ABSTRACT
In American Samoa (AS), nearly 22% of adults have type 2 diabetes. Diabetes is best managed by diet and lifestyle modifications and strict medication adherence. Cultural aspects might affect medication-taking beliefs, and thereby influence medication adherence. This study aims to explore diabetes medication-taking experiences and knowledge and related cultural beliefs in AS adults with diabetes and healthcare providers. Six focus groups were conducted with 39 AS adults with diabetes and individual interviews were performed with 13 diabetes healthcare providers. Data were transcribed and analyzed using NVivo 8 software. Themes pertaining to medication taking and adherence were identified. Patients and providers reported that barriers such as confusion about medications and concern about medication costs negatively influence medication taking, while cultural values and obligations both positively and negatively impact medication adherence. These findings help elucidate the relationship between medication-taking beliefs and culture in AS adults with diabetes and highlight the importance of continued research within this population.
KEYWORDS: Diabetes, Medication-taking beliefs, Adherence, American Samoa
INTRODUCTION
Diabetes mellitus is a global epidemic, currently affecting 220 million individuals worldwide [1]. By 2030, diabetes prevalence is projected to double, thereby affecting 439 million, or 7.7%, of all adults [2]. Diabetes is associated with increased risk for cardiovascular disease, stroke, neuropathy, retinopathy, and mortality [1], and as a result, extremely high healthcare costs. In the USA, 11.3% of adults, 20 years and older, have diabetes [3], and in 2007, diabetes cost the USA more than 174 billion dollars [3]. As diabetes prevalence rates rise, it is likely that diabetes-related morbidity and mortality and healthcare costs will continue to increase [2].
Recently modernized nations such as the Pacific Islands have disproportionately higher diabetes prevalence rates [4, 5]. For example, in the US territory of American Samoa in 2002, nearly 22% of adults had type 2 diabetes compared to 11.3% in the less-modernized nation of Samoa in 2003 [4]. Thus, research is needed to inform the adaptation of existing interventions to this cultural context. This paper will explore cultural perspectives on medication taking for diabetes in this setting.
Diabetes management is a complicated and enduring process that is often quite challenging for patients and healthcare providers. Regimens include diet and lifestyle modification and strict medication adherence and glucose testing [3, 6, 7]. Individuals with diabetes must learn enough about their condition to communicate effectively with providers and translate what they and their providers know into successful self-management. Compared to those with acute illnesses, individuals with chronic medical illnesses such as diabetes tend to have lower rates of medication adherence, especially after the first 5–6 months [8]. This is likely because diabetes medications are preventative in nature and do not provide the positive reinforcement associated with immediate symptom relief. In a systematic review of studies reporting adherence to diabetes medication, Cramer [9] reported that 36–93% of adults with diabetes were adherent to their medications (i.e., oral hypoglycemic agents, insulin). As medication nonadherence is related to increased risk for adverse events, hospitalizations, and mortality [10], research has explored ways to improve adherence by identifying characteristics associated with adherence and nonadherence.
Medication adherence is associated with the following characteristics: younger age, female gender, higher education level, European-derived ethnicity, Western consumer culture, high socioeconomic status, lack of anxiety or depression, simplicity of regimen, high medication knowledge, high health literacy, high social support, and using multiple strategies to remember taking medications [8, 11–17]. Conversely, medication nonadherence is specifically linked to barriers such as lack of health insurance, obstacles to healthy eating and exercise, low health literacy, cultural differences, forgetfulness, and having other priorities [8, 18, 19]. Research suggests a positive relationship between nonadherence and the identification of at least one barrier to taking medications [15, 20].
