Barriers to Type 2 Diabetes Mellitus Management for Older Hmong Patients with Minimal English Language Skills: Accounts from Caregivers, Case Managers, and Clinicians

Abstract

Type 2 diabetes mellitus prevalence rates for Hmong Americans in Wisconsin are more than double that of non-Hispanic Whites. The Hmong’s history, lifestyle (dietary and behavioral patterns), and reliance on traditional medicine contribute to their increased risk of diabetes. This qualitative study aimed to better understand the barriers challenging older Hmong patients’ ability to manage diabetes. Asian Americans have long been overlooked in health-related research, but recent disaggregated data of specific ethnic groups reveal significant health inequities. Among the different ethnic groups, there is a significant lack of research on the Hmong Americans. Three participant groups (Hmong American family caregivers, Hmong American case managers, and clinicians from different racial backgrounds who provide care for Hmong patients) were recruited from the community and interviewed to understand the barriers experienced by older Hmong patients with minimal English language skills in managing their diabetes. Directed content analysis of the data resulted in three major themes: adherence to culture, health inequity, and managing diabetes. Subthemes included Hmong herbs and shamans, lack of trust in Western medicine, the significance of rice, language barriers, lack of cultural sensitivity, health literacy, monitoring glucose, medicine compliance, and nutrition. Minimal English language skills and low literacy rates (health and education) contribute to their strong adherence to cultural practices which challenges Western medicine, creating difficulty for older Hmong patients to manage their diabetes. Recognizing cultural differences and barriers will enable healthcare providers to improve and cater the treatment options, bridging the gap between older Hmong patients and Western medicine.

Background and Significance

Recent data collected (2011–2012) from the National Health and Nutrition Examination Survey (NHANES) revealed that over 50% of Asian Americans living with type 2 diabetes are undiagnosed. In addition, the age-standardized total prevalence of type 2 diabetes (both diagnosed and undiagnosed) is 21%, which is comparable to total rates among Black Americans and Hispanic Americans, and nearly double the total rate among non-Hispanic Whites [1]. Diabetes is a growing public health crisis with a total economic cost of diagnosed diabetes of $327 billion in 2019—a 26% increase from $245 billion in 2012 [2]. Healthcare costs are 2.3 times greater for Americans with diabetes compared to those without diabetes. Type 2 diabetes is the seventh most common cause of death in the USA, but it is the fifth most common cause of death for Asian Americans [3].

Asian Americans have long been overlooked in health-related research compared to other racial and ethnic groups [1]. As an aggregate, they are the fastest growing racial group with an expected growth of 213% by 2050 (compared to the 49% growth rate of the USA) [4]. Disaggregating Asian American ethnic groups illuminates considerable health inequities, including diabetes prevalence rates [5–7]. Limited research has shown that Hmong Americans experience worse health outcomes compared to other Asian Americans. While one systematic review revealed that the Hmong American prevalence rate for “diagnosed” diabetes is 11.3% compared to 6% non-Hispanic White [8], a study in Wisconsin revealed the Hmong American diabetes prevalence rate is 19.1% compared to 7.8% for non-Hispanic White [9]. Some studies found the risk for diabetes is over three times higher for Hmong Americans compared to non-Hispanic White when adjusted for age, sex, BMI, and insurance [9, 10]. More important to note is that developing type 2 diabetes seems to be a local phenomenon for Hmong Americans, who are 20 times more likely to develop diabetes than Hmong living in Thailand [10].

The older Hmong in this study were resettled in the USA as part of a refugee program between the years 1975 and 2004. When the USA pulled out of Vietnam in 1975, the Hmong fled Laos to Thailand to escape genocide after aiding the US CIA in a “Secret War” during the Vietnam War. After more than 45 years, the 2019 US Census estimated that the Hmong American population was 327,000 [11]. The Hmong Americans’ transition from their traditional and agrarian lifestyle to a westernized US lifestyle resulted in a decrease in physical activity and a new diet consisting of high carbohydrates, high-fats, and low fiber [12, 13]. This has increased their risk for diseases such as diabetes, hypertension, heart disease, and obesity. This phenomenon, termed the “New World Syndrome,” also affected other populations who experienced a similar transition from traditional to westernized lifestyles (e.g., Native Americans, and Hispanic Americans) [10, 14, 15].

Very few studies examine the health inequities existing in Asian American communities [16], resulting in a lack of national studies that include Hmong Americans [17]. With the recency of Hmong migration to the USA (especially compared to East and South Asians), there is a dearth of literature on this population, including the lack of attention on the cultural and language barriers of the Hmong population living in the USA [12, 18–21] and the lack of cultural understanding and sensitivity to providing care for Hmong American patients [22–24]. These barriers significantly contribute to the high prevalence rate of diabetes in the Hmong American population.

