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Background: The Center for Gerontological Nursing, School of Nursing, University of Minnesota, as part of the John A. Hartford Foundation's Geriatric Nursing Initiative, convened an invitational nursing research summit on incontinence in St. Paul, Minnesota on October 16-18, 2003.
Objective: To identify new approaches for conducting urinary and fecal incontinence research in aging adults, identify strategies for reinvigorating and better positioning nursing research on incontinence, and develop recommendations for attracting new nurse investigators to incontinence research and facilitating their research training and mentorship.
Method: Forty-seven researchers, project officers, clinician leaders, doctoral students, and consumer advocates from the United States, Canada, United Kingdom, Japan, Norway, and Australia attended a 11/2 day conference involving trigger talks, reaction papers, and small and large group discussions around broad thematic areas on incontinence research. Recommendations with suggested strategies were derived from the discussion groups.
Results: Participants identified issues related to each of the summit objectives and discussed potential strategies to overcome these challenges. Twenty-one recommendations were derived: eleven recommendations focused on new approaches to incontinence research; eight on reinvigorating and repositioning nursing research on incontinence; and two on attracting and mentoring new investigators.
Conclusions: The summit model used effectively engaged an international cadre of researchers and clinicians in stimulating discussions that yielded the identification of strategic directions for conducting and funding incontinence research and strategies for reinvigorating and repositioning nursing research on incontinence.
Involuntary loss of urine or feces is an increasingly prevalent health problem in aging adults that is associated with significant psychosocial, physical, and economic consequences. Urinary incontinence (UI) affects at least 25 million Americans, including 28% above age 60 years and 15% of those below (Resnick, 1998). Women are disproportionally affected, with female-to-male ratios approximately 4:1 below age 60 and 2:1 for individuals age 60 and over (Thom & Brown, 1998). Fecal incontinence (FI) affects 5.5 to 17 million adults, with approximately 10% of adults over age 64 (Nelson, 2004). The prevalence of FI tends to be higher in women at younger ages but with advanced age the prevalence rates are similar between men and women (Nelson;Stenzelius, Mattiasson, Hallberg, & Westergren, 2004). Urinary incontinence and FI frequently coexist, especially in frail older adults. The prevalence of UI and FI is much higher in institutionalized adults, with more than 48% of those living in nursing homes having difficulty controlling their bladder or bowel (Gabrel, 2000).
Incontinence is associated with anxiety and depression (Fultz & Herzog, 2001;Nygaard, Turvey, Burns, Crischilles, & Wallace, 2003); poor life quality (Coyne, Zhou, Thompson, & Versi, 2003;Damon, Dumas, & Mion, 2004); caregiver burden (Noelker, 1987); and is a critical factor in decision-making regarding nursing home placement (Thom, Haan, & Van Den Eeden, 1997;Nuotio, Tammela, Luukkaala, & Jylha, 2003). Urinary incontinence and FI are associated with significant physical morbidity, such as urinary tract infections (UTIs), perineal dermatitis, and pressure ulcers, especially in the frail elderly (Fantl et al., 1996). In community-dwelling older women, urge UI has also been associated with an increased risk of falls and fractures (Brown et al., 2000).
The direct and indirect costs associated with incontinence are considerable (Hu et al., 2004;Langa, Fultz, Saint, Kabeto, & Herzog, 2002). The most recent estimate of the cost of UI in the elderly was $19.5 billion (year 2000 dollars), with $14.2 billion attributed to community residents and $5.3 billion to institutional residents (Hu et al.). Additional costs incurred by family caregivers for community-dwelling elderly with UI are estimated to be $6 billion annually (Langa et al., 2002). Similar cost estimates associated with FI are not available. As larger numbers of adults reach old age, the prevalence, consequences, and costs are expected to rise exponentially. Nurses as major care providers to aging adults have a key role in the prevention, detection, assessment, and management of incontinence. Evidence-based approaches in the care of the incontinent individuals are essential to insure that optimal health, quality of life, and cost outcomes occur.
This presentation describes the impetus for the research summit and its objectives; the context and background of the summit including prior work done in nursing, medical, and interdisciplinary groups related to identification of research priorities in UI and FI; and opportunities for research funding for incontinence-related projects with recognition of the current involvement of nursing. In addition, this presentation concludes by summarizing the issues discussed by summit participants and lists recommendations and strategies related to accomplishing the summit objectives.