In order to better understand nonadherence, researchers have investigated the role of medication-taking beliefs in individuals with diabetes [16, 18, 21, 22]. Mann et al. [18] assessed predictors of diabetes medication adherence in patients from an urban US primary care clinic. Patients were interviewed using questionnaires assessing their beliefs about diabetes and diabetes medications. Adherence to diabetes medications was measured using the Morisky medication adherence scale [23]. Results indicated that 25% of patients had poor medication adherence. Low medication adherence was associated with the following: believing that diabetes occurs only when blood sugar is high, not taking medications when glucose is normal, concern about side effects of diabetes medicines, lack of self-confidence in controlling diabetes, and feeling that medications are difficult to take. In another study, Mann et al. [22] assessed knowledge and beliefs about diabetes and diabetes medications among low-income racial/ethnic minorities with diabetes. Over half reported that they could “feel” when their blood glucose levels were “high,” but believed that it was not high until it was >200 mg/dl. Nearly one third of participants thought that a physician could cure them from having diabetes. Regarding medications, 23% thought that they did not need to take their medications if blood glucose levels were normal, 39% reported being concerned about potential medication side effects, 16% worried about becoming addicted to their medications, and 18% noted that medications were difficult to take. Findings from these studies [18, 22] are inconsistent with a chronic disease model of diabetes, as patients reported managing their diabetes more like an acute rather than a chronic illness. Clinically, providers and patients should explore beliefs and misconceptions about medication taking and diabetes management, as many of these might be modifiable. Research should investigate diabetes patients' and providers' perceptions regarding knowledge and beliefs about diabetes and diabetes medications to determine possible misperceptions and to understand potential barriers on both sides. Findings may be used to improve diabetes management and medication adherence.
Cultural perspectives might also influence medication-taking beliefs, thereby influencing medication adherence. Capstick et al. [24] conducted a review exploring the relationship between Polynesian culture and health in the Pacific Islands. In Polynesian cultures such as Samoa, Tonga, and Tuvalu, harmonious social relationships are a large part of health such that one is not considered healthy unless their social relationships are in good order [24]. Thus, illness might be seen as a transgression of social, moral, or religious rules. For individuals from Polynesian cultures, health beliefs are often pluralistic, or influenced by both Western and traditional cultures. As many Pacific Islanders are raised in Western countries and thereby exposed to Western medicines, individuals can draw from both traditional and Western health beliefs.
Norris et al. [25] assessed illness beliefs in Samoans based in Samoa and New Zealand to determine how they make use of both traditional and Western models of treatment and healing. The authors reported that Samoans possess two paradigms (traditional vs. Western) for coping with illness, and they often determine through trial and error which illnesses are Samoan and which are Western, based on which treatment is successful. This is particularly important because it is thought that Samoan illnesses are best treated with Samoan medicines, while Western, or palagi illnesses such as diabetes are best treated with Western medicines [25]. The authors also reported that in Samoan cultures, family members often influence individuals' beliefs about what an illness is and how it should be treated. They noted that in many cases, family preferences might override individual preferences. This suggests that certain cultural aspects might affect medication-taking beliefs and thereby influence medication adherence.
Current study
No known research has explored diabetes-related medication-taking beliefs in Samoan adults, either in the Samoan archipelago or the several larger nations which include Samoan communities (e.g., USA, New Zealand, Australia). The present analyses are part of a larger study in which qualitative data pertaining to diabetes care (barriers and facilitators to diabetes care) were collected from American Samoan adults with diabetes and diabetes healthcare providers at a community health center in American Samoa. This was a formative step in the cultural translation of a diabetes intervention study [see 26, 27]. As this study was exploratory in nature, qualitative research methods (i.e., focus groups, individual interviews) and analyses were used. Qualitative analyses are valuable when conducting exploratory research because they are based on a holistic perspective, are inductive and not limited to predefined variables, and are helpful when questions are difficult to quantify.
This manuscript focuses specifically on information related to medication-taking beliefs, specifically how they intersect with Samoan cultural beliefs and practices among adults with type 2 diabetes. Therefore, participants included diabetes healthcare providers and patients. For the purposes of this manuscript, we compared patient and healthcare provider perceptions about medication taking and culture, with the expectation that results would inform medication adherence intervention strategies in this cultural context.
METHOD
Participants
Six focus groups were conducted with 39 American Samoan adults with type 2 diabetes and 13 individual interviews were performed with healthcare providers. Both patient and provider perspectives were sought to learn about barriers and facilitators to diabetes care. Focus group participants were selected from the patient registry at the Tafuna Family Health Center (TFHC) in American Samoa and were invited to participate. TFHC is a primary care health center operated by the American Samoa Department of Health and designated as a community health center by the US Bureau of Primary Health Care. As patients were recruited for focus group participation from a registry with socio-demographic descriptors, we sought to obtain a balance in terms of gender, age, and distribution across villages in the clinic catchment area. All TFHC healthcare providers who interacted with diabetes patients were invited to participate in the individual interviews.
