EXPLORING HEALTH PERCEPTIONS AND

DIABETES SELF CARE IN IU MIEN

OLDER ADULTS

A Thesis Presented to the Facultyof

California State University, Stanislaus

In Partial Fulfillmentof the Requirements for the Degree

of Master of Science in Nursing

ByMey C. SaephanhDecember 2015

CERTIFICATION OF APPROVAL

EXPLORING HEALTH PERCEPTIONS AND

DIABETES SELF CARE IN IU MIEN

OLDER ADULTS

byMey C. Saephanh

Signed Certification of Approval Page is on file with the University Library

Dr. Carolyn Martin, PhD, RNAssociate Professor of Nursing

Dr. Elizabeth Halifax, PhD, RNResearch Specialist, UCSF

April Roberts Aleman, MS, RNSchool Nurse, Watsonville, CA

Date

Date

Date

Signed Certification of Approval Page is on filewith the University Library

© 2015

Mey C. SaephanhALL RIGHTS RESERVED

iv

DEDICATION

To Mackenzie, Thonnie, Peter, Koy, Annie, and Nai—let’s be trailblazers. To

Roscoe and Keiko for keeping me company in the early mornings.

v

ACKNOWLEDGEMENTS

Thank you to all the participants and families in this study. You have

graciously volunteered to share your time, your home, and most importantly, your

experiences with me. To M. Saeyang, thank you for your help with translation.

To the faculty and staff at the School of Nursing, it has been a wonderful,

enriching experience. To Dr. Marla Seacrest and my classmates: Kristi, Jen, Wendy,

Melanie, Roberto, & Mahsa—it has been a blast. Marla, I’ve enjoyed your classes

and thank you for your input in this thesis.

To the Center for Excellence in Graduate Education and Student Engagement

in Research, Scholarship, and Creative Activity, thank you for your support.

To my committee chair and members, Dr. Carolyn Martin, Dr. Elizabeth

Halifax, and April Roberts Aleman, your guidance, support, and understanding have

been monumental to this chapter in my life. Carolyn you are an excellent advisor,

champion, and role model. I have enjoyed the seminars immensely and your wisdom.

Thank you for seeing this through with me. Liz, your thoughtful insights and

contributions have really improved this process for me. I utilize what I’ve learned

from your class in my practice every day. April, thank you for all the opportunities

you’ve given me. It was a pleasure to be your graduate assistant and work with you.

To my family and friends—thank you for putting up with me during this

process and for all your help. This would not be possible without you.

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TABLE OF CONTENTSPAGE

Dedication ............................................................................................................... iv

Acknowledgements................................................................................................. v

List of Figures ......................................................................................................... viii

Abstract ................................................................................................................... ix

CHAPTERI. Introduction........................................................................................... 1

The Impact of Diabetes ............................................................. 1Disparities in Diabetes .............................................................. 3Diabetes in the Iu Mien............................................................. 4Statement of the Problem.......................................................... 5

II. Review of the Literature ....................................................................... 7

The Chronic Care Model .......................................................... 8Diabetes and the Chronic Care Model ...................................... 11Population of Interest ................................................................ 12Role of Nursing......................................................................... 22

III. Methodology......................................................................................... 26

Institutional Review Board and Human Participants................ 26Subject Recruitment.................................................................. 26Inclusion Criteria ...................................................................... 27Procedure .................................................................................. 28Data Analysis ............................................................................ 30

IV. Findings................................................................................................. 31

Demographics ........................................................................... 31Cultural Barriers........................................................................ 33Mistrust ..................................................................................... 38Family Support.......................................................................... 39

V. Discussion ............................................................................................. 42

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Comparison to the General Population ..................................... 42Cultural Barriers and Mistrust .................................................. 47Family Support.......................................................................... 50Limitations ................................................................................ 51Implications for Practice ........................................................... 53

References............................................................................................................... 57

Appendices

A. Letter for use of the Care Model Image...................................................... 72B. University Institutional Review Board Approval ....................................... 73C. Informed Consent........................................................................................ 74D. Recruitment Flyer ....................................................................................... 76E. Questionnaire Tool...................................................................................... 77

viii

LIST OF FIGURES

FIGURE PAGE

1. The Care Model ................................................................................................ 9

2. Concepts Affecting Productive Western Healthcare Interactions in the OlderIu Mien Adults .................................................................................................. 33

ix

ABSTRACT

Asian Americans are at increased risk for diabetes and poor health outcomes

compared to the general population. Although the Asian American population is

increasing four times faster than the general population, diabetes research remains

limited. Diabetes research in Asian populations address the more populous groups

such as Chinese, Japanese, and South Asians; the less known ethnic groups of

Southeast Asians are often overlooked or clumped together despite differences in

health beliefs, health literacy, and access to healthcare. The aim of this study is to

describe the diabetes self care behaviors and health perception of Iu Mien older

adults. A descriptive research methodology using qualitative content analysis was

used to describe and categorize data from n=5 participants. Findings revealed themes

of cultural barriers in the form of language, knowledge gaps, and attitudes towards

Western medicine influence Iu Mien experiences with diabetes and the healthcare

system. Family support was found to be a critical component of diabetes

management. These findings increase the understanding of effective diabetes

management in this population.

1

CHAPTER I

INTRODUCTION

The Impact of Diabetes

Diabetes mellitus II (DM) is a chronic disease that affects 29.1 million people

in the United States (U.S.) (Centers for Disease Control and Prevention, 2014).

Worldwide, DM affects 387 million people and that number is expected to increase to

592 million by 2035 (International Diabetes Federation, 2013). It is a metabolic

disorder characterized by insulin resistance or a decrease in insulin production that

results in hyperglycemia (American Diabetes Association, 2014). Risk factors for

DM include age, obesity, decreased activity, genetic disposition, and comorbid

conditions such as dyslipidemia, cardiovascular disease, and hypertension.

Diagnostic criteria for DM include the following: (a) a hemoglobin A1C (measures

the concentration of glucose molecules that become irreversibly attached to

hemoglobin in red blood cells at a rate dependent on the blood glucose concentration

over the life span of the blood cell) of 6.5% or greater, (b) fasting plasma glucose ≥

126 mg/dL, (c) two hour plasma glucose ≥ 200 mg/dL/ during an oral glucose

tolerance test, and (d) a random plasma glucose ≥ 200 mg/dL/11.1mmol/L in a patient

with clinical signs and symptoms of hyperglycemia (American Diabetes Association,

2014).

Diabetes often leads to complications such as renal failure, neuropathy,

nontraumatic limb amputations, and blindness. The Centers for Disease Control and

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Prevention (CDC) estimates that 282,000 emergency room visits are due to

hypoglycemia yearly (2014). Diabetes is the seventh leading cause of death in the

U.S. The direct financial cost of DM is estimated to be $176 billion with 43% of

those costs associated with acute hospital care (American Diabetes Association,

2013). Indirect costs such as loss in work productivity are estimated to be $69

billion. Indirect costs do not account for changes in quality of life. Those with DM

have 2.3 times more healthcare expenses than the general population (American

Diabetes Association, 2013).

The cornerstone of DM treatment is self care management. Diabetes self care

includes lifestyle changes, medication management, problem solving skills, and

education (American Diabetes Association, 2015). Factors such as health literacy,

language, culture, access to healthcare, social support, self-efficacy, and acculturation

affect the management of DM (Choi, Lee, & Rush, 2011; Ngo-Metzger, Sorkin,

Billimek, Greenfield, & Kaplan, 2011; Oza-Frank, Stephenson, & Venkat Narayan,

2011; Sarkar, Fisher, & Schillinger, 2006). The American Diabetes Association

(ADA) recommends that treatment strategies and goals be patient-centered: goals

should consider the social and work environment, cultural beliefs, medical diagnoses,

physical and mental capabilities, and health priorities of individuals (ADA, 2015).

An active well-informed patient working in tandem with the primary care provider is

the key to successful lifelong management of DM.

3

Disparities in Diabetes

Health disparities exist in the prevalence of DM. The risk of DM is higher

and health outcomes are worse in minorities compared to non-Hispanic whites (Peek,

Cargill, & Huang, 2007). Asian Americans are at a 20% higher risk for DM

compared to non-Hispanic whites and it is the fifth leading cause of death in Asian

Americans (Office of Minority Health, 2013). Although the Asian American

population is increasing at a rate four times faster than the general U.S. population

(U.S. Census Bureau, 2012), research specific to DM in Asian populations remain

sparse. The myth that Asian Americans are a model minority with successful and

prosperous lives and few problems hides the unique problems and health risks of each

ethnic subgroup of Asian Americans (Suzuki, 1977). The diversity in immigration

histories, cultural beliefs and practices, and levels of acculturation make

generalizations difficult in ethnic Asian American populations. Research shows that

the prevalence of DM differs widely among Asian subgroups (Choi, Liu,

Paloniappan, Wang, & Wong, 2013; Staimez, Weber, Venkat Narayan, & Oza-Frank,

2013). Compared to non-Hispanic whites, Asian Indians, Chinese, Filipino, Japanese,

Korean, and Vietnamese Americans have a higher prevalence of DM after adjusting

for age and body mass index (Wang et al., 2011). The prevalence of DM also varies

among Asian countries with Asian Indians having the highest rate of DM at an earlier

age compared to other countries (Diabetes Epidemiology Collaborative Analysis of

Diagnostic Criteria in Asia, 2003). To complicate matters, wide variability exists in

the recruitment, definition, and methodology used to estimate the prevalence of

4

disease states in ethnic Asian subgroups, which limits comparisons between different

racial groups and within subgroups (Staimez et al., 2013). Health studies concentrate

on the six largest groups of Asian Americans—Chinese, Filipino, Asian Indians,

Vietnamese, Korean, and Japanese—leaving a knowledge deficit among the many

other Asian subgroups.

