TY - JOUR
T1 - Believing women
T2 - a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network
AU - Brown, Victoria L.
AU - James, Aimee
AU - Hunleth, Jean
AU - Bradley, Catherine S.
AU - Farrar, John T.
AU - Gupta, Priyanka
AU - Lai, H. Henry
AU - Lowder, Jerry L.
AU - Moldwin, Robert
AU - Rodriguez, Larissa V.
AU - Yang, Claire C.
AU - Sutcliffe, Siobhan
N1 - Publisher Copyright:
© 2023, The International Urogynecological Association.
PY - 2024/1
Y1 - 2024/1
N2 - Introduction and hypothesis: Although allusions to the importance of a good physician–patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients’ perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients’ perception of clinical encounters. Methods: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician–patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters. Results: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients’ health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; “testing” physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine. Conclusions: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician–patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.
AB - Introduction and hypothesis: Although allusions to the importance of a good physician–patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients’ perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients’ perception of clinical encounters. Methods: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician–patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters. Results: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients’ health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; “testing” physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine. Conclusions: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician–patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.
KW - Chronic pain
KW - Delayed diagnosis
KW - Interstitial cystitis
KW - Patient–provider encounter
KW - Qualitative
KW - Women
UR - http://www.scopus.com/inward/record.url?scp=85177459366&partnerID=8YFLogxK
U2 - 10.1007/s00192-023-05677-0
DO - 10.1007/s00192-023-05677-0
M3 - Article
C2 - 37991567
AN - SCOPUS:85177459366
SN - 0937-3462
VL - 35
SP - 139
EP - 148
JO - International Urogynecology Journal
JF - International Urogynecology Journal
IS - 1
ER -