Procedures
Study procedures were approved by the Institutional Review Boards at both Brown University and the American Samoa Department of Health. Prior to completing focus group or individual interviews, all participants provided written consent. Focus groups were conducted at TFHC between January and September 2008, and individual interviews took place from July to September 2007. Average length of focus groups was approximately 90 min, and individual interviews were 60–90 min long.
Focus groups were conducted in Samoan by American Samoan project staff, and individual interviews were conducted in English by the field staff from Brown University. Focus group facilitators and the field staff were trained in the protocols, research agendas, and group facilitation by one of the coauthors (RKR). Following each focus group and individual interview, facilitators wrote debriefs which were regularly reviewed to ensure fidelity to study protocol, to consider whether saturation of key research topics had been reached [saturation occurs when no new information is obtained and researchers feel that the data adequately represent the range and richness of participant experiences; see 28], and to review research and facilitation skills.
The research agendas for focus group and individual interviews were nearly identical. Instead of using fully scripted questions to facilitate discussion, the investigators identified intent statements that highlighted objectives from key content areas: (1) diabetes and fa'a Samoa [translation: the Samoan way of life]; (2) beliefs and barriers associated with planned intervention strategies; and (3) beliefs and barriers associated with diabetes care recommendations and self-management. Facilitators then used these intent statements to aid in creating culturally and linguistically appropriate questions and/or probes for discussion. After several focus group and individual interviews were conducted, some probes were eliminated due to saturation of responses and to allow more time for other questions. During the focus groups, participants occasionally asked questions about their diabetes care. These questions were recorded by the facilitator and addressed by the nurse case manager after all agenda items were discussed.
Data preparation and analyses
Focus group transcripts were translated from Samoan to English by facilitators and other project staff. Translated transcripts were reviewed for clarity by two coauthors (RKR and NB) and a research assistant. Unclear passages were highlighted and reexamined in the original Samoan transcripts by Samoan research staff. Translated focus group and individual interview transcripts were then entered into NVivo 8 software (QSR International, Doncaster, Australia) to facilitate data management and analyses.
Each focus group and individual interview transcript was reviewed by at least two coders (RKR, JD, DS, and NB). For the purposes of this manuscript, only passages related to the broad domains of medication taking and adherence to diabetes medications were coded into more specific categories. A third coder crosschecked all of these codes, and discrepancies in coding were clarified and discussed to the point of consensus. For this paper, themes related to medication taking and the intersection of Samoan culture and medication taking were identified.
Results
Participant characteristics
Focus group patients
Focus group patients (N = 39) were American Samoan adults with type 2 diabetes. They were predominantly female (N = 22, 56%), and the most common age category was between 50–59 years old. Patients differed greatly in terms of education, with some receiving no formal education and others receiving up to 16 years of education. They also reported a wide range of years since diagnosed with diabetes; several recently learned that they had diabetes, while many had known about their diagnosis for decades. It is notable that many of the focus group patients might have had diabetes for years without knowing it. See Table 1 for further demographic information for focus group patients.
Table 1.
Demographics for focus group participants (N = 39)
N | % | |
---|---|---|
Gender | ||
Male | 17 | 44 |
Female | 22 | 56 |
Age (years) | ||
30–39 | 3 | 8 |
40–49 | 3 | 8 |
50–59 | 12 | 31 |
60–69 | 12 | 31 |
70–79 | 8 | 20 |
80–89 | 1 | 2 |
Education (years) | ||
0–8 | 9 | 23 |
9–12 | 17 | 44 |
13–16 | 5 | 13 |
Missing | 8 | 20 |
Years with diabetes | ||
0–4 | 14 | 36 |
5–9 | 10 | 26 |
10–19 | 8 | 20 |
20+ | 5 | 13 |
Missing | 2 | 5 |
Individual interviews with healthcare providers
Healthcare providers (N = 13) were mostly female (N = 10, 77%). The most frequent age category was between 45–54 years old. Healthcare providers were nurses, physicians, outreach workers, and one administrator with a clinical background. As a result, they had a wide range of years of education and years of experience working with individuals with diabetes. Further, most (N = 11, 85%) of the healthcare providers reported at least 5 years of experience working with diabetes patients. Table 2 provides more detailed demographic information for the healthcare providers who completed individual interviews.
