Hypothesis / aims of study
Urinary incontinence (UI) is an important medical condition affecting as many as 55% of women living in the community. Adding to the physical discomfort of urine leakage, UI can have detrimental impacts on overall quality of life, namely impacting daily activities, social participation, physical activity, functional independence and threatening a healthy self-identity .
The internalization of prejudicial attitudes (self-stigma) towards UI can negatively impact self-perceptions as well as help-seeking of women living with this condition . Few studies have explored the potential benefits of Pelvic Floor Muscle (PFM) training program with respects to the women’s experiences, self-perceptions and how they perceive self-management of UI after this intervention. .
This study aims to better understand the lived experience of women who completed a PFM training program with a focus on how peer support affect self-perceptions and self-management of UI throughout a PFM training program and how this relates to their quality of life. To our knowledge, this is the first study that explores the mechanisms of change in self-perceptions and self-management in relation to peer support within a PFM training program. A better understanding of these mechanisms from the perspective of the individual with UI can inform and maximize the health benefits of PFM training programs.
Study design, materials and methods
Qualitative research allows to draw descriptive accounts of lived experience and knowledge. Hence, 17 semi-structured qualitative individual interviews were conducted with a sub-sample of participants of a non-inferiority RCT comparing two PFM training programs for UI.
To participate in the study, women had to be aged 60 years or more, report symptoms of stress or mixed UI, have completed the 12-week PFM training program and provide informed consent to participate in an individual face-to-face interview. Women were excluded from the study if they presented cognitive or communication difficulties that would hinder the interviewing process.
The PFM training program consisted of 12 weekly 60-minute sessions provided by an experienced physiotherapist. Sessions consisted of 10 minutes of psychoeducation, 30 minutes of PFM training in static positions (lying, sitting, four-point kneeing and standing) and 20 minutes of dynamic PFM training. The program also included an at-home PFM training program to be completed 5 days a week. The PFM training program included both an individualized (physiotherapist only) and a group-based condition (physiotherapist and a group of women with UI). The presented data includes both program conditions, discussing them separately and as a whole.
A trained interviewer with knowledge of UI conducted the interviews from June 2016 to August 2017, meeting participants at the training location following their program completion. The semi-structured interviews included open-ended questions about perceived changes as a result of their participation in the program. All participants were questioned about the format of presentation to gain an understanding of experiences in group or individual condition training. Interviews were audio-recorded and transcribed verbatim. Interview transcripts were analyzed using content analysis . Three experienced coders including the interviewer individually coded and then together discussed transcripts one by one. They then met to analyze latent themes emerging from the interview corpus.
Interview participants were aged 60 to 78 (M=67.7 5.45 years) and had been living with stress or mixed UI for between 1 and 36 years (M=10.2 11.35 years). Of these, 8 women were in the group-based program, the other 7 women were in the individualized program.
Our analyses of interviews revealed that women having completed the PFM training program described peer support as that provided by other women living with the condition, but also family members (sisters/life partners) and professionals (physiotherapist/research team). Thus, in this study peer support is defined as support provided by any of these three sources. Furthermore, our analyses uncovered four inter-related themes that describe how peer support influences self-perceptions and self-management of a sample of older women who have completed individualized or group-based PFM training programs. These four themes were: 1) Point of entry; 2) Safe space; 3) From concealing to disclosing and 4) Change in perspective.
Interpretation of results
1) Point of Entry: This theme describes the extent to which peer and professional support influenced self-perceptions and self-management of UI was dependent on each participant’s starting point. Point of entry represented participants’ unique characteristics and manifestations of UI. This included but was not limited to perceived cause of UI, perceived severity of UI, fluctuations in symptomology, rate of progression, as well as secondary health conditions presently being managed. Point of entry was also reflected by participants’ state of mind, emotions and beliefs concerning UI management.
2) Safe space: In this theme, participants described their social interactions that occurred within the context of the training program RCT as being protected from potentially stigmatizing attitudes from others. The safe space was characterized as an environment where there were fewer and less intense threats from others in their social environment. Feeling safe, secure, self-assured and protected came about primarily because of the UI knowledge of others present. Participants in both the individualized and the group-based conditions suggested that the professional knowledge of the physiotherapist contributed to creating a protected space. For participants in the group-based condition the experiential knowledge of UI of the other participants also contributed. In both conditions, the complete absence of others who have little or no knowledge of UI and are therefore more likely to judge was beneficial in creating a safe space.
3) Conceal to disclose: This theme represents a shift in participant attitudes as well as behavior from concealing UI from others to being ready to disclose to others during the PFM training. This change was attributed to interacting with knowledgeable others, as well as implementing coping strategies learned in the training program. Over time, participants became more open to disclosing information about their condition to others.
4) Change in perspective: This theme represented participant shift toward: A) a more positive self-image; and B) perceived control of their UI in social settings. Through their involvement in the training program, participants learned about UI and its management, and became more willing to acknowledge to others information about their health status.