Despite research advances in assessment, diagnosis, and treatment of incontinence over the past two decades, there remain significant gaps in knowledge related to the prevention and management of incontinence, particularly in long-term care populations. Although significant strides have been made in new technologies (e.g., drugs, devices, and surgical procedures) for the treatment of incontinence, the majority of aging adults, especially those disabled or frail, will not be candidates for their use, and will require chronic daily management of their incontinence for the remainder of their lives. While there is some evidence regarding the effectiveness of specific interventions within the homebound or institutionalized population, there is need for further study in the areas of (a) identifying who will benefit from these interventions, (b) methods for delivering UI and FI interventions to achieve optimal benefit within the constraints of existing resources, (c) testing innovative strategies through the use of new technologies that can improve incontinence outcomes for affected individuals and their caregivers, and (d) strategies to promote clinical practice adoption of research innovations. These needs are particularly important for FI because there are even larger knowledge gaps compared with UI.
The Center for Gerontological Nursing, School of Nursing, University of Minnesota as part of the John A. Hartford Foundation's Geriatric Nursing Initiative convened an invitational nursing research summit on incontinence in St. Paul, Minnesota on October 16-18, 2003. The summit brought together 47 researchers; project officers; clinician leaders; Hartford Predoctoral Scholars; other doctoral students; and consumer advocates from the United States, Canada, United Kingdom, Japan, Norway, and Australia to:
* identify new approaches for conducting UI and FI research in aging adults,
* identify strategies for reinvigorating and better positioning of nursing research on incontinence, and
* develop recommendations for attracting new nurse investigators to incontinence research and facilitating their research training and mentorship.
The impetus for the summit arose for several reasons. First was the need to provide a forum for nurse researchers to discuss key issues and potential solutions that would help in advancing the science related to UI and FI and improve clinical care delivered to incontinent patients. Nurses interested in this area of research have diverse specialty backgrounds and do not attend the same scientific meetings where it would be possible to discuss these issues.
Second was the desire to identify alternative approaches for conducting and funding incontinence intervention research. Because of the need to have sufficient statistical power, recruitment targets for intervention studies are large, often requiring multisite trials. The cost of these trials tends to be prohibitive for funding by smaller institutes within the National Institutes of Health (NIH) such as the National Institute of Nursing Research (NINR) and the National Institute of Aging (NIA) which are most likely to fund studies involving older chronic care populations. Although several larger institutes at NIH have established research networks related to incontinence and other pelvic floor dysfunction problems such as the Urinary Incontinence Surgical Trial Network (National Institute of Digestive and Diabetes and Kidney Disorders [NIDDK]), the Pelvic Floor Dysfunction Network (National Institute of Child Health Development [NICHD]), and the Weight Reduction for Incontinence (NIDDK), there are no doctorally prepared nurses currently involved in these trial networks as either principal or coinvestigators. This absence of nurse researchers is important because these networks fund pilot and collateral projects that focus on developing new methodology such as outcome measures or testing behavioral and other interventions that will provide preliminary data necessary for future grant applications. These networks are addressing questions related primarily to well adult populations. No known network is addressing incontinence-related treatment questions in chronic care populations with cognitive or mobility impairments such as the homebound elderly or those institutionalized in long-term care facilities.
Finally, the third, and compelling, reason for the summit was to address the issue of the relatively small number of nurse researchers committed to incontinence research, particularly FI research, and the even smaller number of researchers anticipated to enter this area of inquiry. Research funding for incontinence comes primarily from the NIH, with some funding for translation research projects from the Agency of Healthcare Policy and Research (AHRQ). A recent review of the CRISP database on incontinence indicates that there are over 70 NIH-funded studies underway related to the epidemiology of UI or FI, basic mechanism studies, clinical trials, device trials, and related studies that are funded by 14 institutes or centers through a variety of funding mechanisms. The vast majority of these are bladder-related. Nurses are principal investigators on seven of them, including mentored scientist awards (K type) as well as R15 and R01 awards. However, when compared to other health problems that affect Americans to a similar degree, research on bladder and bowel health has lagged behind because of a relatively modest investment of research dollars. In 2002, NIH spent approximately $67.8 million on bladder research alone (National Institute of Diabetes and Digestive and Kidney Diseases, 2002). Given the tremendous impact of incontinence on health and its societal costs with respect to long-term care and the risk of disease in other body systems, there is need for greater federal investment in research training and projects related to incontinence. There is also the need for more nurse researchers who will focus their research programs on issues related to bladder and bowel health.