This pilot study explored the needs and challenges of diabetes management for older Hmong American patients with minimal English language skills through the experiences of their bilingual adult children caregivers, bilingual Hmong case managers, and healthcare providers. This study aims to provide a better understanding of the health needs of and bring cultural awareness of the Hmong American community to the forefront. Recognizing cultural differences and barriers will enable healthcare providers to improve treatment options for these older patients, thus bridging the gap between older Hmong patients and Western medicine.

Methods

This qualitative study explored the experiences of three groups involved in the care of helping older Hmong patients with minimal English language skills manage their type 2 diabetes: family (caregivers), community (case managers), and health care (providers). We used purposive sampling to recruit participants from clinics and community settings [25]. We also used a snowball sampling technique by asking participants to refer other potential participants fitting our inclusion criteria [25].

This study was approved by the Health Sciences Institutional Review Board at the University of Wisconsin-Madison with a waiver of signed consent. All participants were emailed an informed consent to review, along with the confirmation time for an interview. We received verbal consent and answered any questions regarding the study at the beginning of the interview. Two Hmong undergraduate students completed their human subjects training and were HIPAA certified to assist in this pilot study.

Eligibility criteria included the following: (1) being bilingual in Hmong and English, (2) having a parent/patient with diabetes and with minimal English language skills, and (3) having previously cared for/worked with or are currently caring for or working with Hmong elders or patients (Hmong elder is a term of deference used within the family system and community). The final sample size was reached once theme saturation to the responses became redundant and attempts to uncover new themes failed to reveal novel data for each group [26]. Participants were compensated $50 in appreciation for their time.

Data Collection

Semi-structured interviews were conducted between December 2020 and May 2021. In following COVID-19 restrictions and guidelines, interviews were conducted over a secure Zoom link connected to the university. All interviews were audio-recorded and conducted in English. Interview times ranged from 30 to 90 min. Table 1 describes the categories of questions in the semi-structured interview guide. The interview guide was adapted slightly for each group of participants.

Table 1.

Categories of questions asked in semi-structured interview

Categories
Influence of culture on diabetes management
Challenges of diabetes management within a cultural context
Experiences and challenges of helping older Hmong patients with minimal English language skills manage their diabetes
Resources utilized during diabetes management
General healthcare experience

Data Analysis

All audio recordings of interviews were transcribed verbatim by a HIPAA-approved transcription services on campus. Transcripts were independently coded by study team members, who then met to review codes and categories. Discrepancies were discussed until a group consensus was reached.

Data was analyzed using directed content analysis [27, 28]. Categories identified during the interviews became the preliminary codebook. Each study team member independently coded each interview using the preliminary codebook. Discrepancies were resolved through group consensus. Categories and codes were refined and agreed upon by study team members using an iterative process to create a final codebook, which was used to code all transcripts. The codes then informed emerging themes. Each study member searched for patterns or themes across all interviews later defined and named for the master codebook.

Results

Participant Characteristics

We interviewed four caregivers, five community case managers, and four healthcare providers (N = 13). One participant declined to participate in the study. Ten of the 13 participants were Hmong (79%), 38% of the participants were female, and 62% were male. Table 2 reflects participant demographics.

Table 2.

Participant characteristics

	N = 13
Characteristic	Label	N	%
Gender	Male Female	5 8	38.5 61.5
Identification	Caregiver* Community case managers* Healthcare provider**	4 5 4	30.8 38.5 30.8
Race and ethnicity	Hmong American Asian American White American	10 1 2	76.9 7.7 15.4

^*Caregivers and community case managers were all Hmong American participants

^**Healthcare providers were comprised of one Hmong American, one Asian American, and two White American participants

We identified three major themes across all three groups of participants: adherence to culture, health inequity, and managing diabetes. The major themes were further divided into sub themes and elaborated below. Table 3 outlines the major themes and subthemes, including additional illustrative quotes.

Table 3.

