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DIVERSITY Breaking Barriers via Focus Group Analysis: Enhancing Care for Minority Women With Pelvic Floor Disorders
By: Greeshma Venigalla, BS, University of Miami Miller School of Medicine, Florida; Sanjana Satish, BA, University of Miami Miller School of Medicine, Florida; Manish Narasimman, BA, University of Miami Miller School of Medicine, Florida; Raveen Syan, MD, FPMRS, University of Miami Miller School of Medicine, Florida | Posted on: 19 Apr 2024
Pelvic floor disorders (PFDs) pose unique challenges for women seeking care, and these challenges are even more pronounced for minority women.1 Barriers to effective health care encompass several factors, including awareness, socioeconomic parameters, and patient-provider relationships.
Inadequate knowledge about PFDs stands out as a significant obstacle for women receiving care. Many women may lack awareness of PFDs, leading to delayed diagnosis and treatment.2 Even if aware, many women experience feelings of embarrassment or shame associated with their symptoms perpetuated by societal expectations.3 Social determinants of health (SDOH), including socioeconomic status, race, and language barriers, cast a heavy burden as well. Minority women with PFDs may find it challenging to access necessary care due to financial constraints, transportation limitations, and linguistic barriers, all of which are impacted by racial inequity.4 Moreover, language and cultural differences can lead to misunderstandings and miscommunications, affecting the quality of care received and significantly impacting access to care. Logistical issues such as transportation costs pose additional challenges, particularly in low-resource settings. These barriers contribute to delayed diagnosis and treatment, if received at all, that negatively impacts the overall health outcomes of minority women with PFDs. Patient-provider relationships also play a pivotal role. Providers contribute to barriers in various ways, including general miscommunication, sparse patient education, cultural ineptness, or lack of accessible resources. Miscommunication can be particularly pronounced for minority women, such as Spanish-speaking patients, who may face language barriers and cultural differences.5 The dearth of culturally competent health care providers or those proficient in the patient’s language represents an additional layer of complexity, impeding effective communication and the building of trust between the patient and health care provider.
To address these multifaceted barriers effectively, a comprehensive approach is necessary. While there is great value in population level studies in determining causes for health disparities in minority women receiving care for PFDs, there is a need for more individualized research. Focus groups of minority women with PFDs are a crucial component of this comprehensive approach. These groups offer a platform for women to share their unique experiences, concerns, and preferences in a safe and supportive environment, allowing providers to hear from their patient populations specifically.
In our focus group study, we aimed to understand the level of knowledge about PFD diagnoses and treatments, provider-patient relationships, and barriers to PFD care among minority women. Four semistructured focus groups of Hispanic English-speaking (HE), Hispanic Spanish-speaking (HS), and African American women were conducted at the Desai Sethi Urology Institute in Miami, Florida. The HE group (n = 2) and African American group (n = 4) were conducted in English. Two HS groups (n = 7) were conducted in Spanish. Moderators asked participants questions regarding knowledge of PFDs, symptom burden, and treatment seeking and experiences. Transcripts were independently analyzed and coded by authors. A general inductive approach involving a systematic analysis of themes was used to examine key themes related to PFD knowledge, patient-provider relationships, health care—related social needs, and other general barriers to care among participants.
These focus groups shed light on an array of barriers that minority women face in accessing treatment, as shared through personal accounts. We found that participants reported significant negative impacts of PFDs on quality of life and were very interested in pursuing treatment. However, there was limited understanding of underlying PFD etiology, and awareness of treatment options may be inhibiting treatment-seeking behaviors (Table 1). When examining patient-provider relationships in this population, patients largely felt comfortable discussing symptoms and treatments for PFDs with their provider. They feel more comfortable with a female provider, but they don’t feel uncomfortable with a male provider. One patient suggested that increased availability of educational materials and more time spent explaining diagnoses and treatment could improve the perceived patient-provider relationship (Table 2). Our analysis showed that these women faced barriers including issues with transportation, cost of care, lack of insurance, scheduling difficulties, not knowing where to go for treatment, work-related stress, and difficulties finding childcare. When examining SDOH as barriers to care, we found that neither of the 2 HE patients reported any SDOH issues, while 4 of 7 HS women reported issues with transportation, insurance, and/or cost. However, language was not a barrier for our population due to availability of Spanish-speaking providers and interpreters in Miami (Table 3). The collection of themes through these analyses revealed to us the need for greater investment in access for our patients, particularly those who are Spanish speaking.