Table 2.
Demographics for individual interview with healthcare provider participants (N = 13)
N | % | |
---|---|---|
Gender | ||
Male | 3 | 23 |
Female | 10 | 77 |
Age (years) | ||
35–44 | 2 | 15 |
45–54 | 7 | 54 |
55–64 | 1 | 8 |
Missing | 3 | 23 |
Profession | ||
Outreach worker | 3 | 23 |
Nurse | 6 | 46 |
Physician | 3 | 23 |
Administrator | 1 | 8 |
Years of treating diabetes patients | ||
0–4 | 2 | 15 |
5–9 | 4 | 31 |
10–19 | 3 | 23 |
20+ | 4 | 31 |
Focus group themes
The following five themes emerged from the six focus groups.
Concern about medication side effects
In 13 comments (from 12 different patients), focus group patients expressed concern about potential medication side effects. Further, they noted that their concerns about side effects often led to medication nonadherence. For example:
I have taken all these different pills, but they make my body weak. So it's better to just don't take any pills unless you feel your blood sugar high… He [the doctor] gave me Glucophage to take. I took it twice, and what I felt then was my body was so weak. So I guess it's of no use for me to take it.
I get this weird feeling when I take too many pills, my mouth will become very sour… so I just stopped taking my pills all along for awhile.
Confusion about changes in blood sugar
Patients frequently expressed uncertainty about what constituted high vs. low blood sugar, and how they might use medications to control their blood sugar. In fact, 11 comments (11 patients) pertained to this concern:
I don't understand why it [blood sugar] does that—sometimes it goes up and sometimes it goes down. I just don't understand… They don't explain it well enough on how to take your insulin, that is why I changed my own doses.
When I check my sugar level, I really don't know what is high and what is low… Only then I know that I have broken the rules by overeating, that the time I check my blood sugar, it's gone up to 200. Then I said to myself I have eaten a lot more food than what I'm supposed to eat.
Concerns about medication costs
In five comments, four patients reported being concerned about the high cost of diabetes medications in American Samoa ($10 co-pay). They noted that medication costs were a barrier to taking medications. Some reported that family members living off of the island bought and mailed medications to them, while others described that the availability of traditional Samoan medicines (e.g., juice taken from soursop leaves) in combination with high medication (e.g., insulin, Glucophage) costs kept them from taking their prescribed diabetes medications.
Our strips and insulin shots are being taken care of by our kids off island because it is too expensive here in Samoa.
I will go to Apia [Samoa]. It's a lot cheaper there and you get your medicines for free…
Anytime a teacher tells me there is a nice Samoan medicine somewhere, I will go right away and get a bottle. Right now, I am not taking any more [Western] medicines.
Impact of Samoan cultural beliefs
Many patients reported that Samoan cultural beliefs affected adherence. Specifically, they noted the importance of following healthcare provider recommendations to honor their families and God. In 17 comments, 12 patients reported that they should follow their physicians' suggestions for managing their diabetes. Many stated that they should “always obey the doctor.” In 14 comments, 10 patients noted that they should take care of themselves either to honor God or their families.
Obey the doctor and you will live longer.
What the doctor tells us is the same as what the Bible tells us, “No to this” and “Yes to this” and “No to that”—it's the same thing.
The Lord made our bodies, so He knows the problems and the things we are supposed to do.
If the family works together to help the sick person, that will be of great help to the sick.
Family and cultural obligations impact nonadherence
Many focus group patients reported medication nonadherence in the face of conflicts with family, cultural obligations, or the belief in traditional Samoan medications. In seven comments, seven patients stated that the preference for traditional Samoan medications was a barrier for adherence to Western medications. Also, they reported that obligations to family or traditional cultural celebrations like fa'alavelave (a traditional Samoan lifecycle celebration) might impact adherence.
I have never gone back for any of my appointments. Right now, I just love to take the Samoan leaves [as] medications.
There are people who don't believe in prescribed medicine but are willing to take the Samoan medicine; but to my belief, our kind of disease [diabetes] does not work with Samoan medicine.
When there is a fa'alavelave, for example in my wife's family and there is no money to do things, then that's when the [blood] pressure goes up and the blood sugar goes up… I believe that is one of the major cause of the diseases and its making this disease come rapidly on us Samoans.