Major themes, subthemes, and context of themes

Major themes	Subthemes	Context	Additional illustrative quotes
Adherence to culture	Hmong herbs and shaman	Herbs are commonly used by the Hmong to treat ailments. The Hmong seek the aid of a shaman, which is one of their traditional practices.	And sometimes, they like to use their herbal medication too, but some of those herbal medications [are not] guaranteed. I know many of them are good, but some of [them] are [not] effective so you have to take a lot.
	Lack of trust in Western medicine	The older Hmong patients are hesitant to seek care from hospitals, which leads them to continue seeking traditional medical help.	And obviously trust is a big issue in the Hmong community, and they would tend to trust their family members more than, more than anybody else if they’re, you know. And that’s, that’s a big plus if you can educate the family and the patient trusts the family to give them the medications then that would be better overall…
	Significance of rice	White rice is a staple food in the diet of the Hmong people.	They don’t think it’s the diet, they don’t think it’s because of the rice, they don’t think it’s, that they don’t, for like a balanced meal, they don’t believe in a balanced meal you know, they just eat rice with water, that’s health enough, that’s low calorie enough for them, that it shouldn’t’ spike up their blood sugar.
Health inequity	Language barrier	The older Hmong patients experience a language barrier to English, resulting in health inequities.	Because they really, most of my patients I would say are illiterate and not just in English but in Hmong as well. So, it’s difficult to, you know to treat them because of the compliance issues. And they don’t really understand, a lot of the English words that we would try to, would try to educate them. Overall, yeah it’s a compliance issue.
	Cultural insensitivity	Lack of cultural sensitivity from Western treatment continues to burden the older Hmong patients, leading to health inequities from lack of compliance to treatment options.	So, a common problem that occurs in diabetes is diet and a common mistake that is made is referring to a culturally non-informed dietician who basically says stop eating so much rice.
	Health literacy	Many older Hmong patients (with traditional health views and a lack of exposure to the practice of modern medicine) have lower levels of health literacy.	I think they just focus on, okay, diabetes is blood sugar, so the main, the main word is sugar, so they think minimizing just any sweets and sugar is good for them. And so I think we do lack the education.
Managing T2DM	Monitoring glucose	The lack of confidence, physical touch of the lancet (a source of pain), and embarrassment makes glucose monitoring an unpleasant, albeit necessary, experience for the Hmong patients.	I think a lot of the time they don’t understand why they have to do it like every, like that much, you know. And so, and it’s all the poking too, you know. And it is painful for some of them, so.
	Medicine compliance	The older Hmong patients often stop taking their medication upon experiencing symptoms associated with the medication or when they feel “better,” resulting in incomplete medication compliance. Medication compliance resumes when the older Hmong patients’ diabetes worsens, or they experience severe symptoms.	In the older generation, their experience and their belief set is that when you feel bad, you take a medicine and it’s a good medicine if it makes you feel better fairly promptly. When you feel good, you don’t take a medicine, because you don’t need it and taking medicines when you feel good will harm your body, not help it.
	Nutrition	The older Hmong patients do not know foods to eat or not to eat. Their understanding of diet differs from the Western healthy dietary guidelines.	They don’t think it’s the diet, they don’t think it’s because of the rice, they don’t think it’s, that they don’t, for like a balanced meal, they don’t believe in a balanced meal you know, they just eat rice with water, that’s health enough, that’s low calorie enough for them, that it shouldn’t’ spike up their blood sugar. So I think just the food, they don’t believe that it’s the food that, that’s why there’s blood sugar.

Adherence to Culture

For the older Hmong patients, language barriers limit their ability to acculturate and integrate into American society, including the western health care system [29–31]. Difficulty integrating also means that the older Hmong are more likely to maintain traditional cultural practices. Participants addressed this adherence to culture in three traditional practices and beliefs: herbs and shamans, a lack of trust in western medicine, and rice.

Hmong Herbs and Shaman

Caregiver participants shared ways in which the Hmong culture was involved in their parent’s diabetes management. They talked about how their parents utilized Hmong herbs and consulted with a shaman. Participants spoke about the importance of using traditional Hmong herbs and in their parent’s diabetes management. One participant stated:

The herbals they have that they used for many years that’s passed on from their parents to them. So, it’s the things that they are not only familiar with but trust that it has helped them with all the symptoms. So- and I say try to help, because to them, they think that that’s helpful, but in some ways it may not...

Lack of Trust in Western Medicine

Many participants shared that their elderly patients are often hesitant to seek care from a hospital regarding their diabetes. Participants expressed that hospital visits are intimidating for the older Hmong patients, who question the effectiveness of the prescribed medication. However, each of the participant groups stated a different aspect of the older Hmong patient’s lack of trust in Western medicine. Case managers often escort their clients to clinic visits and many expressed similar concerns as this one case manager stated:

I feel like they’re still a little bit hesitant about the western medication, which can be, you know, scary at times for them.

The caregivers also expressed that trust is a major issue in the Hmong community.