The research summit built upon prior work that had been done in nursing, medical, and interdisciplinary groups related to the identification of research priorities in UI and FI. In 1988, the NIH convened a multidisciplinary consensus development conference which addressed issues related to the incidence, causes, treatment, and consequences of UI. This conference brought attention to the psychosocial impact of UI and the importance of behavioral management. In the 1990s, the Agency for Health Care Policy and Research (AHCPR) published an evidence-based clinical practice guideline for the management of UI in adults. This first practice guideline (AHCPR, 1992) and its update (Fantl et al., 1996) have had a significant effect on assessment and treatment of UI, the use of behavioral interventions as first-line therapies, and third-party reimbursement policies in the United States. These guidelines also identified areas where additional research was needed to strengthen the evidence for specific practice recommendations.
The First and Second International Consultation on Incontinence, a group organized by the International Consultation on Urological Diseases in collaboration with the World Health Organization and the International Continence Society, published recommendations made by committees composed of multidisciplinary experts on UI, FI, and pelvic organ prolapse (Abrams, Cardozo, Khoury, & Wein, 2002;Abrams, Khoury, & Wein, 1999). Their evidence-based practice and research recommendations were derived from comprehensive literature reviews on a broad range of topics including basic mechanisms, epidemiology, economics, symptom and quality of life assessment, diagnostic approaches, therapeutic interventions in selected populations including the elderly, and health promotion programs (Abrams et al., 1999, 2002).
The Cochrane Database of Systematic Reviews includes over 30 systematic reviews or proposed protocols on nonsurgical treatments in the prevention and management of UI, FI, and related bladder disorders. In general, most of the reviews on incontinence-related interventions conclude that there is inconclusive or insufficient evidence to derive a meaningful practice recommendation. An exception is the review on pelvic floor muscle exercise for women with UI that concluded it was effective for young women but inconclusive with respect to older women. The reviews on bladder training and weighted vaginal cones for treatment of UI had tentative conclusions.
The NIDDK recently published a report, Overcoming Bladder Disease, A Strategic Plan for Research 2002. This report addressed a wide range of bladder diseases including UI and focused its recommendations for NIH advocating for substantial investment in funding for bladder-related research. Although a multidisciplinary panel of scientists prepared this report, no nurses were involved in the various focus and work groups. This may have been an oversight or it may have reflected that no nurses are funded by NIDDK for incontinence research.
There are significant gaps in knowledge and clinical practice adoption related to incontinence where nurses have played a major role in developing new information and testing interventions. For example, there is a need to better understand the epidemiology of UI and FI, including the risk factors, natural history, and consequences in high-risk populations so that effective prevention strategies can be developed. As highlighted in the presentation by Sampselle and colleagues, an emerging area of research is in primary prevention research on incontinence with aging adults in community or institutional settings. Moore and Gray point out the large gender gap related to research on male incontinence that warrants investigation in multiple areas from basic to clinical research. In the presentation by Bliss and colleagues, FI is highlighted as a neglected area that is deserving of attention by nurse investigators in multiple areas ranging from basic mechanisms, epidemiology, assessment, and treatment including the prevention of secondary complications such as skin problems and psychological burden. Lauver and colleagues differentiate categories of patient-centered interventions in their presentation, and advocate for intervention studies that use tailored and individualized approaches. In Engberg and colleagues' presentation, the limited knowledge base related to effective interventions with frail older adults who are homebound or reside in nursing homes and other residential care settings is highlighted along with suggestions for research priorities. The presentation by Newman and colleagues outlines the multiple clinical questions related to the use of anti-incontinence devices, skin care protocols, and absorbent products that should be addressed by nurse investigators, including the development of new technology. In her presentation, Palmer describes how health behavior theory can be used to guide incontinence intervention research, and discusses the need for new theories to be developed that can best explain patients' treatment seeking and treatment adherence. Roe and colleagues summarize the evidence base related to the most effective strategies for disseminating research innovations into clinical practice, describe what has been used to disseminate incontinence research into practice, and call for the need for new translation research projects in community and institutional settings.
