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

Abstract

ImportanceWomen with interstitial cystitis/bladder pain syndrome (ICBPS) face challenging treatment and feelings of isolation. Centering models of group medical visits have been successful in other spheres but have not been explored in ICBPS therapy.ObjectiveWe sought to describe opinions of women with ICBPS regarding Centering visits, including advantages, experience, and barriers to participation and efficacy.Study DesignPatients who attended Centering visits participated in a focus group and/or filled out written commentary in evaluations, and control patients were individually interviewed. We coded transcripts using NVivo software for emergent themes.ResultsWe conducted 4 control patient individual interviews, had one focus group of Centering patients, and collected comments from 34 post-Centering surveys. Emergent themes of interest included motivations and barriers to joining, cost, leadership, connecting with others, diversity, learning, alternative treatments, and areas for improvement. Regardless of participation in Centering, patients noted the importance of self-care and sharing with other women with ICBPS, and they emphasized feelings of isolation in their disease and discouraging health care experiences. Women in Centering noted that the biggest advantages of Centering were learning from other women with ICBPS, the creation of a welcoming and safe space, and the feeling that Centering was more of a support group than a medical visit. Women noted that barriers to Centering included cost and logistical issues, such as time and format.ConclusionsWomen with ICBPS treatment note that Centering group visits provide a sense of learning and community that opens them to a wider variety of options.

Centering Group Treatment for Women With Interstitial Cystitis/Bladder Pain Syndrome: A Prospective, Parallel-Group Cohort Study

“…It is also possible, as noted in our qualitative work, that a great deal of learning about management strategies and self-efficacy takes place in Centering, that patients in Centering pick up more tools to self-manage their ICBPS than other patients. 41 A randomized controlled trial found mindfulness-based stress reduction to be beneficial adjuvant therapy for patients undergoing treatment for ICBPS, further supporting the findings of the current study. 14 This is one of the first studies in ICBPS we are aware of that diligently measures monthly symptoms for up to 12 months.…”

“…This could explain the initial benefits reflected in pain scores among women engaging in Centering therapy because Centering mediated care beyond medical therapy alone by introducing patients to various modes of alternative treatment. It is also possible, as noted in our qualitative work, that a great deal of learning about management strategies and self-efficacy takes place in Centering, that patients in Centering pick up more tools to self-manage their ICBPS than other patients 41 . A randomized controlled trial found mindfulness-based stress reduction to be beneficial adjuvant therapy for patients undergoing treatment for ICBPS, further supporting the findings of the current study 14 …”

“…It provides a platform for individuals to exchange ideas under the guidance of a facilitator and meets the ongoing needs of ICBPS patients to address the psychosocial aspects of the disease, including isolation and dismissal by the medical community 3 . We have published prior qualitative work from this cohort that indicated that women found Centering to be “like a support group” and “a place to share and be heard” as opposed to a medical visit, which would explain why they find it more enticing than and fundamentally different from typical medical care 41 . In other words, not only is Centering a platform for patients to exchange ideas about and benefit from CAM that has benefitted others, but it is also viewed as CAM in and of itself.…”

“…3 We have published prior qualitative work from this cohort that indicated that women found Centering to be "like a support group" and "a place to share and be heard" as opposed to a medical visit, which would explain why they find it more enticing than and fundamentally different from typical medical care. 41 In other words, not only is Centering a platform for patients to exchange ideas about and benefit from CAM that has benefitted others, but it is also viewed as CAM in and of itself. It is worth noting that this investigation and the structure of Centering it represents consider Centering as a "complementary" treatment, not a replacement for or a displacement of traditional care, as both groups received traditional care that was ongoing and evolving while they participated or did not participate in Centering.…”