Diabetes in the Iu Mien

Diabetes research in Asian populations usually focuses on larger and more

established populations of Asian Americans such as Chinese, Japanese, South Asians,

and Pacific Islanders. There is very little data available on the Iu Mien (Mien), a

Southeast Asian ethnic group that resettled in the U.S. under the Indochinese Refugee

Assistance Program and the Refugee Act of 1980 (U.S. Department of Health and

Human Services, 1982). The Mien share similar experiences with other Southeast

Asian refugees such as the Vietnamese, Cambodians, and Laotians; however, their

small numbers, relative isolation, lack of exposure to Western ideas, concepts, and

technology, and lack of access to education and healthcare creates challenges for

healthcare providers in the communities where they live.

Mien communities are located in California, Oregon, and Washington. In

1997, California was estimated to have 87% of the Mien population in the U.S. or

27,920 (MacDonald, 1997). A recent community population survey identified the

population of Merced County, California as 9.6% Asian and DM as one of the most

prominent healthcare problems of the county (Merced County Department of Public

Health, 2012). This county ranks 50th out of 58 counties (with rank 1 having the

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lowest mortality and the 58th the highest mortality) in the state for deaths related to

DM in 2008-2010 (Merced County Department of Public Health, 2012). The only

survey of the Mien population in Merced County estimated the population to be 1,220

(Barker & Saechao, 1997).

Statement of the Problem

The prevalence of DM in the Mien population is not known. The absence of

aggregate data and health information for this ethnic group makes it difficult to

identify current health problems and outcomes. In a rural community where DM

related mortality is higher than the state average (Merced County Department of

Public Health, 2012), it is important to understand how DM is managed across all

populations. Prevention of both acute and long term complications of DM is largely

dependent on an individual’s understanding and management of disease and

interactions with the healthcare system. Currently, there is no data available on Mien

self management behaviors and understanding of DM. In order to help this

population have better health outcomes, more knowledge is needed about current

beliefs, behaviors, and healthcare practices. The purpose of this study is to explore

basic healthcare practices and understanding of DM in older Mien adults. This study

will review the disparities in healthcare among Asian Americans, the history and

migration of the Mien to the U.S., and discuss the role of nursing in health promotion

and the management of DM. Qualitative research methods were used to explore

participants’ understanding of their disease with the primary goal of expanding the

6

knowledge for healthcare practitioners and identifying areas for interventions to

improve health outcomes in this group.

7

CHAPTER II

REVIEW OF THE LITERATURE

The World Health Organization (WHO) reports that chronic diseases

are responsible for 68% of the worlds’ deaths in 2012 (2014). The WHO has

identified four major groups of chronic diseases: (a) cardiovascular diseases such as

heart attacks and strokes, (b) respiratory diseases such as asthma, (c) cancer, and (d)

diabetes (DM). Chronic diseases are preventable by modifying risk factors through

interventions aimed to change behaviors such as tobacco use, unhealthy diets, and

physical inactivity. Chronic disease treatments and associated costs can propel

individuals into poverty and decrease productivity, undermining conditions needed

for sustainable development in many countries (World Health Organization, 2014).

Chronic diseases are more prevalent in developed countries such as the United States

(U.S.) where some of the most advanced healthcare technology is available. This

chapter will briefly review the shift of U.S. healthcare systems from acute care to

primary care; describe the Chronic Care Model, an effective framework for

reorganizing healthcare to manage chronic diseases; review the little that is known

about the Iu Mien (Mien), and review the role of nursing in DM.

In the U.S., 117 million people have one or more chronic health conditions

with 86% of U.S. healthcare dollars being spent on chronic medical conditions

(Centers for Disease Control and Prevention, 2015b). With longer lifespans and an

increasing population of older adults, the Institute of Medicine’s (IOM) report,

8

Crossing the quality chasm: A new health system for the 21st century, recognized the

need for a redesign of the healthcare system to meet the challenges of caring for

chronic diseases (2001). The IOM made recommendations for a healthcare delivery

system focused on the delivery of safe, effective, timely, patient-centered, efficient,

and equitable care (2001). The high costs and challenges of managing chronic

diseases have led to a paradigm shift in the provision of healthcare in the U.S.

Previously, healthcare primarily focused on treating acute life threatening medical

conditions. Current shifts in healthcare policy and changes in reimbursements are

now focused on the prevention of complications and exacerbations of chronic

diseases in the community setting (Patient Protection and Affordable Care Act, 2010).

The Chronic Care Model

The Chronic Care Model (CCM) provides a framework for a comprehensive

system to provide high quality care for people with chronic diseases (Wagner, 1998).

The CCM was created out of the realization that patients with chronic diseases

needed regular, planned interactions in the primary care setting with a focus on

prevention of complications and exacerbations (Wagner, 1998). It outlines methods

to provide support for both healthcare providers and patients in the management of

chronic disease through six key elements: (a) Health systems, (b) Delivery system

design, (c) Clinical information systems, (d) Self-management support, (e)

Community resources and policies, and (f) Decision support (Wagner, 1998). The

CCM was later modified into the Care Model by Wagner and colleagues at the

MacColl Center for Healthcare Innovation (2002). The Care Model (Figure 1) added

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recommendations from the IOM 2001 report, which includes care that is safe, patient

centered, timely and efficient, evidence based, and well coordinated (MacColl Center

for Healthcare Innovation, 2002). The CCM is a blueprint to improve health

outcomes through integration of better patient self management, and healthcare

provider support, meaningful use of evidence based guidelines in clinical informatics,

and effective utilization of community resources.

Figure 1. The Care Model (reprinted with permission from MacColl Center

for Healthcare Innovations, 2002, see Appendix A).

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Listed below are the bulleted points of the CCM framework.

Health systems should promote a culture of safety and quality patient care

and move towards a proactive approach (prevention). To decrease fragmented

care, organizations should prioritize chronic diseases, facilitate

communication, and initiate care coordination.

Delivery system designs should include planned regular visits and follow up

for patients. All members of the primary care team should have defined roles

and tasks. Case management should be provided for complex patients and

care should be culturally appropriate.

Clinical information systems should be used to organize patient and

population data to facilitate care and make communication between different

care providers easier. Systems should be designed that can monitor the

performance and provide feedback for the care team for quality improvement

processes as well as provide reminders for evidence based care.

Self management support is crucial to empower the patient to act as the

principle in managing his or her disease. This includes strategies for patients

to manage their health through problem solving, action planning, and

acquiring skills to self manage and linking them to community resources. It

differs from the traditional patient education which offers information and

technical skills and moves towards an informed, active participant involved in

his or her own care.

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Community resources and health policies need to focus on preventative and

quality care, which includes reimbursement modalities.

Decision support includes the integration of evidence based clinical

guidelines in the management of chronic illnesses (Bodenheimer, Lorig,

Holman, & Grumbach, 2002; Bodenheimer, Wagner, & Grumach, 2002a;

Bodenheimer, Wagner, & Grumach, 2002b; Wagner, 1998; Wagner et al.,

2001).

Diabetes and the Chronic Care Model

The American Diabetes Association’s (ADA) recommendations incorporate

all six elements of the CCM into its standards of care (2015). Diabetes self-

management education (DSME) and diabetes self-management support (DSMS) are

recommended to provide individuals with the problem solving skills and knowledge

to be active in caring for oneself. Both DSME and DSMS are patient centered with

individual’s needs, goals, capacity, and experiences driving the process. Both DSME

and DSMS address psychosocial issues and support. Strategies for improving DM

care include: changing the system of healthcare delivery by decreasing fragmentation

in care coordination; aligning reimbursement strategies to reward high quality care

rather than visit based billing; supporting patient behavior changes through lifestyle

modifications; enhancing health team behaviors to address barriers to care; and

integrating evidenced-based guidelines in practice (ADA, 2015).

Diabetic interventions using one or more of the CCM components have been

found to be effective at improving health outcomes. A systematic review of the use

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of CCM elements in DM found that many elements were incorporated into healthcare

systems with good outcomes such as reductions in hemoglobin A1c (hbA1c) and

improved foot care (Stellefson, Dipnarine, & Stopka, 2013). Interventions ranged

from obtaining support from governing boards of health systems, using automated

telephone calls to remind patients, health registries, training healthcare providers on

evidenced based guidelines, and the implementation of diabetes days for some

primary care offices to improve patient outcomes. Delivery system redesign was

identified as one of the most important strategies for incorporating DSME by

addressing accessibility to DSME classes. However, few studies looked at

community resources and healthcare policies and their effects on improving DM

outcomes highlighting the need for growth in community resource partnerships

(Stellefson et al., 2013).

