Marina Kirillovich, BSc, Saima Rajabali, MBBS, Adrian Wagg, MBBS
Division of Geriatric Medicine, Department of Medicine, University of Alberta, Edmonton, AB, CanadaDOI: https://doi.org/10.5770/cgj.27.758
ABSTRACT
Introduction
Urinary incontinence (UI), the complaint of involuntary leakage of urine, has a substantial impact on the quality of life of older adults. Most UI research is driven by researchers and lacks the patient perspective. The goal of this qualitative study was to gain the perspective of older adults in formulating a research agenda tailored to address their questions and improve their experience with managing UI.
Methods
Implementing a community-based participatory research framework, an advisory group of eight older adults with UI were recruited to be on the research team. An initial focus group was conducted to learn about their research needs. Nominal Group Technique was used to reach saturation of themes and data was analyzed thematically. Employing a Delphi consensus method, a national online questionnaire containing 20 priorities for future UI research and education was developed in collaboration with the advisory group.
Results
59 older adults with UI rated each priority on a Likert scale. Priorities which advanced to the second round were re-rated, with an 85% response rate. 11 priorities of ≥80% agreement were retained. The highest rated priorities included relationship between physical activity and UI; support for those with UI; causes of UI and its management; sleep and UI; and public restroom accessibility.
Conclusions
Findings from this study will help researchers and health-care professionals understand and address the needs of older adults with UI. Efforts should be made to translate research findings in this area and disseminate them in a medium accessible to older adults.
Key words: bladder problems, older adults, seniors, patient priorities, patient education, knowledge translation, Community Based Participatory Research (CBPR), Delphi, Nominal Group Technique (NGT)
Urinary incontinence (UI) is defined as the complaint of any involuntary leakage of urine.(1) UI has a substantial impact on quality of life and is associated with social isolation, depression, shame, poor self-rated health, and falls.(2–5) UI also leads to significant costs through use of containment products (pads), health-care resource use, loss of work, and increased caregiver strain.(6–8) Approximately 350 million people worldwide have UI;(9) studies report its prevalence to be between 12% and 55%.(10,11) The prevalence of UI increases with age in both men and women;(12) however, its incidence is higher in women.(13) This is due to age-related physiological changes and the impact of pregnancy and parity.(14)
Despite being common, with adverse effects on wellbeing, many people with UI either do not discuss it with their healthcare provider or delay seeking help, choosing instead to suffer in silence.(15) UI is still considered a taboo subject, associated with considerable stigma,(16) and almost 85% of incontinent older women do not seek help.(4,11) UI is often not reported, either because of embarrassment or the belief that incontinence is a normal part of aging.(17) Women consider it as a natural consequence of childbirth and physiological decline related to aging. Men view incontinence as a loss of masculinity, associated with feelings of embarrassment, and experience difficulty in speaking with others about it.(4,18)
The patient perspective in incontinence research is still lacking. Where research does exist, most studies are quantitative.(18) Qualitative studies also tend to be driven by researchers(17) and do not take the needs and views of people with UI into consideration. Likewise, older adults are often under-represented in research, and their involvement in participatory research, as collaborators rather than subjects or participants, is rare.(19)
Community based participatory research (CBPR) offers a promising approach to understand the perspectives of older adults with UI, identify issues of concern to them, and involve them in decision-making regarding the management of UI and treatment outcomes, giving them co-ownership of the research, and empowering them in the process.(20) In this study, we aimed to gain an understanding of the perspective of older adults in formulating a research agenda, tailored to address questions posed by them to improve their experience and the outcomes from management of their UI that are most important to them. In addition, we hoped to stimulate conversations and education about UI by providing participants with a forum in which to discuss their condition.
This study was conducted in three phases: 1) a focus group (FG) with membership of our UI Advisory Group to establish “problems”; 2) results of a Nominal Group Technique (NGT) meeting were combined with FG themes to achieve within-group data saturation; and 3) FG and NGT themes identified as most important by the group were developed into a questionnaire that was used to survey a larger sample of older adults with UI using a Delphi consensus method (Figure 1). Phase 1 of the Delphi technique required that a list of questions or statements be provided to the participants for ranking.(21) However, since this study took a CBPR approach, our UI Advisory Group, instead of researchers, were encouraged to generate a list of questions that they felt needed addressing to improve management of UI. A focus group and the NGT facilitated this process.