The research summit also built upon the success of several recent conferences held on incontinence. An invitational symposium sponsored by the University of North Carolina at Chapel Hill School of Nursing; the Penn Center for Continence and Pelvic Health, Division of Urology, University of Pennsylvania Medical Center; and the American Journal of Nursing held in 2002 brought together nurse researchers, clinicians, educators, administrators, and industry stakeholders to critique the current state of UI research in various settings; identify barriers to improved nursing management of UI; and provide recommendations for future directions in incontinence research, clinical practice, education, and policy (Newman & Palmer, 2003). Later that same year, the International Foundation for Functional Gastrointestinal Disorders and the University of Wisconsin Medical School sponsored an interdisciplinary conference with international participation, Advancing the Treatment of Fecal and Urinary Incontinence Through Research: Trial Design, Outcomes Measures, and Research Priorities. This conference was presented as a state-of-the-science meeting, with brief papers reviewing the research base on the epidemiology; pathophysiology; diagnostic evaluation; outcome assessment; and behavioral, medical, and surgical treatments for UI and FI. Panel discussions helped to highlight the research priorities from several consumer and professional perspectives including nursing. Papers from this conference were recently published in a supplement to the January 2004 issue of Gastroenterology.
The model consisted of 30-minute trigger talks from experts outside of incontinence to stimulate new or different ways of thinking in seven broad areas: theory-based research; prevention research; tailoring interventions; translation research; adherence measurement and interventions; technology assessment; and positioning science. These trigger talks were followed by 10-minute reactions by incontinence researchers who drew upon key points by a trigger talk speaker and their own review of research gaps, and then provided suggestions for future directions in terms of new paradigms, methods, or outcomes. Reaction speakers received the slides of the trigger talk experts ahead of the summit in order to help prepare their own presentations. Several formats were used for the group discussions including small group discussions at tables which had preassigned seating in order to have a mix of researchers from different universities and countries, clinician leaders, project officers, and consumer advocates; larger group discussions responding to the small group reports and the priority setting done by individuals marking their top three priorities on large posters listing the key topic areas.
A challenge in designing the model for the 11/2 day research summit was to engage researchers, clinician leaders, and consumer advocates in identifying strategies that would reinvigorate interest in pursuing research on incontinence beyond the small cadre of current investigators. Another challenge was how to cover important issues related to UI and FI research yet allow enough time for group discussions. A conference facilitator was a key part of the summit model. This expert kept presenters and group discussions on time, kept small groups on task and limited redundant ideas in large group discussions, and helped the group crystallize its thinking around key areas.
Because one goal of the summit was to foster collaboration among researchers and clinicians, there was a deliberate effort made to form small work groups to derive future research directions in selected topic areas. These groups were spearheaded by one of the trigger talk or reaction speakers who took leadership in organizing the group after the summit to write a presentation summarizing the research gaps and identifying new approaches for research in a particular topic. These presentations are included in this supplement of Nursing Research. The immediate summit outcomes were evaluated through a conference evaluation form and the longer-term outcomes are to be evaluated within 10 months.
A brief identification of the issues addressed at the summit and a description of the recommendations and suggested strategies that were derived from the discussions are presented (Table 1).
Federal research dollars for incontinence research are scarce, and there is stiff competition for limited funding. Although there was significant NIH funding in the 1990s related to behavioral interventions for UI, it has been increasingly difficult to present a compelling proposal in this area in recent years. Incontinence studies tend to be empiric in nature rather than being theory-driven. Few studies have incorporated theories related to individual or organizational change that would be helpful in predicting the initial adoption and the long-term adherence to incontinence interventions. The majority of clinical trials on UI interventions have been conducted in White, middle-aged community-dwelling women or White, older female nursing home residents. Although there has been significant growth in the development of new UI drugs, few nurse researchers have studied the effect of drug therapy as a sole or combined intervention in UI management. Research on bowel health or FI has been minimal, with few nurses conducting studies in these areas. Similarly, there is need for research in the areas of best practices related to skin care protocols for prevention and treatment of incontinence-related dermatitis, use of absorbent products, catheter use and care, and other anti-incontinence devices. There is limited information on UI and FI alone or in combination, and their management in ethnically diverse populations and in advanced age groups. Interventions with older incontinent adults, especially those with cognitive or physical impairments, tend to be costly because they are labor-intensive. Clinical settings and national third party insurers do not consider this element when allocating staff resources for patient care or in providing adequate reimbursement to cover the true costs associated with optimal incontinence care. There are significant needs related to the improvement of clinical care of UI and FI across various long-term care settings that warrant urgent attention by researchers.
