Therefore, potential assessment and treatments may not be provided."
"In order to change attitudes and practices, it is important to determine whether internal or external incentives and processes are in place to promote and maintain continence and to manage incontinence most effectively. This care should be guided by the residents and families’ perspectives."
Someone who suffered from incontinence for many years:
"I was told that incontinence was normal by my doctor, but this comment did not correspond to my day-to-day experiences: I was pretty sure that models and actresses on TV were not wearing diapers; I never heard anyone at a meeting say 'Can we take a break? I need to change my pad.' How does one dispose of pads in a workplace or at someone else's house? It was difficult to communicate how incontinence was affecting me: if I complained then I was thought to be neurotic, but if I didn’t raise it as an issue then nothing was going to get done about it."
A senior who experiences incontinence:
"Why am I more incontinent after 4 operations than I was before, 25 years ago? I am no longer able to do many of the things I love doing, such as swimming and cross-country skiing. Why isn't research directed at curing this problem? The price of incontinence products is far too high for their quality, bearing in mind that they have to be used every day of every year."
The viewpoint of an informal caregiver from rural Ontario could not be given in person, because the invited caregiver could not leave her mother, who suffers from Alzheimer’s disease and is incontinent. She herself also experienced incontinence temporarily several years ago. Below are excerpts from her letter which was read on her behalf:
"I've been hunting left and right to find coverage for my mother for the weekend of the workshop, however, weekends are bad to get help in rural areas..we could move her to an institution for the weekend..however with Alzheimer's it's so frightening and confusing when they are moved to surroundings ..foreign to them..should one choose to keep an Alzheimer's patient at home like we have..one is given diapers of a rather inferior quality..enough for 4 changes per day. In our case, we are fortunate to be able to add to our supply with full briefs of a much better quality. We go through two packages every two weeks ..that cost is around $50..no compensation for these..In my own case of seven months of incontinence..there was not support whatsoever..nobody to talk to and NOBODY to support what I needed and couldn't really afford..."
The president of one of the largest companies in the absorbent products industry:
"The incontinence business will develop greatly in the 21st century, as the baby boomers become a large group of healthy seniors with high disposable income. As the market expands, competition and investment will result in better products at premium prices. Products will change to become more like normal clothing. Incontinence will be brought out of the closet by changing attitudes, viewing it not as a disease but as part of ordinary life. The commercial barriers to be overcome are the high price of entry into this sophisticated market, and the correspondingly high price of failure."
There are some healthcare professionals who see the solution in more education, more personnel, and better directed funding. They believe that incontinence is not normal but a condition or disease. Those who themselves experience incontinence expressed a need for better, cheaper products, and for health professionals to fix the problem, not just talk about it. The industry viewpoint indicated a goal of improving absorbent products so that incontinence can become accepted as part of normal life.
The challenge is to bring people holding different views into partnership, so as to remove the barriers which prevent the needs of consumers being met, or to meet consumer needs despite the barriers.
Key Issues And Strategies Defined
At the workshop
Please note that the following issues and strategies are not necessarily mutually exclusive, nor are they by any means exhaustive. Decisions on areas to pursue at the workshop were made based on progressive rounds of voting by participants.
Issue 1:
How to develop a system to facilitate an individual’s journey to appropriate assessment, treatment, and follow-up.
Strategy: Establish a national multidisciplinary and consumer committee that will develop and issue standardized incontinence care guidelines. First step for this strategy will be to develop a core group of individuals, who will submit a funding proposal for initial consensus process funding. The results of the consensus conference will be the basis for the development of preliminary guidelines.
Another important strategy for this issue also discussed is the establishment of local multidisciplinary continence clinics, interest groups, and outreach programs. This is critical to facilitating service access for individuals in the various local areas.
Issue 2:
How to bring diverse groups together (general public, community organizations, business, healthcare providers, individuals with incontinence, government) in partnership to make incontinence a priority health issue in terms of resources and focus.
Strategy: Establish links with other interest groups, organizations and associations dealing with incontinence issues. Working with other organizations such as seniors' groups, fitness, pre-and post-natal, menopause, disability, womens' and wellness promotion organizations, as well as key events like the International Year of Older People will facilitate the efficient broadening of public education and sensitization to the issue of incontinence.
The first step in this process will be to disseminate general information packages on incontinence and The Canadian Continence Foundation to all workshop participants, who can then initiate linkages and programs with local organizations for Incontinence Awareness Month 1998.