Table 1. Themes and Representative Quotations Regarding Care-Seeking (n = 13)
| Theme | Code | Supporting quotations (group, participant No.) |
|---|---|---|
| Symptom bother from PFDs | 1.1 Urinary incontinence symptoms are extremely bothersome | “Both are very uncomfortable and are a problem.” (AA, 23) “It’s very bothersome because no one likes to be like that and being on top of changing.” (HS, 53) “Before, if I coughed or sneezed, I leaked—it was very bad and very uncomfortable. I would need to go to the bathroom very often.” (HE, 16) |
| 1.2 Prolapse is very bothersome | “Yes, I have to place a hand in my vagina to push up on the bulge to urinate or have a bowel movement every time I have to use the bathroom.” (AA, 20) “I go to the bathroom and I kind of push it back inside.” (HS, 50) |
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| Social and daily life impact | 2.1 Sex life affected | “Intercourse was really, really, and I stress really, painful to the point where I associated sex with pain.” (AA, 20) “Every time that I had a sexual activity, I felt pain. That’s where I decided to step away.” (HS, 53) |
| 2.2 Embarrassment | “When it comes to my social life, it has taken a major toll: not being able to go out as I please or enjoying the little things, like going to dinner with my girlfriends, because I get self-conscious about getting up too much to go to the bathroom.” (AA, 20) “It impacted my self-esteem, marriage, and made me feel like I am not a woman, dealing with something so severe.” (AA, 20) “It is embarrassing not having control over something you should have control over.” (AA, 23) |
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| 2.3 Sleep affected | “I cannot even sleep comfortably.” (AA, 23) | |
| 2.4 Work affected | “In fact, now if I had a job where I had to lift a weight I wouldn’t be able to do it because the problem would get worse.” (HS, 50) “In my case, the disadvantage is that I can’t work because due to my condition, I was unable to work.” (HS, 34) “It was worse before; when I think back to those moments, having a full-time job, I would have to factor it into my daily routine. I had to wear pantiliners because sometimes I couldn’t make it to the bathroom in time.” (AA, 42) |
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| Understanding of PFDs | 3.1 Can differentiate between stress and urge incontinence | “It doesn’t happen when I walk. Mainly it happens when I laugh out loud, or when I sneeze.” (HS, 46) “I can differentiate between the two: I know what urge incontinence feels like. Leakage due to stress incontinence comes when laughing, sneezing, coughing.” (AA, 23) “I experience stress incontinence when coughing. Everything else is related to the PFD: hypertonic PF.” (AA, 42) |
| 3.2 Cannot differentiate between stress and urge incontinence | “Cannot differentiate between the two, especially when it became so bad.” (AA, 20) | |
| 3.3 Lack of knowledge | “I thought it was a normal part of getting older. I did not even connect childbirth with having these symptoms.” (AA, 42) | |
| Awareness of treatments | 4.1 Aware of urinary incontinence treatments | “I had a sling at the beginning to hold it up because, as you age, the vagina drops. Due to kids too.” (AA, 19) |
| 4.2 Unaware of urinary incontinence treatments | “I did not know about surgery until #16 mentioned so it is something I will inquire about.” (HE, 1) “I didn’t know there was medication.” (HE, 16) “No.” (HS, 54) |
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| 4.3 Aware of vaginal pain treatments | “I don’t know of any specific way other than this cream, which is an estrogen that eases dryness and vaginal thinning.” (HE, 1) | |
| 4.4 Unaware of vaginal pain treatments | “I don’t know how it can be treated.” (AA, 23) | |
| Decision-making for treatments | 5.1 Interested in treatment | “I don’t know why anyone wouldn’t want to get treatment.” (AA, 20) |
| 5.2 Prefers medication to surgery | “When I looked into surgical options, I saw so many reports about the mesh or the sling not being effective; it really discouraged me from going the surgical route if I needed it. I was pretty open to medication.” (AA, 42) “I wouldn’t go straight into surgery, I would try medication.” (AA, 19) |
