Hypothesis / aims of study
Older adults, those most affected by UI, are often under-represented in research. The patient perspective in incontinence research is lacking. Most existing studies are quantitative in nature; existing qualitative studies are mostly driven by researchers and may not take the needs and views of people with UI into consideration. Traditionally, research studies involve older adults as subjects or participants, rather than partners in co-creation of scholarly output which meets their needs. 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. Specifically, here we aimed to understand the perspective of older adults in formulating a research agenda, tailored to address questions posed by them in order to improve their experience and improve outcomes from management of UI that were most important to them.
Study design, materials and methods
Using a mixed methods approach a patients focus group (FG) was facilitated to establish UI “problems”, Nominal Group Technique (NGT) was employed to achieve within-group data saturation. Group themes were developed into a questionnaire used to survey a larger sample of older adults with UI using a Delphi consensus method. Since this study took a CBPR approach, participants, instead of researchers, were encouraged to generate a list of questions requiring addressing to improve management of UI. A further FG and the NGT were employed to facilitate this process.
Community dwelling and English-speaking older adults with UI were recruited. This core Patient Advisory Group worked with the researchers to plan, inform and design other stages of the research. Participants were recruited via seniors’ activity centres, men’s sheds, continence clinics, continence physiotherapy clinics, newsletter ads, previously conducted studies, and participants’ social connections.
During the first meeting, the Advisory Group was reminded of its role as co-researcher, rather than participant. The group also received training on ethical conduct in research and participated in a FG discussion.
Focus group activities
The initial FG identified problems participants faced in managing UI in day-to-day lives. FG data were transcribed and thematically analyzed by the researchers. FG themes were fed back to achieve within-group saturation of themes. Group members were asked to silently reflect and write down ideas about important questions or concerns to address to improve their experience with managing UI. Each group member was then asked to share one idea in a round-robin until no more new ideas emerged. Each idea was recorded by the researchers. Further discussion and clarification followed to ensure that each idea was understood and documented correctly.
Focus group themes from the initial meeting were then presented back to the Advisory Group. Each theme was discussed to ensure that the perspective was properly conveyed and revised accordingly. Themes and ideas were combined and developed into priorities for improving outcomes of UI management. Participants were then asked to rank the list.
Twenty priorities identified as most important were entered into questionnaire format using Research Electronic Data Capture (REDCap), a secure database, along with demographic information, including email, age, sex and years experiencing UI. The questionnaire was presented to the advisory group for approval and consensus criteria for the Delphi method were established. Delphi participants were recruited via posters, adverts and online. The survey asked a larger panel of older adults experiencing UI and to rate the importance of each priority for improving their experience of UI management on a 5-point Likert scale, Participants could provide free-text comments to support their ranking. Priorities considered less important were discarded. The second round asked participants to re-rank remaining priorities, provided a summary of free-text comments and first round scores. Results were analyzed by the researchers and fed back to the advisory group.
Priorities rated 4 - 5 by at least 80% of participants were retained, others were discarded. Results were fed back to the advisory group after each round to ensure that priorities were not excluded due to potential misunderstanding.
In total, eight members (3 male, 5 female) were recruited to the advisory group. Of these, 3 were recruited through seniors’ activity centres, 2 through previous studies, one through a continence clinic, one through a physiotherapy clinic, and one through the social connections of another participant. The mean (SD) age of the participants was 73 (8.2) and the mean (SD) number of years that they experienced UI was 5.6 (4.7) Two female participants withdrew from the study after the first meeting;their input was still considered in the development of the survey. One additional male participant was recruited following the focus group meeting. Following thematic analysis of the FG discussion, 43 themes were identified.
Six members (3 male, 3 female) of the advisory group attended the NGT meeting. The round robin generated 28 further ideas. Discussing and clarifying the focus group themes and ideas resulted in 38 priorities for ranking. Based on the ranking results and follow-up discussion, the advisory group included 20 ranked priorities. Three which ranked highest during NGT were excluded; and three which did not make top 20 during NGT were included following discussion of the ranking results.
A total of 59 participants (19 male, 40 female) responded to the first survey round. The mean (SD) age of the participants was 72.6 (7.3), range 52-88. The number of years that participants experienced UI ranged from 1-35 with a mean (SD) of 9.8 (7.6). 15 priorities were retained for the second round. Women assigned higher ratings than men on 17/ 20 priorities. The response rate for the second round was 85% (50/59). 11 priorities were retained (Table).
Interpretation of results
Involving older adults through CBPR is a practical although time consuming method to gain older adult’s perspectives in formulating a research agenda tailored to address their concerns. Through ranking and discussion, the advisory group selected 20 research, educational and outreach priorities regarding UI management. Following two Delphi rounds, 11 priorities considered most important to older adults with UI were identified. The most highly rated topic was to investigate the causes of UI. This also appeared among the four highest ranking priorities in the Delphi consensus. Such cohesion suggests that the UI Advisory Group was representative of the larger sample of older adults with UI in Canada. More importantly, many of the identified priorities reflect a gap between research knowledge and public awareness and highlight the ongoing need for public education in this area. Despite the availability of such research, four of the final 11 priorities reflected this lack of knowledge. Thus, information appears not to be reaching its intended audience or conveyed through a medium accessible to older adults.
Overall, the top 11 priorities identified by older adults reflected concerns about 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.