- Throughout this blog, phrases written in quotation marks and in italic font denote direct quotes from the scientific literature. "Pelvic health" in this blog I will refer mainly to pelvic floor dysfunction. If you have any concerns about the way this blog has been written, please do not hesitate to contact us on hello@umi-health.com
In pledging to make pelvic health accessible to every woman, everywhere, we at Umi must acknowledge the very real racial disparities influencing all important factors affecting women’s experience of, and the treatment for, pelvic floor dysfunction (PFD).
Although previous research suggests that “white women” may be at increased risk of stress urinary incontinence, [1] and that e.g. “African-American race” may be a protective factor against objectively measured prolapse, [2] there is not only insufficient high-quality evidence to draw conclusions with respect to the impact of racial differences, as well as true prevalence of pelvic floor disorders, but also, there lack sufficiently proven reasons as to why disparities exist, leaving researchers and clinicians speculating (which, in itself, is a dangerous thing).
Not unlike other research topics, there is a paucity of literature demonstrating cultural and ethnic diversity in study groups, as well as detailed sub-analyses of data referencing differences in culture and race amongst study participants.
For example, the question as to why women with PFD seek, or, do not seek help for their symptoms has been unclear, but is likely multi-factorial. American data suggests that “non-white women are significantly more likely to lack knowledge” about risk factors, preventative strategies and curative treatment options for PFD, but there has been no investigation into why that might be. The same data suggests “non-white women are also more likely to assume that surgery is the only treatment option for both urinary incontinence and pelvic organ prolapse - a misbelief that may increase patients’ apprehension about care-seeking and the perceived risk incurred”– [3] but why that is, we are left guessing.
In terms of general health, it is accepted that personality and culture have a significant impact on our ability to cope with symptoms and to seek help, and, that further, “lack of knowledge” is a barrier to seeking help for any health-related problem. Social taboo and the role of women in society also influences the coping behaviours of women and it has been suggested that women may develop masking and containment strategies in order to avoid aspects of social interaction to ensure their PFD problems remain secret. [4] But, in the context of pelvic health in the U.K., for example, there is little - if any - research investigating the impact of these behavioural factors on PFD symptom experience, and progression, in the context of culture and race.
"Lack of knowledge..." - what does this mean?
As they stand, these findings are not comfortable to read. In fact, referring to a “lack of knowledge” may be somewhat offensive to many. The lack of subcategorisation of ethnicity and race within intervention studies that control for race is striking. In fact, the gross reality of the situation is that, in general, women’s and pelvic health is massively under-researched and that the question “why is that?” is not asked enough when unearthing uncomfortable truths.
Finally, although many of the evidence-based risks associated with developing PFD can be, in part, attributed to the individual woman – whether they be intrinsic, extrinsic, modifiable or not – we cannot ignore the likely negative impact that racial discrimination will have on both health-seeking behaviour, and treatment outcomes. Extrapolating what we know about both the risk of death and comorbidity in Black vs. White pregnant mothers, [5] and racial disparities in Covid-19 infection and morbidity, [6] it is vital that we do all we can to physically break down the barriers that both stunt our understanding of the experience of black and ethnic minority groups, and prevent certain female populations from getting the help they need and deserve.
So, what now?
What we do not understand, we cannot change, and so understand we must in order to make our mission a reality. Umi is not simply a platform from which educational content is created and delivered, rather (amongst our other aims) we want to push the research agenda within the sphere of women’s and pelvic health to serve the needs of our community. We fully appreciate the necessity for targeted, culturally-sensitive educational interventions, and hope to work to deliver these by collaborating with key stakeholder groups within diverse female communities. This is the only way to truly secure success in reducing the personal and economic burden of PFD, whilst mitigating the negative effects on women's quality of life, regardless of culture or race. [3]
Can you help us?
If you yourself can help us in reaching a diverse range of cultures and communities; if you know anyone who is working to make content like ours accessible to the women who often get forgotten or overlooked by mainstream services, or if you have ideas about increasing the accessibility of Umi beyond its current format, we would love to hear from you.
Please contact us at hello@umi-health.com
Written by Amal – Co-founder and Director at Umi Health
Next-up on the blog expect discussion on topics such as the racial disparities in the experience of menstrual health, and the female gender - in all its guises - applied to pelvic health.
References
1. Kim, S., Harvey, M.A. and Johnston, S., 2005. A review of the epidemiology and pathophysiology of pelvic floor dysfunction: do racial differences matter? Journal of Obstetrics and Gynaecology Canada, 27(3), pp.251-259.
2. Whitcomb, E.L., Rortveit, G., Brown, J.S., Creasman, J.M., Thom, D.H., Van Den Eeden, S.K. and Subak, L.L., 2009. Racial differences in pelvic organ prolapse. Obstetrics and gynecology, 114(6), p.1271.
3. Mandimika, C.L., William, M.U.R.K., Mcpencow, A.M., AeuMuro, L.A.K.E., Miller, D., Connell, K.A. and Guess, M.K., 2015. Racial disparities in knowledge of pelvic floor disorders among community-dwelling women. Female pelvic medicine & reconstructive surgery, 21(5), p.287.
4. Theresa, P., 2010. Coping and help seeking behaviour in women with Pelvic Floor Dysfunction: the emic perspective (Doctoral dissertation, City University London)