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| 5.3 Prefers surgery to medication | “Regarding surgery, it was not a quicker fix, but I feel like it was more beneficial long term. With medication, when 1 thing stops working, you have to try something else and it becomes more of an experiment than getting to the root of the problem.” (AA, 20) “If we can fix it with surgery, let’s do it and take care of it. Sometimes medicine just takes a little longer and I’d rather nip it right out.” (HE, 16) |
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| 5.4 Equivalent on medication and surgery | “It wouldn’t matter to me—whichever one would immediately fix the problem is the one that I would go with.” (AA, 23) “I would like to know the options and weigh them. It depends on the medication.” (HE, 1) |
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| Impact of treatments | 6.1 Treatment was successful | “After 2-3 years of suffering from this, I had surgery by a doctor from UM. They lifted my bladder and when they did that, it was wonderful—it stopped all of it.” (HE, 16) “So, thankfully, it was controlled with the exercises and that medicine.” (HS, 59) “After my surgery and therapy, I have noticed a significant difference; it is more manageable now.” (AA, 20) |
| 6.2 Treatment was unsuccessful | “They did a procedure with a sling, which was not successful.” (AA, 19) “He gave me some tablets for my treatment but they didn’t work.” (HS, 36) |
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| Abbreviations: AA, African American; HE, Hispanic English-speaking; HS, Hispanic Spanish-speaking; PF, pelvic floor; PFD, pelvic floor disorder; UM, University of Miami. | ||
Table 2. Themes and Representative Quotations Regarding Patient-Provider Relationship (n = 13)
| Theme | Code | Supporting quotations (group, participant No.) |
|---|---|---|
| Comfort with discussing symptoms and treatments with their providers | 1.1 Comfortable discussing with providers | “It was easy for me to speak up and be open with my doctors.” (AA, 20) “I am very comfortable.” (AA, 23) “I had no trouble with her.” (HE, 1) “I don’t feel ashamed telling the doctor what I feel and what I have.” (HS, 36) “Yes, with a doctor I feel comfortable because we’re trying to find a solution.” (HS, 46) |
| 1.2 Uncomfortable discussing with providers | “I have a lot of friends like that—they would talk to everyone else but their doctor.” (HE, 16) | |
| Gender of provider | 2.1 Gender of provider does matter | “I feel that when the doctor is a woman, it’s easier.” (HS, 59) “But I do prefer and seek out female doctors.” (HE, 1) |
| 2.2 Gender of provider does not matter | “No, gender does not affect this at all. My ob-gyn is male and I am very comfortable explaining to him what medical issues I have.” (AA, 23) “I don’t have a problem either; it doesn’t matter if they are male or female.” (HE, 16) “For me it’s the same if it’s a male or female doctor.” (HS, 1) |
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| Language as a barrier | 3.1 Language is not a barrier | “No, because they speak Spanish. There is always someone, and if not, they give you an interpreter.” (HS, 54) “Language barrier is not a problem.” (HE, 16) |
| General patient experience | 4.1 Experiences with providers | “I suffered for many years not knowing where to go because each doctor refers you to another and it was like running in a circle—it was exhausting.” (AA, 20) “I found the right doctor—I think that is key—and I was able to get taken care of.” (HE, 16) |
| 4.2 Suggestions for patient experience improvement | “It would be important to have some flyers to read at the offices… it is a better way to explain.” (HS, 46) “The most important thing would be to know where to find help.” (HS, 34) |
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| Scheduling appointments | 5.1 Scheduling appointments is an issue | “The only issue is scheduling my appointments when I am not at work.” (AA, 23) “When you go to book an appointment, there’re very far out.” (HS, 2) |
| 5.2 Scheduling appointments is not an issue | “I don’t have those issues.” (AA, 19) | |
| Abbreviations: AA, African American; HE, Hispanic English-speaking; HS, Hispanic Spanish-speaking. | ||
Table 3. Themes and Representative Quotations Regarding Social Determinants of Health (n = 13)
| Theme | Code | Representative quote |
|---|---|---|