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FIGURE 1 Flow chart of the research process | ||
A team of eight community dwelling and English-speaking older adults, who reported having UI, was recruited. Although research studies most commonly define an older adult as a person of age 65 and over,(22) this definition is highly contested. In Canada, a variety of discounts are offered to individuals aged 50 and above. For the purposes of this study, any individual over the age of 50 who self-identified as an older adult satisfied the inclusion criteria. This core group of participants served as the UI Advisory Group and worked with the researchers to plan, inform, and design subsequent stages of the research. Participants for this core group were recruited via seniors’ activity centres, Men’s Sheds (https://www.mensshedscanada.ca/), continence and urogynaecological clinics, continence physiotherapy clinics, newsletter ads, previous study participants, and participants’ social connections.
This study received approval from the University of Alberta Research Ethics Board (Pro00091049).
During the first meeting, the UI Advisory Group was reminded of their role as research team members, rather than participants, as well as that their opinion is held in high regard by the research team in all stages of the study. They also received training on ethical conduct and participated in a FG discussion. The initial FG was important to start a conversation and identify problems that participants faced with managing UI in their day-to-day lives. The primary FG question was: “What are some of your questions or concerns about urinary incontinence?” The question was open-ended to allow for responses addressing any aspect related to the experience of UI. Two researchers facilitated the discussion and picture prompts were prepared to encourage sharing. FG data were transcribed and thematically analyzed by the researchers.
During the second meeting, FG themes identified by the researchers were fed back to the Advisory Group using a NGT to achieve within-group saturation of themes. NGT has been employed in studies to generate content of the statements for Delphi consensus technique.(23,24) The Advisory Group was asked to silently reflect and write down ideas in response to the following question: “What do you think are important questions or concerns to address in order to improve your experience with managing urinary incontinence?” This question was narrower than the FG question in response to received FG data but remained broad to allow for a variety of responses. Each Advisory Group member was then asked to share one idea in a round-robin fashion until no more new ideas emerged. Each idea was recorded by the researcher. Further discussion and clarification followed to ensure that each idea was understood and documented correctly.
Focus group themes were then presented to the Advisory Group. Each theme was discussed to ensure that the perspective of the focus group participants was properly conveyed and revised accordingly. In collaboration with the Advisory Group, themes arising from the FG and NGT were then combined and developed into priorities for improving outcomes of UI management. This was done to ensure that the meaning of the themes was adequately translated into patient-centred language. New ideas were added to the list of questions and similar ideas were combined with the agreement of Advisory Group members. Researchers further revised the list of priorities to reflect proper grammar and edited them where ideas were repeated. Participants were then asked to anonymously rank the list of priorities by circling the top 15 questions/concerns that were most important to them and assigning points, from 1 to 15, to each of these in ascending order of importance. Researchers summed the rankings for each priority and presented the results to the Advisory Group during a third meeting. Each priority was discussed with the Advisory Group and revised, where needed, to ensure that proper meaning was conveyed and patient-oriented language was used.
The priorities identified as most important by the UI Advisory Group were entered into questionnaire format by the researchers, using Research Electronic Data Capture (REDCap) (Appendix A). The questionnaire collected demographical information, including email, first three digits of postal code, age, sex, and number of years experiencing UI. REDCap (Research Electronic Data Capture [REDCap], www.project-redcap.org) is a secure database that assigns each participant a record ID to maintain anonymity and allows participants to efficiently complete the questionnaire through a public or email link.(25) The questionnaire was presented to the Advisory Group for approval and amended if needed. Participants for the survey phase of the study were recruited via multiple channels, in consultation with the Advisory Group: poster campaigns in seniors’ activity centres, congregate living facilities, continence clinics and physiotherapy clinics across Canada, newsletters, emails, and websites/social media pages of major organizations, such as the Canadian Continence Foundation and Prostate Cancer Canada.
