Centering Group Treatment for Women With Interstitial Cystitis/Bladder Pain Syndrome: A Qualitative Analysis.

Forty-five participants (25 controls and 20 Centering patients) participated in the larger study ( Table 1 ). Eleven patients contributed 34 open-ended survey responses, 5 Centering patients participated in the focus group, and 5 control patients participants in interviews. In this article, we focus on codes of motivations for and barriers to joining centering, cost, leadership, connecting with others, diversity, learning, alternative treatments, and areas for improvement ( Table 2 ) and describe common ground and contrast between Centering and control participant commentary ( Table 3 ). Participants had various motivations for joining Centering. Many wanted to build connections with others who had ICBPS, and many saw it as a way of learning how to manage their ICBPS through tips from others. Patients also liked that Centering was not a traditional medical treatment, and appreciated its flexibility, where they could explore if they liked it and quit if they did not. Participants expressed that most barriers to joining Centering were logistical, such as not being able to make the meeting time, use Zoom, or attend in person. Some mentioned that notions about Centering, such as the belief that it was similar to a “support group,” were a barrier due to the stigma of grief and negativity around that term. Some patients noted that participation may not appeal to women with certain personality traits, such as introversion. Participants in the focus group on Centering overwhelmingly disagreed with having to pay for Centering and believed that it kept women who could benefit from joining. Some said they did not think it should cost money because they saw it as a support group, or noted that Centering differed from a medical visit, which made payment seem nonsensical. They thought people should only pay for medical advice from a health care provider and not support from peers. Participants discussed that the group leader was beneficial to their Centering experience in that she had a calming presence, was able to unite people, and provided guidance for important aspects of the Centering group (eg, meditation). Others noted her ability to “meet people where they are” and her positivity, which fostered a sense of optimism in the group, were critical. Participants did not feel that the Centering leader was akin to a health care provider. While they saw health care providers as somewhat interchangeable or uniform in what they offer, they viewed the Centering facilitator as being unique and irreplaceable. Most participants noted that connecting with others with ICBPS was a huge benefit to Centering. Some women mentioned that Centering helped them learn to better manage their own ICBPS by hearing what worked for others. Others said it helped them feel less alone and provided a sense of support through the group, and some mentioned a sense of comradery and empowerment that the group provided for them. This sharing helped them open themselves to other support systems, such as friends, family members, or medical professionals. Participants mentioned they thought having diversity within the Centering group was beneficial, particularly regarding age. Diversity, in their view, engendered a sense of comfort, lack of judgment, and a belief that ICBPS could affect anybody of any background. Many women noted that learning was a major benefit to Centering. They mentioned coping mechanisms of mindfulness and meditation as especially helpful. For example, women said that learning from others validated that alternative therapies were effective and encouraged their use. Many emphasized that Centering provided a space to learn about how to manage their ICBPS from their peers, and women viewed their peers as valuable sources of information. Participants who attended Centering had various suggestions about how to improve Centering or make it more accessible. A couple mentioned that while they enjoyed the diversity that existed in the Centering group currently, they would have liked even more, and that a larger number of participants would increase diversity and minimize a sense of isolation. Some Centering participants argued that although the convenience of doing Centering over Zoom was a positive aspect, meeting in person would have added more depth to their interactions and allowed them to connect socially with their peers. The Centering and control groups had interesting differences and similarities related to experiences with health care, the impact of their ICBPS, and feeling alone ( Table 3 ). Both groups noted the loneliness of ICBPS, and Centering participants mentioned that group visits helped their sense of loneliness. Centering participants’ comments were more positively oriented, focusing on how the group improved their symptoms. Conversely, control participants focused more on the negative impact of ICBPS on their everyday lives, such as how symptoms made them feel they could not go out and live their lives in a normal way. Both groups mentioned that schedules, preferences for format, cost, and personality affected the ability to participate in Centering, and groups both espoused the advantages of flexibility and options in scheduling and format. Both control and Centering participants mentioned that a more open or extroverted personality would allow someone to be more interested in Centering and get more out of the sessions. Centering and control participants also both discussed their difficulties with health care in treating their ICBPS. For example, both groups noted issues such as misdiagnosis, having to see multiple health care providers to get appropriate treatment, having multiple medications attempted, and the lack of integration of alternative medication or self-efficacy behavior. While they talked of respect for their treating physicians, they cited a sense of trust and connection with others with ICBPS that made them more comfortable than in the medical space with a health care provider.