1. Encourage research to address incontinence and its associated symptoms within the context of high-risk populations and other chronic health conditions.
Preventive or therapeutic interventions are limited in many high risk and understudied populations including patients with irritable bowel syndrome, cerebrovascular accidents and other neurological diseases, diabetes, depression, obesity, and smoking addiction. Also, there is a need to develop and test interventions for those with other bladder diseases such as overactive bladder, interstitial cystitis, prostate cancer, and recurrent UTI. Consideration should also be given to developing approaches for family care-givers for use in managing their burden associated with providing physical care to an incontinent family member having memory or mobility impairment.
2. Conduct research to develop preventive and therapeutic approaches for UI and FI that are sensitive to age, gender, and ethnicity and develop validated outcome measures in these various populations for use in various settings.
Nurse researchers are encouraged to develop and validate instruments that can be used as outcome measures when studying different age, gender, and ethnic groups, including adults who are cognitively impaired, and to test culturally sensitive interventions for use with individuals or their caregivers.
3. Encourage the use of theory and conceptual models to guide research design and methodology, including the development of incontinence interventions.
Rather than relying on empirics alone when conceptualizing studies, incontinence research would benefit from additional theory-driven protocols relying on a strong conceptual integration of aims and hypotheses, design, methods, and outcomes. Patient and staff adherence are key factors in determining whether interventions are effective and whether intervention effects are maintained over time. Theories on health behavior change, innovation diffusion, and organizational change could be helpful in designing effective interventions.
4. Increase the number of prevention and translation research projects in community and institutional settings.
Prevention research is needed not just for continent, middle-aged adults but also for those who are continent, older, and are receiving long-term care. Translation research projects needed include those that test innovations deemed effective in controlled trials but must meet the challenge of dissemination into the real world of various clinical settings. Researchers should work with clinicians in these settings to develop dissemination strategies that are most likely to be effective.
5. Investigate new and existing technology for interventions with incontinent individuals and their caregivers.
The telephone, computer, World Wide Web, and personal digital assistants (PDAs) offer potential solutions for reaching and intervening with individuals with incontinence and their family caregivers who may be reluctant to seek formal care, have transportation and other access issues, or have memory problems that make it difficult to adhere to various treatment regimens.
6. Increase the number of studies related to bowel health and FI, skin care, and containment devices and products.
Studies on bowel health including constipation, diarrhea, and FI are greatly needed. Nurse investigators are encouraged to become involved in designing and leading independent as well as industry-sponsored studies on skin care protocols for prevention and management of incontinence-related dermatitis, absorbent products, catheter care, and other anti-incontinence devices.
7. Conduct companion studies related to UI and FI within the framework of related large epidemiological studies and multisite clinical trials.
Potential opportunities exist for addressing incontinence questions in ongoing epidemiological and clinical trials. For example, study committees for longitudinal studies on aging and chronic diseases such as cardiovascular disease or diabetes might allow for the addition of several incontinence questions to their assessment protocols. This would enable study of the natural history of UI and FI and their risk factors, thus providing a natural experiment. Similarly, clinical trials on related topics such as smoking cessation, depression management, and exercise could offer the opportunity to collaborate with other researchers to study the effect of interventions in a cost-effective manner. The involvement of incontinence researchers during the study initiation who would be able to add appropriately worded questions on incontinence to baseline and followup evaluations would help insure that subsequent publications related to incontinence would not be rejected because of measurement problems.
8. Encourage cost-effectiveness analyses in prevention and intervention trials and other methods to demonstrate the cost savings or value added of incontinence intervention.