Population of Interest

The population known as the Iu Mien (Mien) in the U.S. and Yao in Asia

lived in isolation in the hills of Laos. Most were subsistence farmers and had limited

access to education and healthcare (Moore-Howard, 1989). As refugees with poor

education and socioeconomic means, their experience and integration into U.S.

differs vastly from more recognized Asian groups such as the Chinese, Koreans, and

Japanese. The Mien are often grouped together with other Laotian refugees or

mistaken for the Hmong. Both the Hmong and Mien share similar histories and had

limited contact with Western society and medicine until the 1970’s. Thus the Hmong

13

is the most comparable group for examining phenomena in the Mien when no data is

available.

Historical Background

The earliest references to the Mien places them in the Chinese provinces of

Hunan, Hubei, Jiangxi, and Anhui between the 5th and 8th century before Christ (B.C.)

(MacDonald, 1997). Although there is controversy regarding the Mien’s first

appearance in the written history of China, there is a general consensus that the Mien

resisted taxation during the Han Dynasty (221 B.C.-A.D. 220) and had a tumultuous

relationship with the government of China for centuries. Centuries of revolt and

rebellion resulted in the Mien losing their land and migrating to the mountainous

regions of southern China and Southeast Asia. Despite the extensive migration of the

Mien throughout Asia, scholars note that the Mien have been able to maintain a

strong degree of cultural identity (MacDonald, 1997). The Mien throughout Asia are

identified by four common traits:

(1) A common descent from a totemic ancestor known as Bienh Hungh (Pan

Wang in Chinese); (2) a restricted literacy in Chinese characters with which

they write traditional forms of literature and religious texts; (3) a syncretic

religion combining ancient Chinese Taoist rituals, animistic beliefs, and

ancestor worship; and (4) a long legalistic relationship to the majority cultures

of the countries in which they lived (MacDonald, 1997, p. 15).

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Secret War in Laos

In the 1970’s, the U.S. became actively involved in preventing the spread of

Communism to the area formerly known as Indochina (Vietnam, Cambodia, and

Laos) with military troops deployed to Vietnam. To further the efforts of South

Vietnam against communist forces, the Central Intelligence Agency (CIA) proposed

to use native guerilla fighters in Laos (Leary, 2007). The Mien fought as a part of

Hmong General Vang Pao’s Armée Clandestine trained to disrupt supply lines and

gather intelligence. With the fall of the U.S. backed Royal Lao government to the

Pathet Lao, many Mien that served in the Royal Lao military or aided the CIA were

persecuted by the new regime. Many fled on foot to Thailand where they applied for

asylum and permanent resettlement to other countries (MacDonald, 1997).

Refugee Health

From 1975 to the 1980s, many Southeast Asians were admitted to the U.S.

under refugee status, spurring research about their care and integration into society.

The plight of a refugee differs from that of immigrants moving for socioeconomic or

family reasons. The 1951 Refugee Convention defined a refugee as the following:

…owing to well-founded fear of being persecuted for reasons of race,

religion, nationality, membership of a particular social group or political

opinion, is outside the country of his nationality and is unable or, owing to

such fear, is unwilling to avail himself of the protection of that country; or

who, not having a nationality and being outside the country of his former

15

habitual residence as a result of such events, is unable or, owing to such fear,

is unwilling to return to it. (United Nations, 1951, Article I, section 2).

Many Southeast Asian refugees experienced physical and emotional trauma from

war, relocation from their country of origin, and life in the settlement camps of

Thailand. These experiences include torture, malnutrition, and forced abandonment

of home, belongings, and family members. Many of the Mien faced interrogations,

threats, and abduction of young men into the Communist armies (Moore &

Boehnlein, 1991). Men were forced to flee ahead of their wives and families since

they were in the most imminent danger, leaving behind women, children, and the

elderly to make the dangerous trek to Thailand on their own (MacDonald, 1997).

Crossing the Mekong River held its own dangers with Thai pirates and heavy bribes.

Those who made it into the refugee camps faced limited food, water, and unsanitary

conditions. Additionally, many rumors ran throughout the camps about Americans:

Americans were cannibals (Moore & Boehnlein, 1991) and no Mien would be safe

from scientific experiments (MacDonald, 1997). Many Mien waited in the refugee

camps from one to five years before emigrating to the U.S. Only families that

actively assisted the U.S. were allowed admittance. Other families resettled in France

and Canada (MacDonald, 1997).

In the aftermath of resettlement, refugees continue to experience post

migration challenges such as cultural and language barriers, loss of cultural identity,

acculturative stress, and discrimination. Their experiences are associated with high

levels of posttraumatic stress disorder (PTSD), anxiety, and depression (Nicholson,

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1997). Southeast Asian refugees with PTSD were found to be less engaged in

maintaining cultural tradition and ties, tended to express more anger, and were

usually dependent on public assistance (Abe, Zane, & Chun, 1994). Higher trauma

scores have been associated with increase age, higher prevalence of chronic diseases

such as hypertension and DM, and decreased access to healthcare (Kinzie et al., 2008;

Wagner et al., 2013). Common health problems and conditions among refugees are

mental health (adjustment disorder, depression/anxiety, PTSD, social isolation), pain,

and undiagnosed chronic conditions (anemia, asthma, DM, hypertension, chronic

obstructive pulmonary disease, Vitamin D deficiency, dyslipidemia) rather than

infectious diseases such as tuberculosis (Eckstein, 2011). Evidence also suggest that

the longer refugees stay in the U.S., the more at risk they are for DM due to changes

in diet, exercise, lifestyles, and lack of social support associated with acculturation

(Garcia Rios, & Rodriguez, 2008; Huh, Prause, & Dooley, 2008; Oza-Frank,

Stephenson, & Venkat Narayan, 2011).

Healthcare Use

Among Southeast Asian refugees, the use of Western healthcare varied.

Among Cambodians, Vietnamese, Laotians, Chinese Vietnamese, and Hmong, the

Hmong were the least likely to utilize Western healthcare (Chung & Lin, 1994). The

most significant predictors of utilizing Western healthcare among all five groups were

educational level, English proficiency, and age. Women compared to men across all

five Asian subgroups tend to use traditional healthcare methods (Chung & Lin, 1994).

Fifty-eight percent of Southeast Asian patients (Cambodian, Lao, Mien, and ethnic

17

Chinese) at an Oregon refugee clinic were found to use traditional healthcare

practices, although the prevalence and type of traditional method varied among the

four ethnic groups surveyed (Buchwald, Hooton, & Panwala, 1992).

Mien refugees reported used cupping and moxibustion—two Eastern

traditional practices that leave marks on the skin—more than any other groups

(Buchwald et al., 1992). Religion was found to heavily influence the healthcare

behaviors and medical beliefs of a small Mien community in California (Gilman,

Justice, Saepharn, & Charles, 1992). Many of the Mien sought treatment from

physicians for their symptoms and reported taking Western and Eastern medications

for 72% of their illness. The Mien purchased over the counter treatment including

several medications imported from Thailand, Hong Kong, and Canada. Medications

that should be available only by prescription such as penicillin were easily accessible

to the Mien in local Asian markets (Gilman et al., 1992).

Health Literacy

Health literacy is one of the largest barriers to healthcare. Health literacy is

defined as an individual’s ability to process and understand health information to

make informed decisions about his or her healthcare needs (IOM, 2004). Language,

culture, and education are key factors in determining an individual’s health literacy.

United States (U.S.) Census data shows that 38.4% of Laotians (comprised of the

many ethnic groups of Laos such as Laotian, Iu Mien, Khmu, Tai Dam, and Tai Leu)

have poor English-speaking skills compared to the overall aggregate Asian population

of 31.9% and the general U.S. population of 8.7% (Southeast Asia Resource Action

18

Center, 2011). Thirty-seven percent of Hmong respondents report speaking English

less than “very well.”

The Hmong share similar emigration experiences and exposure to Western

culture as the Mien; however, due to their large numbers the U.S. Census treats the

Hmong as a separate category. Educational levels also differ with 67.5% of Laotians

and 64.6% of Hmong completing a high school level education compared to the

overall Asian and U.S. population of 85.9% and 85.6% respectively (Southeast Asia

Resource Action Center, 2011).

Poor health literacy results in poor health outcomes. Asians with limited

English proficiency reported fewer glucose and feet checks compared to non-

Hispanic whites (Choi, Lee, & Rush, 2011). The lack of translators and healthcare

information in languages specific to the many different Asian ethnic groups

contribute to poor outcomes among Asian Americans (Choi et al., 2011). Perez and

Cha (2007) found that lack of equivalent terminology regarding physiology, anatomy,

medical terms, and health beliefs were barriers for Hmong patients. Johnson’s study

of Hmong focus groups highlighted the complexity of the language barrier:

“Explaining about a malfunctioning kidney would require that the interpreter use a

lengthy paragraph to say what could be said with one word in the English language”

(2003, p 127). As a group, Southeast Asians have been described in literature as the

passive obedient patient (Uba, 1992). Southeast Asians view health professionals as

the medical authority and either through cultural restraints, fear of embarrassment,

fear or misunderstanding of the legal system, will often not divulge information or

19

further question the authority person (Uba, 1992). In their work treating psychiatric

disorders in the Mien, Moore and Boehnlein (1991) found that the Mien patient will

avoid addressing issues such as ineffective medications to show respect and protect

the physician’s honor. These cultural behaviors and perception of medical authority

make it difficult for meaningful patient and primary care provider interactions.