This prospective cohort study recruited adult women with more than or equal to 6 months of urological pain accompanied by bothersome urinary symptoms who were seeking or undergoing treatment for ICBPS; it was approved by our institutional review board (#20–109). We excluded women who had procedures or major trauma in the abdomen, pelvis, or upper lower limb(s) within the previous 2 weeks that required narcotic pain medication; were unable to consent to and comply with research protocols because of mental illness or disability; were unable to access or comply with research protocols because of logistical barriers not related to autonomous patient choice; or could not speak or read English. Eligible women electing to participate in Centering attended monthly sessions lasting 2–3 hours in a group of 6–10 women. Two early sessions were held in person and then over a secure audiovisual platform (Zoom) during the COVID-19 pandemic. For in-person sessions, women had vital signs taken, spent 10–15 minutes individually with the health care provider, and then spent the remainder of the session in conference with their peers and a certified nurse midwife group facilitator, usually with a guest expert speaker, regarding relevant self-care topics in ICBPS. Topics covered by guest speakers included what is known about chronic pain in the setting of ICBPS; how stress relief can aid in therapy; over-the-counter medication useful in therapy; the use of laughter/humor as medicine; strategies and resources for building a support network; and how to integrate meditation practice into care for ICBPS. Virtual sessions opened with a meditation and then a discussion on a focused topic, and the remainder of the session was discussion about the topic or lessons about self-care. Participants were asked to complete surveys in REDCap 18 after each Centering session they attended, which included open-ended questions about what they found helpful and what they would change. We conducted a Zoom focus group in August 2021 with Centering patients to learn about what was appealing about the model, what they found valuable about their experience, and what they would change. Using purposive sampling, the investigators reached out by telephone to all Centering participants who participated in 3 or more Centering sessions to inquire about interest, with the goal of having 5–8 women in the focus group. The discussion, which lasted approximately 2 hours, was cofacilitated by 2 members of the research team who were unaffiliated with the medical clinic and did not know the patients. We invited control participants to participate in one-on-one, audio-recorded Zoom interviews about their perspectives and reasoning for not participating in Centering; what barriers existed to being a part of the group; what, if anything, appealed to them about Centering; and their experiences getting care for their ICBPS. Again, we used purposive sampling, with the intention to interview 4–6 patients. We conducted interviews in August 2021, and interviews each lasted approximately 15–30 minutes. A member of the research team who was unaffiliated with the medical clinic and did not know the patients conducted the interviews. The focus group and individual interviews were audio recorded and professionally transcribed. We used a qualitative approach that was team-based, systematic, iterative, and thematic. We exported open-ended survey responses from REDCap and into NVivo 19 qualitative research software (QSR International) along with interview and focus group transcripts for analysis. Members of the research team (M. M., H.R.B., K.M.) independently reviewed survey responses and transcripts. The primary analyst (M.M.) created a preliminary code book, coded, and identified emergent themes. Throughout this process, she met frequently with the senior analyst (H.R.B.) and periodically with the primary investigator (K.M.) for guidance and input. Once initial coding was complete, the qualitative team met to discuss codes and themes and identified areas to summarize.