Effective incontinence prevention and management may save other types of costs such as pressure ulcers, UTIs, anti-incontinence surgery, and hip fracture repair that could result in overall cost savings. Thus, researchers are encouraged to include cost-benefit analyses in intervention projects, and should identify potential cost savings in other areas that could be applied to incontinence care. Also, researchers should consider if there are more efficient methods of delivering interventions than methods previously incorporated in past clinical trials that could result in similar effectiveness rates.
9. Encourage nurse investigators to develop and lead interdisciplinary programs of research.
Incontinence is a multifactorial problem that often warrants an interdisciplinary perspective in designing and testing cost-effective solutions. Nurse investigators are encouraged to establish interdisciplinary research agendas and teams to further scientific knowledge related to continence care. For example, principal investigators should carefully evaluate the knowledge and skill sets needed to conduct a particular project. Depending on the research question, design, or instrumentation, different types of experts might be needed. For example, a computer scientist could assist in software design to deliver a new intervention, a health economist would be essential for assisting in the development of a cost-effectiveness analysis, an epidemiologist would be important in conducting any type of survey research, and a neurologist would be essential in a study of the natural history of incontinence following stroke. Additionally, nurse researchers should seek out opportunities to be part of interdisciplinary teams where they could make unique scientific contributions that would enhance the overall research and build future collaborations.
10. Establish partnerships with clinicians to identify and research issues relevant to incontinence care and with local, regional, and national organizations that address related healthcare issues.
To bridge the gap between practice and research, nurse investigators are encouraged to form research partnerships with clinicians who are involved in delivering continence care in a variety of settings. Clinicians have relevant ideas about how to improve care and cost outcomes that could be validated by well-designed studies. Nurses are also encouraged to establish partnerships with lay organizations such as Weight Watchers; the National Association for Continence; the International Foundation for Functional Gastrointestinal Disorders; or specialty nursing associations such as the Wound, Ostomy, Continence Nurses (WOCN) Society's Center for Clinical Investigation. Strategies such as the Association of Women's Health, Obstetric, and Neonatal Nurses' (AWHONN) Continence for Women project conducted at 35 clinical sites demonstrated that a multisite trial could be successfully executed in a relatively short time frame and at much lower costs than most NIH clinical trials (Sampselle et al., 2000a, 2000b).
11. Encourage collaborative research among nurse researchers at different sites nationally and internationally.
Collaboration among nurse investigators at different sites nationally and internationally would help to strengthen research protocols and increase the generalizability of research results. For example, the use of the Minimum Data Set (MDS) by several countries provides a potential opportunity for cross-national research on incontinence in long-term care facilities. The International Continence Society is an organization that should be used to foster research collaboration among international nurses.
Concerns were voiced at the summit that incontinence is still not recognized as an important and treatable problem by the public, nurses, other healthcare professionals, healthcare organizations, and third-party payers. Concern was also expressed that incontinence, present in a significant number of aging adults, is not given priority by clinicians because of the low likelihood of its cure. Clinician leaders and researchers noted that many times knowledgeable nurses are underrepresented in decision-making forums within institutions, healthcare organizations, third- party insurer groups, governmental agencies, and national and international groups where incontinence care and research are discussed. Nurse leaders noted that within these groups, physicians more often are perceived to be the leaders of clinical and research teams, the major care provider, and research facilitator. The general perception was that nursing is viewed as important but in a supportive, secondary, or less-prominent role than medicine. Thus, nurse researchers need to take a more proactive role in reaching out to stakeholder groups such as consumers, nurses and nursing organizations, other healthcare professionals, interdisciplinary groups, healthcare organizations, and related foundations and industries. This will require commitment and perseverance to build consensus and collaborations that can further research efforts related to incontinence. Nurse researchers have typically been funded for incontinence projects by NINR and NIA, with the majority of projects funded through NINR. Given that these are two of the NIH institutes with the least amount of dollars, research funding is limited for all projects that might be conducted by nurses; therefore, alternative sources for research funding are needed. Additionally, lobbying efforts are needed to increase funding for research on chronic care problems such as incontinence that are funded by NINR.
1. Build public and professional awareness related to incontinence as a treatable disease that is amenable to intervention by nurses.