The survey was used to gather the opinion of a larger panel of experts on the topic, older adults experiencing UI. Questions asked participants to rate the importance of each research, educational, and advocacy priority for improving their experience of UI management on a 5-point Likert scale, ranging from 1 (‘very unimportant’) to 5 (‘very important’). Participants were also given the opportunity to provide a free-text comment to support their ranking for each priority. There are no strict guidelines regarding the cut-off criteria for Delphi consensus,(26) therefore, adhering to the principles of participatory research, consensus criteria were identified by the UI Advisory Group prior to releasing the questionnaire. Priorities rated 4–5 by at least 80% of participants met consensus criteria, advancing to the next round. The second round asked participants to re-rank the remaining priorities and provided, under each question, a summary of the free-text comments and the summed percentage of participants that ranked the priority as a 4 or 5 on the 5-point scale in the first survey. The results from this round were analyzed by the researchers and fed back to the UI Advisory Group.
Priorities rated between 4 and 5 by at least 80% of participants were retained, and those below 80% were discarded following both Delphi rounds. Free-text comments were summarized. The results were discussed with the Advisory Group via email consultation after each round to ensure that priorities they considered as most important were not excluded due to potential misunderstanding of the question.
In total, eight members (three male, five female) were recruited to the Advisory Group. The mean age of the participants was 73±8.2 and the number of years that they experienced urinary incontinence was 5.6±4.7 (Table 1). Two members were below the age of 65. Two female participants withdrew from the study after the first meeting, without providing a reason. Their input during the focus group was still considered in the development of the survey. One male participant was recruited following the focus group meeting and provided input during all subsequent phases.
TABLE 1 Characteristics of the UI Advisory Group (n=8)
Seven members (two male, five female) of the Advisory Group attended the focus group meeting. Through thematic analysis of the discussion, the researchers identified 43 themes.
Six members (three male, three female) of the advisory group attended the NGT meeting. Round robin, carried out until no more new ideas emerged, generated a total of 28 ideas. Discussing and clarifying the focus group themes and ideas from round robin produced a list of 38 priorities for ranking. Based on the ranking results and follow-up discussion, the Advisory Group chose to include 20 statements in the first public survey. The top-ranked priority for research and education was to identify the causes of UI, including other health issues/medications, surgical procedures, and lifestyle habits. Other highly ranked priorities were to explore natural remedies and herbal alternatives to UI medication; to examine the quality of assessment and treatment provided by general practitioners for UI; and to explore the forms of support most important to older adults when they first begin to experience UI.
A total of 59 participants (19 male, 40 female) responded to the first survey round. The mean age of the participants was 72.6±7.3 with an age range of 52–88 years old (Table 2). The number of years that participants experienced urinary incontinence ranged from 1 to 35, with a mean of 9.8±7.6. Responses were received from seven provinces, with most participants from Ontario and Alberta. A total of 15 priorities, with ≥80% agreement, were retained for the second round (Table 3). Women assigned higher ratings than men on 17 of 20 priorities. The response rate for the second round was 85% (50/59). A total of 11 priorities, with ≥80% agreement, were retained for the consensus of the UI Advisory Group (Table 4). The Group agreed to include all 11 priorities on the final list. The four highest rated priorities at the conclusion of the Delphi consensus process were the relationship between physical activity and UI; causes of UI; improving the quality of sleep of older adults with UI; and forms of support most important to older adults when they first begin to experience UI.
TABLE 2 Characteristics of participants completing the Delphi consensus survey (n=59)
TABLE 3 Participant ratings of priorities in the first survey round, listed in order of importance
TABLE 4 Participant ratings of priorities in the second survey round, listed in order of importance
Involving older adults through CBPR is a practical method by which to gain their perspective in formulating a research agenda tailored to address their concerns. This paper outlines the use of a CBPR framework in engaging older adults with UI in the design and analysis of research to set priorities for UI management that older adults feel are the most important to address. After selection of 20 priorities by the UI Advisory Group using FG technique and NGT, followed by two national Delphi consensus survey rounds, 11 research, educational, and advocacy priorities most important to older adults with UI were identified.
The higher ratings received from female participants on 17 of 20 topics can be explained by findings from another study, which reported that men experience more difficulty in accepting UI due to its stronger association with females.(18) This internalized denial may have limited the male participants’ perception of each topic’s importance.