This qualitative analysis of commentary from patients attending ICBPS Centering group visits and those treating their ICBPS without this modality found a variety of interesting advantages and barriers to ICBPS Centering therapy. Most notably, women with ICBPS who attended Centering espoused that learning from one another and having a safe, supportive community within the group were key advantages, and opened their minds to novel and alternative treatments, such as meditation or self-care tips. Both Centering and control patients noted concern about barriers to Centering therapy such as billing for the visit, timing of visits, and issues with diversity of participants. There is limited prior work regarding patient viewpoints in ICBPS care, and this qualitative design allowed us to hear patient narratives about Centering in their own words. Qualitative work on pelvic floor diseases, such as fecal incontinence 20 , 21 and endometriosis, 22 , 23 have demonstrated that women with these sensitive issues have unexpressed emotions, motivations, and needs regarding their care. Women with ICBPS also reveal more when asked open-ended questions; recent qualitative work has illuminated that women with ICBPS want more of a self-directed treatment plan that avoids medication and surgery. 24 Because quantitative outcomes may miss this type of vital information, qualitative data collection should be central in considering therapies. Another important aspect of the qualitative work is the ability to not only validate patient experience with the disease and interventions but also take measures to improve interventions with this timely collection of patient-centered data. For example, the qualitative study illuminated for investigators and clinicians that billing for the Centering visits was something that not only upset patients but might be a barrier to entry or diversity of the group. We were able to take measures to correct this with medical group leadership, armed with these data directly from patients. We also were enlightened on the fact that patients view Centering as more of a support group than a medical intervention and the group facilitator as more of a facilitator than a medical provider. That aided us in updating the framework through which we, the clinicians administering Centering, viewed this intervention. Timely collection of patient perspectives is invaluable and allows us to make changes to our perspective or to our methods in real time. If considering ICBPS interventions that are novel, we would highly advise patient-centered approaches before or in addition to quantitative study. It is worth noting that although there are some self-evident differences in the outlook of Centering and control patients toward Centering, there was a great deal of unity among patients with ICBPS regarding the possible advantages of this treatment mode, even among those that did not feel it was for them. Both control and Centering patients noted that standard medicine has limitations in addressing ICBPS, notably difficulties in diagnosis, confusion of health care providers about the best way to treat, and difficulty accessing the right health care provider. Both groups of patients also noted that they are open to options that are self-efficacious, such as complementary and alternative medicine, meditation, and dietary changes, something that upholds prior work indicating that women with ICBPS want nontraditional treatments 6 , 9 and structured treatment regimens that involve self-care practices. 24 In addition, both Centering and non-Centering participants noted how much isolation and loneliness are felt in the experience of ICBPS. 3 , 25 Patients have expressed in prior studies that loneliness and isolation are part of ICBPS, and patients with ICBPS want their health care providers to aid them with the psychosocial fallout of ICBPS. 3 Centering participants specifically noted how the support and sense of community they felt in Centering alleviated this, indicating that Centering is the first treatment with evidence supporting that is specifically addressing this aspect of the disease. Based on literature indicating that cognitive behavioral therapy may be beneficial for women with chronic pelvic pain (CPP) 26 , 27 and the data from the present study indicating that loneliness and isolation are relieved by a group setting, our subspecialty clinics have also recently instituted psychiatrist-led cognitive behavioral therapy groups that serve women with CPP, and many of our patients with ICBPS plan to take part in this treatment strategy as well. Increasing the availability of group-based interventions that address the psychosocial aspects of ICBPS has been a natural result of the data from this study and others that highlight that women with ICBPS want these options in addition to other biomedical interventions. Advantages of this qualitative study include the rigorous qualitative methods and different formats of qualitative data collection, including surveys with written comments, focus group discussion, and individual interviews, allowing participants to express their views in a way in which they felt comfortable. Because there is limited qualitative insight on ICBPS treatment, this work provides novel information on care models from the patient viewpoint. Limitations of this analysis include nonrandom sampling of the Centering and non-Centering participants, which could have led to participants with more extreme views coming forward to offer qualitative information or lack important viewpoints from those that did not want to share in this format. In addition, because the onset of the Centering visits, and this qualitative investigation, was around the time of the onset of the COVID-19 pandemic, women in the Centering groups only attended 2 in-person sessions before being moved to a virtual platform for safety purposes, so this circumstance certainly could have compromised the way Centering was perceived by either patients in Centering or the control patients that were interviewed about their reasons for not attending Centering. This qualitative study identified several important barriers to Centering success in patients with ICBPS, such as cost, time and scheduling limitations, and personality preferences, but patients in Centering noted that Centering offered advantages such as increasing their knowledge, social support, and willingness to engage in helpful behavior. Centering patients suggested that a positive group leader, diversity within the group, and a space of trust would aid in Centering success. Centers that care for women with ICBPS should consider strategies to offer Centering while minimizing barriers such as cost or difficulty of matriculation.