UI and FI are underreported and underdetected conditions. Nurse leaders need to work with consumer advocacy organizations, nursing groups such as New York University's John A. Hartford Foundation's Geriatric Nursing Institute, and nursing specialty organizations to build public and professional awareness through social marketing approaches regarding incontinence as a treatable condition and the role of nurses in its treatment. Provision of attractive and accurate information in a variety of media to general public and to healthcare consumers must be developed.
2. Increase the presence and visibility of nurses on local, regional, and national advisory boards; interdisciplinary national and international committees; and other decision-making groups that are concerned with incontinence and its related symptoms.
Nurse researchers and clinician leaders need to actively seek out positions in key groups and organizations where decisions are made about incontinence and incontinence-related research. There are many forums where the presence of nursing has been nonexistent or minimal, such as on expert panels of the Food and Drug Administration or Advisory Councils for several of the NIH institutes that address continence health issues. For national advisory groups, the specialty nursing organizations and the American Nurses Association could be helpful in this effort by nominating individuals for key positions.
3. Encourage grant submissions to individual institutes at NIH and AHRQ as appropriate.
In addition to considering NINR and NIA for research funding, nurse researchers are encouraged to consider funding from other NIH institutes when there is a good fit between the project's goals and the Institute's priorities. Investigators should be in contact with project officers to discuss their research plans, and should also consider the strategy of having dual funding assignment to two Institutes if appropriate. This may increase the odds of having their project fully funded if the priority score is high. Nurses are also encouraged to consider the development and submission of translation research grants to AHRQ.
4. Consider use of foundation and corporate funding to support incontinence research efforts with appropriate safeguards.
Given the shrinking federal research dollars, nurse researchers are encouraged to be creative in seeking support for their research programs. For example, foundations whose missions are to address chronic illness or the elderly such as AARP or the Alzheimer's Association might be interested in supporting incontinence projects. Companies that manufacture medical devices and products related to incontinence might also provide funding support depending on the particular research question. Similarly, pharmaceutical companies have postmarketing funds for studies that could be tapped by nurses. Large business corporations may also support projects that improve their employees' health or may be willing to provide funding as part of their community giving program. Academic investigators are encouraged to develop contracts with corporate sponsors that clarify the roles for each party concerning input into the research design and methods, ownership of the data, and unrestricted dissemination of the results. All of this must be carefully negotiated in a contract before any research is conducted if the partnership is to succeed. Nurse researchers should contact the sponsored projects office of their university for assistance in negotiating corporate contracts prior to the completion of the negotiations. Any support by foundation or corporate sponsors for research should be publicly acknowledged when disseminating results.
5. Link with healthcare systems, quality improvement organizations, third party payers, and governmental agencies to design and test evidence-based approaches for managing incontinence.
Nurses should seek out opportunities to develop and test systems for improving delivery of incontinence care. Organizations that have a vested interest in healthcare quality or costs either as a provider or an insurer of health-care might be interested in participating in projects or in funding them such as managed care organizations, quality improvement organizations, and third-party insurers. In testing systems of incontinence care delivery, satisfaction, health, and cost outcomes should be evaluated.
6. Encourage teaming up with bioengineers, other scientists, and clinicians to create and test products for incontinence management through the Small Business Innovations Research (SBIR) and Scientific Technology Transfer (STTR) mechanisms at NIH.
The development of new technology is an important strategy for improving incontinence care. Nurses have creative ideas for products and devices that could improve clinical care and could be more effective in incontinence containment but they often lack the technical knowledge regarding how to actually develop them. By partnering with bioengineers, computer science experts, and others with the appropriate technical knowledge, these ideas could be made into actual products. The SBIR and STTR grant program through NIH are ideal mechanisms for developing and testing innovative ideas that could result in marketable solutions.
7. Disseminate research broadly through presentation at interdisciplinary scientific meetings, articles in journals with the widest impact, and media releases announcing grant funding and study outcomes.
Nurse researchers should be encouraged to present study outcomes at national and international interdisciplinary meetings where incontinence researchers are most likely to be present. Investigators are also encouraged to publish findings from large studies in top tier journals likely to reach the broadest audience of nursing and interdisciplinary healthcare professionals. In addition, nurses should contribute articles in journals that reach clinicians most likely to adopt new innovations. Press releases timed immediately prior to publication of study results can heighten awareness of nursing research and broaden the dissemination of study results.