Traditional Healthcare Beliefs and Practices

Traditional healthcare practices among Southeast Asians include the following

practices: coining, cupping, pinching, moxibustion, and healing ceremonies

(Buchwald, Hooton, & Panwala, 1992). Coining is done by stroking the skin firmly

with the edge of the coin resulting in red streaks on the skin. It is done to “scrape”

away the illness or disease. Pinching uses pressure applied between the fingers to the

skin. Cupping uses a cup with burning paper placed on the skin. As the paper burns

off and the cup cools, it causes circular, red marks to appear on the skin.

Moxibustion is the creation of small, superficial burns on the surface of the skins with

incense, candles, or herbs. Traditional pinching, cupping, and moxibustion are to

improve qi (life energy in Chinese) circulation in the body. A traditional healer or a

shaman performs healing ceremonies. These rituals target the source of the illness in

accordance with each ethnic group’s beliefs.

Mien patients were found to use moxibustion, cupping, and healing

ceremonies (Buchwald et al., 1992). Moxibustion, cupping, home remedies, and

herbal medications were used for illnesses attributed to physical causes whereas

healing ceremonies were used for ailments with a spiritual cause (Gilman et al.,

20

1992). These ceremonies collectively called sipv mienv are performed for a variety of

reasons including warding off evil spirits and ensuring good health. The ceremonies

also include spiritual money and meal offerings to the spirits or ancestors by

slaughtering and preparing feasts with a chicken, pig, or cow.

The Mien believe that some physical symptoms and conditions are caused by

angry spirits or soul fright and utilize a combination of Western medicine to cure the

physical symptoms and sipv mienv to address the spiritual cause. In addition to

physical ailments, offending the spirits and ancestors can also cause bad luck. Many

Mien believed that the inability to properly bury loved ones that died fleeing to the

refugee camps has created angry spirits (MacDonald, 1997). These spirits can be

contacted through healing rituals with priests. However, the time and cost involved

in finding both herbal remedies and arranging sipv mienv were found to be barriers to

traditional healthcare practices in the U.S. (Gilman et al., 1992; MacDonald, 1997).

These barriers prompted many Mien to convert to Christianity (MacDonald, 1997).

Family and Social Structure

Traditional Mien culture places the extended family as the nucleus of the

social unit, often with three generations of family members in one household

(MacDonald, 1997). Large households ensured that there were enough sons or

daughters to care for the house owner in old age and to care for his or her spirit in the

afterlife. Larger households could also accumulate wealth easier and quicker as

income was shared. Filial duty and mutual dependence between parents and children

are traditional values. During resettlement, many Mien families would move into a

21

single apartment complex with multiple vacancies to recreate a village like

environment since housing occupancy restrictions did not permit large numbers

(MacDonald, 1997). Current adaptations include family members purchasing and

living in homes near each other to provide continued support.

Mien society is patrilineal with women placed lower in the hierarchy than men

of the same generation with the exception of the elderly who are respected without

differentiating between genders. Traditional gender roles placed child rearing,

cooking, gardening, and sewing as women’s work whereas men hunted, fished, and

farmed. Children are adored and well cared for by their grandparents while the

parents worked. Adoption practices for couples that could not have children are

widely accepted in Mien villages (MacDonald, 1977).

In the process of integrating into the U.S., many of these traditional roles have

weakened. In order for families to be economically viable, many women began

working outside of the home and gained power and independence. Childcare

continued to be the responsibility of the grandparents. With both parents out of the

home and the children in school, parents were not able to spend time passing their

own heritage and language to their children. The different levels of acculturation

have resulted in intergenerational conflict as roles have changed (Ying & Chao,

1996). The elderly became dependent and lost social status while children who were

able to learn English easier take on adult roles and responsibilities to help the family

navigate the American system. Western values of independence taught to children at

22

school conflicted with traditional cultural values of family, group identity, and

ancestral relationships (MacDonald, 1997; Ying & Chao, 1996).

Education

For centuries, the Mien relied on oral traditions to communicate and pass

down stories. The Mien have three distinct languages with different functions: the

daily spoken vernacular, literary language, and the ritual language. The literary and

ritual languages are forms of Chinese (MacDonald, 1997). Traditionally, only men

were afforded the opportunity to learn to read and write basic Chinese characters as a

way to record family data. Priests as part of their duty in maintaining religious and

historical scripts had more extensive training in the ritual and literary languages. The

economics of subsistence farming did not allow for many Mien to send their children

to school in the lowland communities of Laos. During the Indochinese war, the CIA

selected men for specialized training at a CIA-run academy in Thailand. These men

learned English and acted as air controllers for American pilots (MacDonald, 1997).

Most Mien became exposed to English script as part of the educational

programs in the refugee camps in Thailand. Literacy programs were instituted to help

the process of acculturation. Upon arriving to the U.S., many stressors such as the

need for financial stability, lack of childcare and transportation made it difficult for

many Mien to get further education.

Role of Nursing

The IOM’s The Future of Nursing: Leading Change, Advancing Health

(2011) called for nurses to perform to the fullest extent of their training and potential.

23

Nurses, as the largest group of healthcare professionals, are uniquely positioned to

effect changes in many settings. In an evolving healthcare system responsive to

individual needs and patient-centered care, nurses need to be full partners, “taking

responsibility for identifying problems and areas of waste, devising and implementing

a plan for improvement, tracking improvement over time, and making necessary

adjustment to realize established goals” (IOM, 2011, p. 32). Nurses need to take an

active leadership role in shaping and directing the revised healthcare system,

initiating policy, advancing research, using technology, and promoting evidenced

based care (IOM, 2011). Nurses’ holistic discipline lends itself to improving patient

interactions; care can truly be designed to meet the needs and lifestyle of the patient.

Bodenheimer, MacGregor, and Stothart (2005) argues that nurses are instrumental to

managing chronic diseases and posits better communication between the nurse and

patient as the rationale for positive interactions and outcomes. Traditional strengths

in nursing such as disease education, health promotion, and therapeutic

communication align with the transformation in healthcare to focus on chronic illness

management and patient centered care. Nursing professionals must expand their roles

in health promotion and prevention across all settings and to all populations.

There is conflicting information about the effectiveness of nurses in the

management of DM. A Cochrane Review found nurses to play a significant role in

leading patient centered interventions (Renders et al., 2000). Nurse led interventions

were found to improve measurable DM markers in the short term (Lew, Nowlin,

Chuun, & Melkus, 2014). Another review found that the involvement of DM nurse

24

specialists had little effect on improving hypoglycemic incidences, hospital

admissions, or quality of life (Loveman, Royle, & Waugh, 2003). Telephone nurse

case management of DM was found to be ineffective at improving hbA1C (Edelman

et al., 2015). These finding suggest that more research is needed to examine the role

of nurses in the management of DM.

The U.S. Mien population is facing chronic diseases that have not been

recognized previously in Laos. Literature regarding the health conditions of this

ethnic group is sparse. The majority of the literature documenting and providing

information about Mien society, culture, and identity has been conducted by other

disciplines such as anthropology (MacDonald, 1977). There is a lack of knowledge

of how best to serve this population in the management of DM. Research that

includes ethnic minorities point to improved outcomes with patient-centered and

culturally appropriate interventions (Hawthorne, Robles, Cannings-John, & Edwards,

2008).

Rising costs in healthcare and poor outcomes have led to systems changes in

healthcare to focus on health promotion, prevention, and management of chronic

diseases. The CCM posits that meaningful interactions are possible in the

management of chronic diseases when both patient and healthcare provider have the

knowledge, support, and resources on both local and systemic levels. Nursing

professionals, with their holistic view of the patient experience, should lead the way

in exploring solutions for improving the patient experience, researching and

disseminating information for all the healthcare team to utilize, and affecting policy

25

to increase better health outcomes for all. An initial step within the Mien population

is to explore recent practices of the Mien and their management of DM. In addition,

it is crucial to understand how acculturation has affected health beliefs, practices, and

behaviors surrounding the care of DM in the home.

26

CHAPTER III

METHODOLOGY

This exploratory study used a qualitative design method to explore the

healthcare beliefs and diabetes (DM) self-care management behaviors of older Iu

Mien (Mien) adults. Qualitative content analysis is an appropriate methodology when

little is known about the subject matter or when knowledge is fragmented (Elo &

Kyngäs, 2007). It allows inferences to be made from the data to their context

(Krippendorf, 1989). The goal of content analysis is to condense data into themes

that describe the phenomena (Elo & Kyngäs, 2007).

Institutional Review Board and Human Participants

University institutional review board (UIRB) approval and informed consent

was obtained from all participants in the study. A copy of the UIRB approval letter is

available in appendix B. The UIRB approved participant consent form is available in

appendix C. Consents were read to participants in the language of their choosing

(English or Mien). The author is fluent in Mien.