Healthcare provider interview themes
The following five themes were identified from all 13 of the healthcare provider interviews and reached saturation.
Medication taking is challenging
Healthcare providers described potential reasons for medication nonadherence among their patients with diabetes. Many providers felt that patients did not adhere to medications because they did not understand how or when to take their medications (23 comments/10 providers). In addition, some providers believed that patients might be nonadherent to medications because they “didn't care” (eight comments/five providers). Others worried that patients were nonadherent or were not used to taking medications to manage illnesses (seven comments/five providers).
They [the patients] are not understanding the right time to take the medication and the right time to eat. This is the main thing, and sometimes they just don't care. They just don't care about their medication and they just forget about eating and they eat first and they forget to take the medication and then they take the medication at the wrong time. But some people they understand, they understand more.
I notice when I see a patient, a lot of them do not understand. And if I ask them “How many Glucophage are you taking?” or “How many Glynase are you taking?” A lot of them will say, “Oh, I am taking one twice a day.” But then I look at the chart and it should be two. So they are missing the point.
When they come in for the follow-ups, it's the same old excuse—“Oh, I forgot to take” or “I’m finished with all my, you know, pills last month and I don't get a refill.” It's their excuses that they tell me when they come in.
Samoan people, some of them are not very eager or maybe they don't understand or have an “I don't care” attitude.
I think they are just tired of taking their medications—or they just forget.
Patients only take medication when they feel unwell
Healthcare providers reported that patients were more likely to take their diabetes medications when they were feeling unwell. These perceptions were described in 14 comments by six providers. This theme is consistent with the fact that some providers felt that nonadherence might be due to patients' unfamiliarity with taking medications to manage illnesses.
Because they feel sometimes that they are better and they don't need to follow-up. They say, “I've already cured my diabetes.”
Sometimes they use it [medication] and sometimes they're not going to use it… They think that the medication you take today for your problem, it'll just, for instance if you have a cut and the medication you gonna take it today—just today and it'll heal it.
So they think that uh, that the disease they have will just go away like uh flowing of the wind. But they don't know that if you don't take care of that disease in you right now, it will give you more stress. You will either be hospitalized, or pass away.
Some reason why some people don't take medication at times when they are feeling good they say, “Oh, I don't need the medication.”
Concerns about medication costs and availability
In 20 comments (11 providers) healthcare providers noted that in American Samoa, diabetes medications are expensive and patients with diabetes are frequently unable to afford to pay for medications. Thus, the high cost of diabetes medications in American Samoa was a barrier to medication taking. Healthcare providers also stated that the pharmacy commonly ran out of medications. As a result, medications were frequently unavailable, and patients were often unable to fill their prescriptions.
Sometimes they stop taking the medications when they run out and they don't have enough money to go back for a refill.
They [patients] say, “I don't have the money.” You know, this $10 for them is very hard money; especially when you are not only diabetic—you have high cholesterol and you have some other problems like kidney problems. So adding $10 is around $40–50 and that's too much money. So that is the main problem here. It's really a big problem.
The pharmacy—they are always running out [of medications]. And people are stuck with no medication and the whole time we are trying to educate them. If you don't have the medication ready and available to you because we only have one pharmacy in Faga'alu, then please work with the diet and exercise during this time… Here's the diet you use when you are with medication and when you are without [medication] use this type of diet.
Beliefs about patient preferences and responsibilities
In 12 comments, seven healthcare providers described that patients preferred being given direct advice about how to manage their diabetes. Many providers believed that being direct with patients about diabetes care would improve patient understanding about diabetes self-care and medication taking. Providers also believed that self-care is the patient's responsibility (nine comments/six participants). In nine comments, six providers reported that patients should adhere to doctors' advice for self-care behaviors out of respect for their families.
When I approach them I say, “You have only got one life to live. If you want to live long that is the only way that you should do. You have your family right there with you and you need to live long so you can see your grandkids grow up…” Some people say, “Oh, that's right—you are right.” Sometimes you have got to tell them the truth about what is going to happen if they do not take care of themselves. They appreciate it if we tell them the straight thing because it is the only way that you should do.
Sometimes I do confront them and I say, “I'm just telling you that this is your blood sugar level—400—and it is up to you.