The idea of redefining the word "life-threatening" to include "threat to quality of life" was also discussed as an important element to increasing the overall resources and priority allotted to incontinence as a health issue.
Issue 3:
How to improve public knowledge about incontinence.
Strategy: Develop advertising guidelines for and with industry to improve accuracy and effectiveness of advertising content. Discussion addressed the fact that industry uses far-reaching vehicles to reach the public, like TV, magazines and industry brochures. These vehicles represent important media through which to reach the public on an ongoing basis with key high-impact messages about incontinence. One of the key messages will be to encourage individuals to seek help from healthcare professionals and from The Canadian Continence Foundation.
Issue 4:
How to develop a system in long-term care that encourages and rewards continence rather than incontinence.
Strategy: Develop continence as a care requirement for licensing/accreditation for all facilities. The first steps will be to gather information provincially and nationally about existing standards, and then to develop a process to advocate for inclusion of continence as a care requirement.
Issue 5:
How to improve professional knowledge about incontinence (e.g medical, nursing, physiotherapy, pharmacy, social workers).
Strategy: Review all health professional education programs, to better understand to what extent incontinence is included. This will be a first step toward making recommendations for changes with regard to incontinence focus, in health professional undergraduate, graduate and post-graduate education programs. Another general strategy discussed for this issue addressed the importance of developing a few important messages which will help increase professional sensitization to this issue, and which would appear continuously in professional publications.
Other Identified Issues
In addition to the key issues outlined, many other important issues were raised and merit further attention. Some are included below:
- The need to provide professionals with an understanding of the incontinence experience from the consumer's point of view.
- The need for research and product development for treatments and management options which meet actual consumer needs.
- The need for a common vocabulary to describe and measure the impact of urinary incontinence.
- The need to broadly disseminate public knowledge with regard to what questions to ask about incontinence and who to ask.
- The experience of continence organizations around the world has shown that the media are the key to raising awareness, and that, to gain media attention, a hook such as a book tour or a vote on public washrooms is required.
- Worldwide, however, it has proved a challenge to find a media hook that does not compromise the key message. [6]
Conclusion
For each of the 5 key strategies a committee identified specific next steps, timing and responsibilities. Plans are now in motion. The status of each plan will be followed and shared with all interested parties via the web site of The Canadian Continence Foundation (www.canadiancontinence.ca) throughout 1998. A key challenge raised was funding, which must be integrated into the overall planning and setting of priorities.
The presentations and discussions at the workshop made clear the importance of a multidisciplinary approach to continence care, with a focus on the actual needs of those affected. They showed that incontinence is an issue with significant impacts on quality of life and cost. It cuts across so many different sectors of society and parts of the health care system that it can only be properly addressed through cross-sector partnerships.
The workshop proved to be a ground-breaking event, which led to the creation of unprecedented Canadian cross-sector and cross-province partnerships in the area of continence promotion. The event initiated fundamental elements required to raise professional and public awareness and knowledge of incontinence, and to improve access to quality continence care and services in Canada.
Acknowledgements
Special thanks to the members of the workshop planning committee, and to the workshop coordinator Dr. Derek Griffiths, who all represent many different sectors, yet came together to contribute their time and expertise to one goal: the success of this workshop and its outcomes.
The Canadian Continence Foundation is grateful for the financial and overall support for this project received from the Population Health Fund, Division of Aging and Seniors, Health Canada.
The Foundation also extends sincere thanks to Procter & Gamble Inc. for its ongoing support of this cause and for an educational grant toward this project.
References
1. International Continence Society. Standardization of terminology of lower urinary tract function. Neurourol Urodynam 1988;7:403-426.
2. The needs of people suffering from incontinence and the barriers encountered: A review of research and publications related to the Canadian situation. Unpublished draft prepared by Derek Griffiths for The Canadian Continence Foundation, 1998.
3. Angus Reid Group, Urinary incontinence in the Canadian adult population, 1997.
4. Experience, perceptions and needs among a large-scale Canadian population experiencing incontinence in the community. Unpublished draft prepared by Malvina Klag for The Canadian Continence Foundation, 1998. The study was made possible thanks to an educational grant from Procter & Gamble Inc.
5. Older individuals' perspective on incontinence: Phase I and II qualitative research reports. Prepared by Cherrie Holdings for The Canadian Continence Foundation, 1997, 1998.
6. Raising awareness of incontinence: Success and failure around the world. Unpublished draft prepared by Derek Griffiths for The Canadian Continence Foundation, 1998