Subject Recruitment

A convenience sampling size of n=5 participants were recruited by snowball

sampling. Key informants within the Mien community in a rural community in the

United States (U.S.) were asked to communicate the information regarding the

research by word-of-mouth. Recruitment flyers (see Appendix D) were posted in

various community locations such as Asian food markets, health clinics, churches,

27

and community gathering areas and the author spoke with various community

members.

An initial meeting prior to the interview was arranged with each participant.

During the meeting, study parameters were discussed and informed consent obtained.

To build trust, the initial visit was done with the referring community member

present. Mien social etiquette and customs were observed including but not limited to

accepting offerings of food and drink, polite conversation, and inquiries about the

health of various family members. Participants were given a $10 gift card for their

participation at the end of the interview.

Inclusion Criteria

Participants were selected based on a self-reported diagnosis of DM.

Participants had to be of Mien ethnicity, age fifty or older, and born outside of the

U.S. The cut off age of 50 was selected because the vast majority of Southeast Asian

refugees that settled in the U.S. under the Indochinese Refugee Assistance Program

and the Refugee Act of 1980 were under the age of 34 (U.S. Department of Health

and Human Services, 1982). In addition, the greatest number of people with DM

worldwide is between the age of 40 and 59 (International Diabetes Federation, 2013).

Participants had to speak either Mien or English and be willing to participate in a

face-to-face interview. Participants were excluded if diagnosed with gestational

diabetes, have hearing or speaking impairments despite the use of assistive

communication devices, or unable to participate in a face-to-face interview.

28

Procedure

The participants were given a copy of informed consent and it was read in the

language of their choice. Once informed consent was obtained, a meeting time was

arranged to interview the participant in his or her home. The home setting was

integral to the goal of observing self-care behaviors. Any family member that took

part in the participant’s care was allowed to participate in the interview. A semi-

structured questionnaire tool (see Appendix E) created with input from experienced

researchers was used. Interviews were digitally recorded with consent.

Measurements

Weight was obtained by the following procedure:

The scale is placed on a flat, even, non-carpeted surface.

The scale is cleaned with disinfectant wipes and zeroed according to

manufacturer’s instructions.

Participant removes shoes and socks and any bulky outerwear clothing such as

jackets and scarves.

Participant stands on the scale until weight is displayed in kilograms and

recorded.

Height was obtained by the following procedure:

Participant removes shoes and hat.

Participant stands on even, non-carpeted surface with back to the wall and

heels touching the wall.

29

A straight edge level is placed on the top of the participant’s head; adjust until

level is perpendicular to the ground.

The bottom edge of the level is marked with a piece of tape.

The distance from the floor to the bottom edge of the tape is measured with a

measuring tape.

Data were recorded in centimeters.

Body mass index (BMI) was calculated using the online tool from the Centers

for Disease Control and Prevention (2015a). Participants were asked to demonstrate

a DM self care behavior in the home such as foot care, glucometer use, meal

planning, or medication administration.

Debriefing

After the interview was completed, observational notes were reviewed to

confirm the accuracy of the information obtained. Participants were asked what they

felt was the most important thing they shared and to review key points identified as

salient. The debriefings were used to refine questions for subsequent interviews.

Translation

Audio recordings were transcribed verbatim to English. For idiomatic

expressions or vocabulary without a direct English translation, the author consulted

with a Mien community member to derive the meaning of the sentence within the

context of the paragraph. A consensus was reached regarding the English translation

of the expression while preserving the Mien meaning.

30

Data Analysis

Inductive qualitative content analysis was used to encode the data and

organize codes into categories as they emerged (Elo & Kyngäs, 2007). Data were

read multiple times to achieve emersion. Open coding was used to analyze each

sentence. Key words were the unit of analysis. Key words were identified and

compared, context interpretations were made and grouped into categories (Elo &

Kyngäs, 2007). Subcategories were grouped into main categories until no further

abstraction could be made.

The author worked with a researcher with expertise in qualitative and

quantitative data. Both author and researcher worked independently to identify key

words. Key words were categorized into groups with similar themes. Themes were

compared and a consensus was reached. Participant feedback related to the themes

was obtained.

31

CHAPTER IV

FINDINGS

Demographics

All participants (n=5) were first generation Iu Mien (Mien) refugees with self

reported diabetes mellitus II (DM). Participant A produced medical records from

2012 with DM listed in the history and physical and a hemoglobin A1C (hbA1C) of

10.9. Participants B, C, and E all had family members that confirmed the diagnosis

of DM. The mean age of the participants was 60.8 years with a range of 55-68. The

average years of residence in the United States (U.S.) was 33.8 years. Three

participants were male, two female. Four out of the five participants received some

sort of education in the U.S. with two of the males receiving 4-5 years of education—

mostly English as a second language and vocational training courses as part of

California’s public assistance program. Four of the participants reported the ability to

read and write English and two of the participants, D and E, were able to read and

write “some” in the Unified Mien Script. Two participants preferred the interview in

Mien and three English. All were married. Participant A’s spouse was present and

participated in the interview. Participant B and C’s spouses were present, but did not

contribute to the interview discussions. All of the participants practiced the

traditional religion. Two of the participants converted back to the traditional religion

from Christianity.

32

All five participants had co-existing health conditions in addition to DM as

shown in Table 1. The mean Body Mass Index (BMI) was 38 with four participants

Table 1 Health Data

Age Body Mass Index Medical History Medication RegimenMales Kg/m2

A 56 21.8 StrokeHypertensionRetinopathyNeuropathyHyperthyroidism

MetoprololCilostazolHydroclorothiazideGlipizideProbenecidLisinoprilClopidogrelLevothyroxineVitamin B12LovastatinAllopurinolInsulin glargine

C 63 46.4 Heart failureObstructive sleep apneaMetastatic cancerHypertensionArthritisPancytopeniaChronic obstructivepulmonary diseasePneumonia

MetforminCarvedilolValsartanHydrochlorothiazidePotassiumAspirinFenofibrateSimvastatinHydrodone/acetaminophenFluoxetineGlimepirideAtroventFurosemideAzithromycin

E 55 42.7 Cardiovascular diseaseMyocardial infarctionHypertensionHigh cholesterolChest painPercutaneous coronaryintervention with stent

MetforminGlyburideAspirinSimvastatinMetoprololNitroglycerinClopidgrelLisinoprilAmlodipineIsosorbide mononitrateFamotidine

FemaleB 68 40.4 Hypertension

HyperlipidemiaHigh cholesterolGastroesophageal refluxdiseaseDepression

MetforminProtonixAspirinFluoxetineMetoprololDiltiazemHydrochlorothiazideTriamtereneAlbuterolSimvastatinGlyburide

D 62 39 Hypertension MetforminSpironolactoneHydrocodone/acetaminophen

33

meeting the Centers for Disease Control and Prevention’s definition for obesity

(2015a). Participants had a mean of 10.2 medications prescribed. Only one

participant (age 62) in this study had three prescription medications. All the other

participants (age 56-68) reported taking 11 to 14 medications.

The participants in this study expressed views about their DM and experiences

with healthcare that centered on the following themes: cultural barriers, mistrust, and

family support. Cultural barriers led to feelings of mistrust when interacting and

utilizing the Western healthcare system. Strong family support helped to mitigate

both cultural barriers and mistrust (See Figure 2).

Figure 2. Concepts Affecting Productive Western Healthcare Interactions in

Older Iu Mien Adults.

Cultural Barriers

Cultural barriers stemmed from language barriers, attitudes toward illness, and

knowledge gaps. They emerged in the use of the term sweet blood to describe DM,

FamilySupport

MistrustCulturalBarriers

34

the perception that it was not important, knowledge gaps regarding disease process,

and the inconsistency in how it was managed.

“Sweet Blood”

The term sweet blood encapsulates the concept of a language barrier that was

prevalent in the data. Participants’ understanding of DM was hindered by language

barriers as a result of the lack of terminology to describe pathophysiology and

anatomy in DM. Diabetes was translated by the participants as sweet blood as there

was no terminology for DM in the Mien language:

Participant A: Diabetes…what—what—what can I say? I know exactly. Its

uh—uh—uh, from your—uh—sweet blood is not good. That’s all I can tell.

That’s it.

Researcher: That’s it? Are there Mien words to describe it?

Participant A: No, whatever, diabetes, we have no words to call it. We Mien

say our blood sweet is high. I mean blood is sweet. Sweet blood is not good.

That’ it. That’s what we call diabetes.

Participant E reported that sugar in the blood made it difficult for the blood to travel,

equating it to his understanding of cardiovascular disease. This participant did not

know the terminology for blood vessels. Participants also did not have language to

describe the different types of medical practitioners and used English terms for doctor

and physicians assistant (P.A.).

Due to the lack of terminology, participants often interpreted healthcare

providers’ counseling literally. Participant B and D related the causation of DM to

35

intake of candy; their understanding of DM stemming from the association of

elevated blood glucose with dietary lifestyle modifications recommended by

healthcare providers:

Participant B: I don’t know. I just hear the doctor say my blood is sweet and

told me not to eat candy.

Researcher: Candy? What kind?

Participant B: Candy. The sweet stuff. But I don’t eat that much candy.