| SDOH | 1.1 Issues with cost | “…when neither of us had work…I had to cancel all of my specialists because I didn’t have a way of paying for it…when you’re short, you just think about what’s necessary…and I let go of the rest. I give it over.” (HS, 59) “We always have that doubt to see if we’re going to be able to pay for the visit, to see if we’re going to be able to pay for medicine.” (HS, 59) “One of the reasons why I haven’t had surgery, is that although I have my insurance that covers all the expenses, I have other expenses at home that I have to pay.” (HS, 50) |
| 1.2 Issues with transportation | “I’ve missed 2 important appointments because of the problem with transportation.” (HS, 53) “…is hard is the parking because I have a lot of appointments.” (HS, 54) “…I take a train to Jackson. There and back it’s 4 hours of daily transportation.” (HS, 59) |
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| 1.3 Issues with food/housing security | “…food that’s expensive.” (HS, 53) “The important thing is for me to be able to cover my basic needs.” (HS, 59) “It’s difficult. It’s more difficult every day now.” (HS, 54) |
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| 1.4 Safety | “…my husband goes with me because he’s afraid because of safety every time I go to my appointment.” (HS, 59) | |
| Insurance | 2.1 Issues with insurance | “In my case, I don’t have medical insurance.” (HS, 34) “I just have the Jackson insurance with my husband’s support, but he’s limited just like I am.” (HS, 59) |
| Access to health care | 3.1 Not knowing where to go for care | “I suffered for many years not knowing where to go because each doctor refers you to another and it was like running in a circle—it was exhausting.” (AA, 20) “Maybe if I had gone through my ob-gyn first, I would have gotten to my PF issues quicker.” (AA, 42) |
| PCP relationships | 4.1 Issues with PCP access/care | “No…because I don’t have insurance” (HS, 34) “… [my PCP] gives me a lot of medicine that I don’t accept because—I mean, she gave me medicine for diabetes that caused cystitis with bleeding because that medicine had that side effect, and she didn’t warn me.” (HS, 59) |
| Previously not identified factors | 5.1 Impact of work-related stress | “Mine is not stress from home, it’s stress from work.” (HE, 1) “My translation deadlines are sometimes crazy…work-related stress.” (HE, 16) |
| 5.2 Impact of dependent children at home | “Well, I’m a single mom…the surgery didn’t work because I went back to work after a month to be able to cover my expenses—the house, the car. At that time, my children were underage.” (HS, 50) | |
| 5.3 Language barriers | “No, I haven’t had any problems.” (HS, 53) “There is always someone [who speaks Spanish].” (HS, 54) “They give us an interpreter.” (HS, 59) |
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| Abbreviations: AA, African American; HE, Hispanic English-speaking; HS, Hispanic Spanish-speaking; PCP, primary care provider; PF, pelvic floor; SDOH, social determinants of health. | ||
The barriers to care for minority women seeking treatment for PFDs are complex and multifaceted, encompassing patient-, provider-, and SDOH-related factors. Addressing these barriers requires a comprehensive approach that includes patient education, provider training, and system-level changes to improve access to care and treatment options. The utilization of patient focus groups emerges as a powerful tool in breaking down these barriers, providing a platform for minority women to voice their concerns and contributing to the development of more inclusive and effective health care practices. The qualitative insights gained from focus groups enable a deeper understanding of the patient perspective, guiding the development of targeted interventions. Listening to the narratives of minority women helps identify specific areas where care can be improved, such as offering translation services, creating culturally sensitive educational materials, investing in mobile clinics within communities themselves, and providing staff training in cultural competency. The direct engagement of patients through focus groups fosters a patient-centered approach, bridging the communication gap between minority patients and providers, especially in the context of care for PFDs. By actively and continuously listening to the narratives of minority women, health care providers can work toward dismantling the obstacles that hinder optimal and equitable care, ultimately promoting better health outcomes and increased patient satisfaction.
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