The most highly rated topic for the Advisory Group was to investigate the causes of UI. This topic also appeared among the four highest ranking topics at the conclusion of the Delphi consensus process. Such cohesion shows that the UI Advisory Group was representative of the larger sample of older adults with UI in Canada, and also reflects a continued lack of public awareness, as multiple studies describing underlying causes of UI already exist.(27,28) Much research has also been conducted into treatment and management strategies for UI.(29–31) Despite the availability of such research, four of the final 11 priorities reflected a lack of knowledge about available treatment and management strategies. This suggests that information may not be conveyed through a medium that is accessible to older adults or, perhaps, that information which is available is not in a health literate format. A study that explored women’s preferred methods of obtaining information about containment products found that receiving information from health-care providers was preferred to traditional media.(32) This opinion was consistent with that of the Advisory Group.
The finding that older adults rated the ‘relationship between physical activity and UI’ and ‘improving quality of sleep’ as two of the four most important priorities falls in line with a previous study which concluded that a major goal for women seeking to surgically improve their urinary continence was to reduce the impact of UI on lifestyle factors.(33) Another highly rated priority was ‘forms of support most important to older adults when they first begin to experience UI’. The Advisory Group expressed feeling alone, distressed and underinformed at the onset of their symptoms. This is a common experience and suggests that current health-care programs should adopt a more proactive approach to improve health outcomes.(34)
Overall, the top 11 priorities identified by older adults reflected a concern for the impact of UI on lifestyle, a need to increase support for those with UI, and a gap in understanding of the condition and the available treatment/management.
Like most studies, ours has limitations. Individuals experiencing stigma regarding UI are less likely to participate in an open discussion about UI, perhaps biasing against participation. We addressed this by including a Delphi consultation through an anonymous online survey where people with UI could voice their opinions without any discomfort or stigma. Although the Advisory Group members shared their interpretation of each statement by discussion, Delphi survey participants did not have the opportunity to clarify their interpretation of each statement prior to ranking. To mitigate this, we offered the opportunity to provide free-text comments within the survey and analyzed such comments for misunderstanding in collaboration with the Advisory Group. Although the UI Advisory Group assisted in phrasing the questions using patient-centred language, communicating with the researchers may have biased members towards selecting language that other community dwelling older adults may misunderstand. Guidelines on sample size and response rates for Delphi consensus are quite broad; studies that involve both a lower and a higher number of total participants than this study exist.(35,36)
Another potential limitation was sampling bias, as the consensus phase was conducted largely through email.(37) This was mitigated by mailing the survey to those who expressed interest in participating but did not have email access. Lastly, the provinces were not equally sampled, with Alberta and Ontario numbers exceeding that of other provinces. There was a lack of response from six provinces/territories. This bias reflects increased opportunity to recruit in-province participants and Ontario’s extensive senior programming, which provided more venues for recruitment.
Although this study was expected to identify new research priorities important to improving the experience of older adults with managing UI, results showed that the most prominent questions and concerns had already been answered through previous research. The primary identified gap is in translation and mobilization of knowledge and accessibility to research findings by people with UI. In response, we aim to make research evidence accessible and comprehensible to older adults through educational programs and materials, as well as to address the priorities identified through research and community engagement initiatives. More qualitative research must be conducted to gain the perspective of older adults with UI in developing approaches to facilitate their understanding of their condition and to support them with the appropriate sources of information about products, services, and management strategies.
We thank Riitta Berry, Shirley Georgas, Sambhu Nath, Jarek Wloskowicz, and other members of the UI Advisory Group for their contributions.
We have read and understood the Canadian Geriatrics Journal’s policy on conflicts of interest disclosure and declare there are none.
We acknowledge receipt of funding from the Muhlenfeld Family Fund.
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*An abstract of this research was included in the abstract book of the Annual Scientific Meeting of the Canadian Geriatrics Society, 2020. https://thecanadiangeriatricssociety.wildapricot.org/resources/Documents/2020%20ASM/CGS%20Book%20of%20Abstracts%202020.pdf
Correspondence to: Adrian Wagg, mbbs, Department of Medicine, 1–198 Clinical Sciences Building, University of Alberta, 11350 – 83 Avenue, Edmonton, AB T6G 2P4, E-mail: adrian.wagg@ualberta.ca
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This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial No-Derivative license (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits unrestricted non-commercial use and distribution, provided the original work is properly cited.
Canadian Geriatrics Journal, Vol. 27, No. 4, DECEMBER 2024