Sometimes I eat a little or eat small amounts from grandchildren—they bring

it over. The doctor says to not eat candy, rice, and to exercise.

Researcher: What causes your blood to be sweet? How does it happen?

Participant B: Well—the doctor says not to eat sweet things. L.Y. [daughter-

in-law] says the same thing—it must be the food here.

The concept of carbohydrates was not familiar to any of the participants; rather, it

was the association of sweet tasting things and rice that caused the blood to be sweet.

During one interview for example, a participant was eating spicy beef jerky and was

unaware of the high sugar content in the product.

The ability to communicate with the healthcare provider was important. One

participant chose his healthcare provider based on his ability to understand her:

This doctor, she tries to help, but if we don’t understand, she says it again in

easy words, but she’s India, so sometimes it’s hard to understand her. That is

the one we kept.

36

Participant E described a hospital encounter where she struggled to communicate

with staff:

I pressed the button, there was a voice coming into the room but I didn’t know

what it said—no one came for a very long time. When someone did come, I

pointed to the bathroom. It was cold too. I had to wait til L. Y. or F. H.

[family] or someone to come so I could tell them to tell the people that I was

cold.

Diabetes is Not Important

Diabetes was not viewed as a serious condition by any of the participants

because of the lack of symptoms. Most participants described healthy as being able

to undertake physical activities such as walking, baby sitting, sewing, and harvesting

crops—not the absence of disease. One participant included mental capacity in his

description of good health and another participant described healthy as freedom from

pain, dietary restrictions, medications, and independence from other people. Two

participants described themselves as healthy. Participant A stated:

I can talk. I can walk. Do everything…only when you can’t do things—just

getting old that’s it. Other than that—I’m okay. That in Mien words—I’m in

good health.

Most participants did not think their DM made them sick due to the lack of

identifiable symptoms. One participant described that seeking the treatment of

doctors was something only to be done in extreme cases of illness in Laos, especially

since it required a one to two day journey by foot through the jungle. Similar views

37

were expressed by other participants regarding when to seek medical care. Only one

individual saw his healthcare provider on a regularly scheduled basis. Two

participants had recent hospitalizations involving other comorbid conditions that they

considered more serious than DM. All five participants were asked whether they had

a healing ritual performed in regards to their DM. Four participants did not think DM

warranted a healing ritual, citing that DM did not affect their health greatly. One

participant thought it was an organic condition of the body rather than a spiritual

condition.

Knowledge Gaps

Participants reported symptoms indicative of progressive DM disease such as

neuropathy, but did not attribute the cause to DM. Participant A describes a deer

hunting episode as the reason why his feet became numb. All five participants could

not physically distinguish when their blood sugars were elevated by symptoms alone,

nor did they report experiencing any symptoms outside what they considered their

norm. Participants C, D, and E reported illness associated with other comorbid

conditions. None of them recognized the role that DM play in exacerbating their

comorbid conditions and illnesses such as congestive heart failure, pneumonia,

cellulitis, and chest pain respectively. Knowledge gaps existed between the purpose

of self care behaviors and the prevention of complications as indicated by participant

E’s comment, “All I do is poke it, write down the number. What am I suppose to do

with that number? It’s high—that’s why they gave me medicine.”

38

Managing Diabetes My Way

Diabetes self care behaviors were performed inconsistently for most

participants. Each participant/family unit performed it according to what was

convenient for them. All the participants mentioned self monitoring of blood glucose

(SMBG) as part of their prescribed regimen and oral hypoglycemic agents.

Additionally, Participant A used insulin. Participants A, B, C, and E were on two

medications for DM. Most participants were not consistent in performing SMBG:

participants C and E disliked being “poked” by needles. Participants A, B, C, and E

reported taking their medications whereas participant D did not take the oral

hypoglycemic agent due to side effects that interfered with her ability to work.

The participants did not share their regimen adjustment or concerns with their

healthcare providers. Participant A recognized signs of hypoglycemia and the

subsequent need for assessing blood glucose. His insulin was recently increased from

16 units to 20 units. Participant A also stated that a blood glucose of 70 was too low

for him. However, his concerns regarding lowering his blood sugar was never

discussed with the healthcare provider and he planned on waiting to discuss his

hypoglycemic episodes until his next follow up appointment.

Mistrust

Cultural barriers and ineffective communication lead to the feelings of

mistrust for the participants. Mistrust took many forms. Participant E reported that

his student doctors spoke to each other, but not to him. He felt excluded from

39

discussions. He viewed his healthcare providers as students—“young doctors” and

therefore not real doctors. This led to perceptions of inequality of treatment.

Participant A and his family described incidences of mistrust with interpreters.

They expressed concerns that healthcare providers were not aware when interpreters

were giving out wrong information: “The doctor says one thing and they [interpreter]

say something else” and “… he [interpreter] doesn’t know how to speak any Laos or

Mien, but he pretends he does.” In this instance, the healthcare providers are also

perceived as being deceived by the interpreter. One participant recounted an incident

involving the hospitalization of a family member requiring surgery and viewed the

hospital provided interpreter as working for the hospital and the physician rather than

being there to help them. Participant C described a time when he was at an

appointment with his family support person:

I asked what was cancer and the doctor talked for a while. The person—she

just said, “You have cancer, it’s bad and you can die.” That was all she said.

That’s when C. [daughter] got mad and talked over her to the doctor.

Participant B chose not to go to appointments if a family member was not with her.

Family Support

The concept of family support emerged as a theme for participants. All the

participants had varied levels of assistance with their healthcare from a family

member. Many of the participants relied on family members to help with

appointments, medical interpretation, and meal preparation. Those who were more

independent acquired their skills and understanding from family members.

40

Participant B and C were dependent on family members to provide routine SMBG

care, assistance with medications, and appointments. Participant A shared

responsibility with his family member, but was capable of performing SMBG on his

own. The interaction between participant A and his family demonstrate a supportive

relationship:

Participant: Hmmmm. I don’t know. I just take them [medications]. But

these—these—I know—I don’t feel dizzy with them. Or it could be this one

too. This one is new, they gave it for—ah—for—my neck surgery for—for…

Family: Not this one, you’ve been on this one for a while.

Participant: Is it this one?

Family: You said it’s the one for the neck surgery. The one you’ll have to

take always. It’s the newest one of your medicines.

Participant A self-administered his insulin nightly, but required assistance from his

spouse when he needed to rotate injections to the left abdomen. Participant D had a

family member check her blood pressure. Participant E was the most independent,

but relied on his family member to understand DM. He had a daughter also

diagnosed with DM. Participant B was the most dependent on family members for

her care—a family member assisted with medication, accompanied her to

appointments, and performed her SMBG.

Family also dictated care practices: participant E did not use traditional

practice of consulting the spirits in his home in deference to his wife’s religion:

Researcher: Do you do healing rituals?

41

Participant E: No. I’ll go to them, to the eating part, but I don’t do my own.

My wife doesn’t like it. I used to be Christian too, but then I got a heart attack

and I switched back.

Researcher: You switched back because of the heart attack.

Participant E: My ex wife was Christian and she wanted me to be Christian so

that’s why I did it. After we divorced, I went back…I left the church, but my

wife [current spouse] is Christian. The sipv mienv—sometimes they help. If

I need to do it—I do it at my brother’s house.

The majority of participants reported positive family interactions. There was usually

one identifiable key family member that took on the bulk of the caregiving role. Only

one participant lived in the same physical home as his family support person.

42

CHAPTER V

DISCUSSION

Comparison to the General Population

The complexity of care was evident throughout the participant’s responses.

From polypharmacy to lifestyle changes—there appeared to be large gaps in

understanding and performing of self care behaviors. This highlights the difficulty in

managing diabetes (DM) when cultural barriers in the form of language, knowledge

gaps, attitudes towards Western healthcare, and mistrust color the Iu Mien (Mien)

health experience.

The management of DM is often compounded by the complexity of managing

multiple chronic disease conditions at the same time. Diabetic disease progression

and complications such as end stage renal disease (ESRD), myocardial infarction

(MI), stroke, and heart failure (HF) varied in the participants. Although this study

specifically recruited Mien participants with DM, all of the participants had at least

one other chronic disease. The most common triad of chronic diseases among United

States (U.S.) adults is hypertension, arthritis, and DM (Ward & Schiller, 2013).

Although only one Mien participant reported arthritis, all participants reported having

hypertension. Similarly, 57% of Hmong diabetics reported having hypertension

(Johnson, 1995). A study looking at a large patient population in northern California

compared the risk of complications (MI, ESRD, stroke, HF, and nontraumatic lower

extremities amputations) in Chinese, Japanese, South Asian, Filipino, and Pacific

43

Islander with African American, Latino, and White participants and found large

variations within the Asian groups’ risk for disease complications compared to White

participants (Kanaya et al., 2011) highlighting the need for studies in disaggregate

Asian subgroups.

Cultural beliefs about medicine and health influenced how closely individuals

followed treatment regimens. Self monitoring of blood glucose (SMBG) was

inconsistent and infrequent by all participants. This is similar to findings from the

2009 California Health Interview Survey that reported that Asians compared to non-

Hispanic whites, African Americans, Hispanics, and American Indian/Alaskan

Natives were the least likely to perform SMBG (Kim, Ford, Chiriboga, & Sorkin,

2012). Previous studies found that the Mien have cultural beliefs that influence

attitudes to blood and invasive procedures (Moore & Behnlein, 1991). Although

most Mien have become comfortable with lab draws when necessary, frequent draws

similar to the lab work in the hospital setting and large amounts of blood drawn are

causes for concern.