And obviously trust is a big issue in the Hmong community, and they would tend to trust their family members more than, more than anybody else if they’re, you know. And that’s, that’s a big plus if you can educate the family and the patient trusts the family to give them the medications then that would be better overall...

Even providers mentioned the trust factor for their Hmong patients, particularly around medications when symptoms are minimal, but side effects are significant. This participant used this example and also added that even with suggestions on how to manage the diarrhea or if medications were switched afterwards, the element of trust is already lost:

Say I really don’t notice much my blood sugar affecting me, but I agreed because my family pressures me to try the medicine and the metformin gives me diarrhea every day, I don’t trust your medicine. They cause me more problems than they do benefit.

Significance of Rice

Many Hmong elders prefer to eat traditional Hmong food on a daily basis, of which white rice is a staple and considered part of the balanced meal. A traditional Hmong diet consists of white rice along with a side dish. During the interview, the majority of the participants mentioned the impact of white rice on the Hmong culture and diet, making it difficult to substitute. One participant stated:

If you tell a Hmong elder, don’t eat rice. It’s like what, you trying to kill me?

Health Inequity

While multiple factors contribute to the health inequities experienced by the older Hmong patients, three major topics that participants continuously raised were language barriers, cultural insensitivity, and health literacy.

Language Barriers

All participants talked about how the older Hmong patients faced challenges due to their minimal English language skills. Language barriers were exceptionally prominent between the elderly patients and the healthcare providers during hospital visits. Participants also spoke about how the older patients’ lack of English proficiency created challenges in managing their diabetes. One caregiver participant stated:

One of the challenge is that my parents, they do not know English. And they do, they have no idea about what the doctor talk about, they have no idea sometime, you explain to them, they do not understand.

Cultural Insensitivity

Participants expressed the persistent lack of cultural awareness in the healthcare field towards Hmong and other minority patients. Hmong participants stated that some concepts, such as the “Asian” diet, are often not accounted for during the treatment plan of the patients. Comments such as this provided by one caregiver participant were mentioned by other Hmong participants:

I met with the diabetic educator with my mom, it was not helpful at all, because the foods were completely different that the Hmong people normally consume on a daily basis.

Health Literacy

When asked about challenges to help Hmong elders manage their diabetes, the caregivers and case managers spoke about their parents’/clients’ lack of understanding of diabetes and chronic diseases. One caregiver stated:

I think engrained in pretty much the Hmong culture is you take the medication and all of a sudden your disease is gone, so the concept of chronic disease was very difficult for them to understand that you have to take this medication daily to prevent the progression of your disease.

Managing Diabetes

Diabetes is a complex chronic disease that is already difficult to convey especially when symptoms are not always visible. Participants shared three areas most challenging for Hmong elders to manage their diabetes: monitoring their glucose, medicine compliance, and nutrition.

Monitoring Glucose

Caregivers expressed that their elderly parents found that pricking of the finger to monitor their blood glucose to be an unpleasant experience resulting in resistance to checking their glucose. Despite the unpleasantry, the caregivers found that routinely checking the blood glucose made managing their parent’s diabetes easier. One participant stated:

Even though you feel perfectly fine, you actually may possibly have diabetes. Having the blood sugar monitor was something that was really helpful in helping with the diagnosis and when she started medications, she could check her blood sugar and see that it would come down, the symptoms that she was having of diabetes that she didn’t know were symptoms of diabetes were getting better.

Medicine Compliance

Community case managers and providers addressed challenges and barriers to managing the diabetes of their Hmong patients and clients. They spoke about the signs of resistance against treatment plans. In addition, there was mention of the inconsistency of the patients taking their medications as prescribed by their healthcare provider.

Yes, we have clients that- usually it’s right at the beginning when they are diagnosed- they don’t believe it because they’re not that sick yet. They’ll take it maybe like for a month or two and then they start feeling better and they stop taking it and then they start getting sick again and then it shows that they’re numbers are going up and they’ll take it again.

Nutrition

All Hmong participants expressed that the elderly patients lack an understanding of the foods that they should and should not be consuming as part of their diabetes management.

They just don’t know what they’re supposed to eat. So sometimes because they don’t know what they’re supposed to eat, then my clients just starve to hopefully see their A1C drop.

According to the participants, the Hmong elders’ low health literacy around diabetes management, particularly around nutrition, often conflicted with a traditional Hmong diet.