8. Build coalitions with professional and consumer organizations to advocate for incontinence research funding.
There needs to be a vigorous lobbying effort by nurses and nursing organizations to increase funding for incontinence research. Different strategies will be required depending on the group that is being lobbied (e.g., politicians, federal grant agencies, foundations, or industry). Recently, two nursing specialty practice organizations (WOCN and Society for Urologic Nurses and Associates [SUNA]) joined forces and formed an effective group that successfully addressed reimbursement issues related to pelvic floor muscle rehabilitation. Nurses should think strategically about the best methods to advocate for increased incontinence research funding, and whether it would be in the best interest of nursing to join coalitions or collaborations with consumer and other professional organizations such as the Simon Foundation, National Association for Continence, International Foundation for Functional Gastrointestinal Disorders, American Urological Association, American Urogynecological Society, National Kidney Foundation, and the American Foundation for Urologic Disease's Bladder Health Council.
Research projects focused on management of chronic conditions such as UI and FI that do not appear life-threatening and have the misperception of being a minor inconvenience or hygienic problem only are not "glamorous" in terms of attracting new investigators to the field. Several senior nurse investigators who have had NIH-funded projects on UI have retired or will be retiring in the next few years. This will leave a significant void in the field with few younger researchers interested in developing research programs on incontinence. Presently, there is a dearth of nurses interested in studying FI. Only two nurses, one in the US and another in the UK, have active programs of research in this much-neglected area. Nurses often have problems with educational mobility, and have difficulty finding mentors to supervise dissertations and postdoctoral studies on incontinence.
1. Establish mechanisms for interested students and clinicians to join research teams conducting incontinence research.
Researchers who are passionate about their work are often inspiring role models for students and clinicians who become excited about the same type of research as the researcher. Nurse investigators should actively solicit student involvement in their research programs by sponsoring undergraduate, masters, and doctoral research opportunities such as honors projects, thesis and other research projects, directed studies, and research practica. They should also establish research partnerships with clinicians who are involved in incontinence practice either locally or through professional associations such as the Society for Urologic Nurses and Associates, the WOCN Society, or the Rehabilitation Nurses Association. The research mentorship and participation will help encourage students and clinicians to pursue doctoral education and research careers in incontinence.
2. Encourage more beginning researchers interested in incontinence research to seek mentoring and postdoctoral training from senior nurse investigators who are distance mentors.
Nurse researchers are encouraged to serve as outside members on doctoral students' dissertation committees for those students pursuing incontinence research questions. This mentorship will also help establish a relationship that leads to further postdoctoral training by the doctoral student and the researcher. Given the availability of telephone, fax, and e-mail communications, nurses interested in postdoctoral training should be encouraged to consider writing postdoctoral training applications or mentored scientist awards with a distant incontinence researcher.
The research summit resulted in identification of strategic directions for incontinence research that were developed from the rich discussions among national and international nurse researchers and clinicians. There were many points of mutual agreement among investigators from the different countries. Through formal and informal discussions and the writing groups the summit provided a springboard for future collaborations. Participants praised the summit model as stimulating their ideas for new approaches to conducting and funding incontinence research and strategies for repositioning nursing research on incontinence. In retrospect, incorporating a World Cafe process might have facilitated group discussions so that there would have been time to address all aims (http://www.theworldcafe.com). It was not possible to ensure a commitment by the participants to future steps to continue the momentum generated by the research summit. Efforts could be continued on an informal basis at national and international meetings where a significant group of nurses will be attending with support for communication through the listserv. An alternative approach suggested was that a consumer or professional organization should be approached about creating a chat room on their Website for nurse researchers to continue summit discussions. This approach is being pursued.
The group of nurse scientists, clinician leaders, and project officers gathered at the nursing research summit with the intention of identifying new approaches for incontinence research, strategies for reinvigorating and repositioning nursing research on incontinence, and attracting and mentoring new investigators. The recommendations and the series of presentations generated from the summit will be extensively distributed not only within nursing research and professional circles but also within interdisciplinary research groups as a strategy to heighten awareness of nursing's involvement with incontinence research, and to help attract new investigators to the field.
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