Obesity

Obesity is a risk factor for many chronic diseases. Of interest was the fact that

four of the five participants were obese or morbidly obese. This surpasses the

prevalence of obesity found in in the general U.S. adult population of 34.9% (Ogden,

Carroll, Kit, & Flegal, 2014). In the Asian American population, the risk of having

DM is higher even after adjusting for body mass index (BMI) prompting the

American Diabetes Association to recommend lowering the BMI screening threshold

44

of 25 kg/m2 to 23 kg/m2 for Asian Americans (2015). Data from the Nurses’ Health

Study showed that for every 5 kilogram of weight gained in Asian women, the risk of

DM increases by 84% compared to 37% for Caucasian women (Shai et al., 2006).

Asians also have a higher body fat percentage per BMI compared to Caucasian

populations internationally (Deurenberg, Deurenberg-Yap, & Guricci, 2002).

Obesity trends may be related to multifactorial causes such as food

deprivation, lifestyle changes, acculturation, and cultural views of body image. Prior

to their arrival to the U.S., the participants in this study were active subsistence

farmers with minimal access to processed foods. They were physically active and

had a diet consisting of regional vegetation, crops, and livestock. Researchers have

hypothesized that food deprivation can lead to overconsumption of foods once

restrictions are lifted (VanEenwyck & Sasbel, 2003). The Mien faced malnutrition

and limited food supplies in the refugee camps. It was not uncommon for parents to

feed insects to their children when food rations were short (M. Saeyang, personal

communication, October 18, 2015). Cultural ideas of beauty and wealth may

contribute to obesity as well. The Mien equate obesity with wealth and health (M.

Saeyang, personal communication, October 18, 2015). Those that could produce

food in excess of their immediate needs were able to stockpile and barter for other

goods. Food that could not be stored or bartered immediately was consumed thus

showcasing wealth and health by the person’s ability to produce larger quantities of

food (M. Saeyang, personal communication, October 18, 2015).

45

Acculturation Effects

It is difficult to tell in the Mien participants whether DM was a pre-existing

condition or developed through the process of acculturation. Acculturation is the

process of adopting the culture, beliefs, and traits of another group (acculturation,

n.d.). Studies of immigrant populations show that immigrants are generally healthier

than the native born population, but over time, this healthy effect disappears as the

immigrants acculturate and lifestyle habits change (Antecol & Bedard, 2006; Cho &

Hummer, 2001; Devlin, Roberts, Okaya, & Moua Xiong, 2006; Frisbie, Cho, &

Hummer, 2001; Jasso, Massey, Rosenzweig, & Smith, 2004; Marmot, Adelstein, &

Bulusu, 1984). Although the Mien arrived to the U.S. as refugees, it can be argued

that selectivity was for the healthiest Mien, able to make the journey from Laos to the

refugee camps of Thailand. This does not preclude the Mien participants from having

chronic diseases such as DM prior to their arrival in the U.S. The International

Diabetes Federation (2013) estimates that South-East Asia region (consisting of India,

Sri Lanka, Bangladesh, Nepal, Mauritius, and Maldives) and Western Pacific Region

(consisting of multiple countries including Australia, New Zealand, China, Thailand,

Cambodia, Fiji, Samoa, Vietnam, and North Korea) account for 60% of all people

with undiagnosed DM. Poor access to healthcare in Laos and the practice of utilizing

doctors for symptomatic illnesses could account for the DM being undiagnosed.

Most of the participants were unaware of the symptoms of DM. The few participants

that were currently aware of symptoms may not have had this knowledge 10-20 years

ago nor accessed the healthcare system until symptoms started. A longitudinal

46

analysis of various Asian populations from the California Men’s Health Study lend

support to the high risk of DM in immigrant Asians compared to U.S. born Asians

(Erber, 2014). Immigrants are exposed to acculturative stress and other risk factors

increasing their risk for DM (Erber, 2014).

Polypharmacy

Polypharmacy is the use of more medications than medically necessary

including medications that are not indicated, therapeutic duplications, or they are

ineffective (Maher, Hanlon, & Hajjar, 2014). Polypharmacy can result in an increase

in adverse drug reaction, medication non adherence, and decreased functional

capacity in older adults (Maher et al., 2014). Without a clinical exam and laboratory

data, it would be difficult to surmise whether the medications were clinically

indicated or not. Polypharmacy is complicated by the ability to understand the

instructions on the medication labels.

Complicated medication regimens are often associated with non-adherence to

medication (Maher et al., 2014). Multiple medications are often prescribed for a

single chronic disease such as cardiovascular disease. As adults develop multiple

chronic diseases, it is very easy for the number of prescribed medications to increase.

Other studies have shown that 29% of adults, age 75 to 85 years, use five or more

prescription drugs regularly and that half of those participants regularly use over-the-

counter medications or supplements additionally (Qato et al., 2008). The use of five

or more medications increases with age (Qato, et al., 2008).

47

The number of drugs prescribed compared to the general population is

concerning due to the relatively young age of the participants and the higher than

average number of prescription medications reported. One possible explanation for

this is the increase in intensity of chronic disease treatment and the number of

comorbid conditions of the participants. Studies in treating psychiatric disorders in

the Mien have shown that certain classes of medications are poorly tolerated or have

ineffective therapeutic effects (Moore & Boehnlein, 1991). This may be the case for

some participants with resulting non-adherence and healthcare providers prescribing

more medications to manage an uncontrolled chronic disease process.

Cultural Barriers and Mistrust

Cultural barriers continue to be significant obstacle to better outcomes in older

Mien adults. Despite their years of residency in the U.S., the participants continue to

struggle with English. Many of these participants arrived to the U.S. as young adults

with young children to care for and did not have time for formal education.

Language is a critical component to health literacy; however, interpreter

services for many Asian languages are not always available. This is compounded by

languages such as the Mien that do not have equivalent terminology for medical

terms including anatomy, physiology, and exposure to concepts of cell and germ

theory prior to settlement in the U.S. Terminology is often borrowed from different

languages: one example is the use of the Thai word mbau waanx for DM in a Mien

dictionary (Purnell, 2012). None of these participants were familiar with this term

since they were not from Thailand and did not have access to healthcare there.

48

There are no standardized national or state interpreter certifications available

for the Mien language (Bureau of Labor Statistics, 2015; National Board of

Certification for Medical Interpreters, 2012). Interpreter services used in locales such

as hospitals under California Health & Safety Code §1259 describe a competent

interpreter as someone with the ability to translate body parts, injuries, and symptoms

fluently in the language in question. However, these are decided by the agency

employing or contracting such persons and the dilemma arises when the language

itself does not have the vocabulary for such body parts. The use of telephone

interpreter services is a common widespread practice, however, it can diminish the

relationship between the patient and the healthcare provider (National Diabetes

Education Program, 2006). One narrative from this study demonstrated that the Mien

are uncomfortable with phone interpreters. There is a lack of face-to-face contact

which is important for creating trust, especially in a culture that had limited access to

communication technology.

Participants continue to have difficulty understanding terminology—even

those that were confident in their English speaking abilities. This parallel findings

from the Cambodian Community Health Behavioral Risk Factor Surveillance which

showed that 76% of participants relied on hospital or health center interpreter and

among those that reported that they spoke English well enough to converse, 35%

continued to want an interpreter in the healthcare setting (National Diabetes

Education Program, 2006). Health literacy is not endemic to just limited English

speakers, even native English speakers have difficulty understanding medical

49

terminology and understanding medical forms and directions (Institute of Medicine,

2004).

The inability to communicate differences in cultural beliefs and the lack of

knowledge regarding diseases processes and treatments has caused the Mien to

mistrust the Western healthcare system. Similar findings of cultural barriers and

mistrust are found in other refugee Asian populations such as the Hmong and

Cambodians (Johnson, 2002; National Diabetes Education Program, 2006).

Additional findings in the Hmong population include high rates (52%) of multiple

disease conditions in Hmong refugees, knowledge gaps of acute versus chronic

disease, and knowledge gaps regarding DM pathophysiology and symptoms, and

complications (Johnson, 1995).

The Hmong, which have equally limited access to Western ideas and

concepts, also have very similar diets where large amounts of rice is consumed daily

with every meal and similar beliefs about taking blood from the body (Johnson,

2002). The Hmong were found to self adjust Western medication regimens (Johnson,

1995). Similar findings of regimen adjustment were also found in other Asian groups

such as Cambodian and Korean Americans where health beliefs drove the use of

Western and traditional treatment modalities (Cha et al., 2012; National Diabetes

Education Program, 2006). Communication barriers have led to incidences of

mistrust in the Western healthcare system for other refugees. Refugees have already

experienced psychological and often physiological trauma and abuse and often have

50

difficulty with trust (Eckstein, 2011). Similar incidences of cultural barriers and

mistrust are well documented in the Hmong (Fadiman, 1998; Johnson, 2002).