Discussion

Older Hmong patients face ongoing issues in properly managing their diabetes. Results from this pilot study suggest that adherence to Hmong culture and ongoing health inequity both contribute significantly towards this issue. Hmong participants expressed that the Hmong elders still heavily rely on the use of traditional practices such as Hmong herbs to treat their diabetes. Continued adherence to their cultural practices regarding health after decades of living in the US signals a lack of trust in western medicine. Many of the health inequities discussed by the participants resulted from language and cultural barriers, cultural insensitivity from the health care system, and patient health literacy.

The patients’ cultural adherence influences their trust and understanding of Western medicine and contributes to their heavy reliance on shamans and Hmong herbs. The lack of trust and understanding of Western medicine increased patients’ hesitancy in complying with prescribed treatment plans by their doctor aligns with other published studies [17, 32–34]. Participants’ descriptions of how the Hmong elders adhere to cultural traditional health practices and diet reflects their inability to manage diabetes is also confirmed in other studies that found older patients were more likely to treat themselves using herbal medicine before seeking care from a doctor [12, 17, 33, 35].

We found that language barriers contributed to their limited health literacy. Health literacy is a crucial aspect of healthcare and significantly impacts the treatment plans of all patients, but especially for patients experiencing language barriers with their providers and the health care system. Similar to our findings, Khuu et al. (2018) found a lack of understanding of health information and a low health literacy rate among Hmong American patients. A scoping review of Asian Americans and diabetes reported that the Hmong had the lowest health literacy regarding diabetes leading to misunderstanding, misconceptions, confusion, and lack of knowledge around this chronic disease [17, 35].

All participants addressed the issue about the lack of nutritional education and understanding of the appropriate foods to help manage diabetes. The older Hmong patients literally understand diabetes to mean sugar in the blood and do not understand why rice needs to be eliminated from their diet. This often results in some patients taking extreme measures to reduce their glucose by starving themselves. Culhane-Pera et al. (2007) found similar results in how the Hmong approach their diet. Our interviews also revealed that cultural insensitivity from the health care system significantly impacted patient response to their treatment plans and heavily contributed to the challenges for older Hmong patients. Non-Hmong nutritionists and some providers consistently advised the older Hmong patients to eliminate rice from their diet without understanding that they did not follow what is considered a “typical” American diet. Hmong participants stated that the Hmong elders preferred to prioritize rice over other nutrients. Franzen and Smith (2009) also found that the importance of rice to the Hmong diet makes it difficult for the Hmong to alter their dietary behavior. Hmong elders’ reluctance to alter their diet is consistent with other published studies [34].

Our findings suggest that a major contributing factor towards the quality of care that the Hmong receive is cultural insensitivity. Western healthcare can take steps to acknowledge the cultural sensitivity of the Hmong population such as how culture influences diet and understanding of health and disease. The Hmong are one of many Asian ethnic groups who experience continued cultural insensitivity from western health care providers regarding their diet and culture [22].

There were several limitations present in this pilot study. First, utilizing snowball sampling makes it difficult to generalize the data and it may not be representative of the whole Hmong American population or the Asian American community. Also, the Hmong community in Wisconsin may differ in some respects from the Hmong communities in California and Minnesota where the larger population increases the availability of more concordant care. Second, although we reached data saturation, given the smaller sample size for each interview group—caregiver, community case managers, healthcare provider—makes it difficult to generalize from the data and may also not be representative of the experiences of each group. Future research could expand the sample population to include the older Hmong patients and provide for a more comprehensive study.

Conclusion

This pilot study aimed to provide a better understanding of the health needs of and bring cultural awareness of the Hmong American population to the forefront. The lack of literature on the health of Hmong Americans also makes this study of greater importance. Hmong Americans are an at-risk group for developing type 2 diabetes mellitus. However, the health inequities, including those arising from language and cultural barriers between the patient and provider, significantly impacts the older Hmong patients’ ability to manage their diabetes and the care they receive from their healthcare provider. Oftentimes, their medical decisions are heavily dependent on their cultural practices as they have maintained a strong adherence to their culture based on our findings. Our findings also reveal that the barriers posed by discordant care and language barriers pose a major challenge for older Hmong patients. Recognizing these cultural differences and barriers will enable healthcare providers to improve and cater to the treatment of these older patients, thus bridging the gap between older Hmong patients and Western medicine and reducing the current health inequities. Our findings suggest that these issues are not cut and dry, but rather, complex. 

Funding

This work was supported by the UW Institute for Clinical and Translational Research startup funds: PRIV-20170808.

Declarations

Ethical Approval

This study was approved by the University of Wisconsin-Madison Health Sciences Institutional Review Board and was considered a minimal risk study.

Competing Interests

The authors declare no competing interests.