Family Support

The role of social support has been studied in DM. Support varied from the

acquisition of knowledge, management of disease, material support, to coping

strategies (Kadirvelu, Sadasivan, & Ng, 2012). The younger generation of family

members had a strong role in managing and guiding care of DM. This behavior is

consistent with traditional values of caring and respecting Mien elders. However,

many of the participants did not live in the same household as their support person

making it difficult for the caregiver to perform interventions such as meal preparation

and self monitoring of blood glucose (SMBG).

Family behaviors can enhance self-management behaviors of DM in the home

(Mayberry & Osborn, 2012). Direct support such as assistance with diet, exercise,

and medication was reported as the most common type of support (Mayberry &

Osborn, 2012). Other immigrant populations such as the Chinese immigrants were

found to rely on family and friends as resources for DM care instead of health

professionals (Leung, Bo, Hsiao, Wang, & Chi, 2014). The types of support reported

by participants centered on medication and direct interactions with healthcare

providers.

Knowledge, motivation, and social support are independent predictors of DM

self care behaviors which in turn predicts glycemic control (Osborn & Egede, 2010).

The participants in this study have minimal knowledge of DM and low impetus for

51

change since DM is asymptomatic and the complications are not well understood by

the participants. Participants relied on family members to tell them how to manage

their medications and disease and needed confirmation from family members before

trusting others.

Recruitment

The author had difficulty recruiting participants. Similar to other Southeast

Asian refugee communities, the Mien have mutual assistance associations (MAA)

where elected Mien leaders act as a contact point between the Mien community and

society at large. The author spoke with Mien leaders in an attempt to recruit

participants, but was unsuccessful. This could be due to decrease self awareness of

DM in Mien individuals or a low prevalence in this population. It wasn’t until the

author approached individual community members—mostly caregivers working in

the healthcare system—that awareness peaked regarding the study. This highlights

the importance of family/caregiver roles in this population. A potential avenue for

healthcare providers to disseminate information to this population is to partner with

this community by working with willing Mien leaders. Similar local partnership with

the Hmong community have involved cross training of physicians and Hmong

Shamans to promote a better understanding of both traditional Hmong healthcare

practices and Western medicine (Agency for Healthcare Research and Quality, 2010).

Limitations

The descriptive findings in this study are specific and cannot be generalized to

a large population; however, it allows for the phenomena to be examined in detail.

52

Additional limitations include the number of participants; further research efforts

need to recruit more participants. A cross sectional study of the population would

also be useful to obtain data about the prevalence of DM. Limitations in research

methodology included the skill, experience, and bias of the author in designing and

conducting interview questions and inductive analysis of content. Participants were

recruited via snowball sampling and are not representative of the Mien population.

The validation of identified themes is a limitation of the study. Two

participants with the most formal education were contacted to discuss the final

themes. The two participants had difficulty understanding the concept of themes.

The author explained the process of how themes were derived from the meaning of

the participants’ interviews. One participant expressed disagreement with the themes

identified compared to his literal responses in the interview. The other participant

agreed that the themes reflected his experience managing his DM and accessing the

healthcare system. The discrepancy in responses appeared to be associated with each

participant’s ability to understand the concept of themes. Although both these

participants felt comfortable in conversational English, many literary concepts remain

foreign and difficult for them to comprehend. This suggests that different approaches

for theme validation should be considered in populations with low literacy levels.

Data collected regarding height and weight did follow a standard protocol

using the same scale, however beyond routine disinfection and care, and zeroing of

the scale prior to each use, no method was used to calibrate the scale to assess the

53

validity of the weights obtain. Future research design can include a calibration

protocol for the measurement of weight.

Blood glucose readings obtained by the participants were either self-reported

or from glucometer readings. The use of a glucometer with quality controls and a

written protocol would help to obtain accurate blood glucose data. Since all the

participants declined to demonstrate a self care behavior, it is difficult to verify that

glucometers were used appropriately. Participants reported that they felt

uncomfortable being on camera and cited embarrassment and not wanting to look

“foolish” in front of the author as the main reasons for declining. Also, the

participants may not have trusted the author with the recorded material.

Although various family members were present during the interviews, only

one caregiver was present. The caregiver’s presence and participation in the

interview was beneficial in that she confirmed and validated the experience of the

participant. It also provided insight to how the caregiver-patient relationship

functioned. However, because this participant had expressive aphasia, the family

caregiver talked over the participant occasionally and her presence may have

prompted the participant to behave differently or answer questions differently.

Implications for Practice

Cultural barriers, mistrust, and family support were themes underlying Mien

health beliefs and practices in DM revealed in this study. Family support helps to

mediate participants self care behaviors and interactions with the healthcare system.

Older adults rely on family members to provide medical care, help with medications,

54

organize and keep track of appointments, and interpret in the healthcare setting.

Cultural barriers were prevalent in participants’ understanding of DM and self care

behaviors. Generally, the Mien lack terminology to discuss medical conditions,

anatomy, and pathophysiology and perceive healthcare recommendations literally.

This was found to contribute to participant’s perceptions that DM was not important

since most participants did not have any symptoms. Cultural barriers played a role in

participants’ mistrust of the healthcare system, difficulty understanding their disease,

and ability to navigate a complex and often fragmented healthcare system.

These findings highlight issues in the ability of the older Mien adults to

perform DM self care behaviors and successful management of their disease. Many

research studies have demonstrated the need to disaggregate data regarding Asian

ethnic minorities. However, multiple Asian ethnic minorities and lack of funding

make it difficult to implement these studies. Commonalities were identified between

groups with similar shared experiences and histories suggesting that carefully

designed inclusion criteria for recruiting subjects may elicit more meaningful data.

Individualized, patient-centered and culture specific DM self management

education must go beyond providing classes and materials in an individual’s

language. Culturally appropriate assessments and modifications need to be made to

improve health outcomes. Healthcare providers need to be aware of the impact of

language, cultural obstacles, and healthcare experiences when designing diabetic

regimens.

55

Healthcare providers should discuss with the patient whether there is person

that takes on the main caregiver role and communicate with both the family support

person and the patient, with the patient’s permission. Clinical information systems

design can be modified to include involving caregivers through the use of reminder

technologies such as texts and phone calls and clinic hours that can accommodate

working caregiver schedules. It is important for healthcare providers to recognize the

extent of the role of the caregiver/family support person and to include them in

clinical activities.

Nurses are uniquely positioned to affect change for many vulnerable

populations such as the Mien. Nurses can use their strength in communicating to

identify areas of miscommunication and lack of trust. Nurses can improve education

and offer recommendations for patient-centered care and culturally appropriate

interventions in both outpatient and acute care settings. Nurse researchers must

continue to work with vulnerable populations to better understand cultural nuances in

order to improve health outcomes.

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57

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APPENDICES

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APPENDIX A

LETTER FOR USE OF THE CARE MODEL IMAGE

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APPENDIX B

UNIVERSITY INSTITUTIONAL REVIEW BOARD APPROVAL

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APPENDIX C

PARTICIPANT CONSENT FORM

Informed ConsentDear Participant:

You are being asked to participate in a research project that is being doneto fulfill requirements for a Master’s degree in Nursing at CSUStanislaus. We hope to learn how you take care of your diabetes at homeand what you know about diabetes and your health. If you decide tovolunteer, you will be asked to meet with a researcher and a Miencommunity member in a place of your choosing. You may choose to dothe interview in Mien or English. You may have family members presentas well. The researcher will ask you questions about your diabetes, yourdoctor’s visits, the foods that you eat, take your height and weight, andask to watch you perform any care that you normally do for yourdiabetes. The interview will take about two hours. If you agree, theentire interview will be audio recorded and the care that you perform willbe videotaped using the camera on a phone. You will also be asked toweigh yourself on a scale without shoes on. The researcher will alsomeasure how tall you are without shoes.

There are no known risks to you for your participation in this study.

It is possible that you will not benefit directly by participating in thisstudy. The information collected will be protected from all inappropriatedisclosure under the law. All data will be kept in a secure location. Onlythe primary researcher, Mien community member, and committee chairwill have access to the audio recordings and videotape. Audio recordsand video record will be coded. Video recording will avoid capturingfacial features if possible.

There is no cost to you beyond the time and effort required to completethe procedures described above. Your participation is voluntary. Refusalto participate in this study will involve no penalty or loss of benefits.

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You may withdraw at any time without penalty or loss of benefits. Youwill receive at $10 gift card to Target as a thank you for your time andparticipation.

If you agree to participate, please indicate this decision by signing below.If you have any questions about this research project please contact me,Mey Saephanh, at 209-667-6591 or my faculty sponsor, Dr. CarolynMartin at 209-667-6591. If you have any questions regarding your rightsand participation as a research subject, please contact the UIRBAdministrator by phone (209)667-3784 or emailIRBAdmin@csustan.edu.

Sincerely,Mey Saephanh

I give consent to be digitally recorded during this study: Please initial _____Yes_____No

I give consent to be visually recorded during this study: Please initial _____Yes_____No

_________________________________________________________________________Signature Date

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APPENDIX D

RECRUITMENT FLYER

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APPENDIX E

QUESTIONNAIRE TOOL

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