So I told her, “You are 41 and maybe you live another 30 or 40 years, but how can you do that? You can do that by taking care of yourself.” If you are a diabetic, you take care of yourself, taking medicine and doing exercise. That is up to you. I am just a part of this—I just let [them] know it's really up to the individual.
I said, “Well, the decision is yours—it is your life. But if you don't want, if you don't care about your life, if your don't want to live longer to see your grandchildren, then it is up to you.”
Family and cultural obligations impact nonadherence
Nonadherence was described in the face of family or cultural obligations, or the belief in traditional Samoan medications. Healthcare providers reported that obligations to family or traditional cultural celebrations such as fa'alavelave, as well as the belief in using traditional Samoan medicines, sometimes influence medication-taking beliefs or adherence. Providers stated that patient obligations to family or cultural celebrations impacted their adherence to medications (13 comments/10 providers). In eight comments, six providers reported that patients frequently preferred using traditional Samoan medicines rather than Western medications to manage illnesses, including diabetes.
And the money mostly goes to the fa'alavelave. And they [patients] are not thinking about their bills. They are concerned about fa'alavelave—mostly they are concerned about that.
Sometimes I ask our people, the clients, “What happened? Do you have a medication—do you have a medication at home?” They say, “No, I'm running out of money.” [I ask] “Then how come you are running out of money?” You are supposed to take care of yourself—then you have to take care of the family problems.
They [patients] value the family and fa'alavelave and uh, a lot of other things and they wait until they get more money and then they come [to appointments].
They [patients] will always go back to the Samoan medicine once their blood sugar or blood pressure go down. Then they will seek an alternative since the Samoan medicine is free and they will go back to taking the Samoan medicine instead of the medication from the doctor.
They go there [to the Samoan medicine man], but they only come back [to the hospital] because of complications. But when I refer them to the medical clinic, I always have these high hopes that the doctors there will give them more advice.
DISCUSSION
The present study explored the relationship between medication-taking beliefs and culture in American Samoan adults with diabetes and diabetes healthcare providers. Results indicated that barriers such as confusion about how and when to take diabetes medications and concern about medication costs negatively influence medication taking, while cultural values may work both for and against medication adherence. That is, patients might adhere to their physicians' advice for various reasons, while cultural beliefs and family values might influence both nonadherence and adherence. Results are discussed by theme.
Confusion about medications and side effects
Both patients with diabetes and diabetes healthcare providers reported that confusion about how and when to take diabetes medications and concern about medication side effects are barriers for taking medications. Patients reported that they were often unsure about what causes blood sugar changes and how to use medications to regulate blood sugar. Providers felt that medication nonadherence was often due to patients not understanding how or when to take their medications, “not caring,” or not being accustomed to taking medications to manage illnesses.
These findings are supported by research highlighting the challenges of adhering to diabetes self-care behaviors and medication across settings [6, 7]. As mentioned, diabetes management is complex, and individuals with diabetes are largely responsible for self-care; they must maintain strict and lifelong adherence to medications and diet and lifestyle changes [3, 6, 7]. Medication-taking beliefs have a strong impact on medication adherence [16, 18, 21]. Our findings are in line with those of Mann et al. [18, 22]. Using a culturally diverse sample of adults with diabetes from an urban primary care clinic in New York City, Mann et al. [18] found that low medication adherence was predicted by the belief that diabetes occurs only when blood sugar is high, the decision not to take medications when glucose is normal, concern about side effects of diabetes medicines, lack of self-confidence in controlling diabetes, and feeling that medications are difficult to take. Further, Mann et al. [22] reported diabetes patients were likely to report being worried about the potential for medication side effects and addiction and found that medications were difficult to take. Horne and Weinmen [21] found that in individuals with chronic medical illnesses, those who perceived medication as a necessity were more likely to be adherent. Conversely, those who reported medication concerns (e.g., worry about long-term effects) were more likely to be nonadherent. The authors concluded that medication adherence depends upon an implicit cost-benefit analysis in which individuals with chronic medical illnesses weigh the perceived necessity of medications vs. the concerns about medication, such as side effects [21]. Other factors such as health literacy also affect medication adherence [29]. Health literacy is defined as “the ability to understand health information to make good decisions about your health and medical care” [30].
These concerns may be better addressed if diabetes healthcare providers spend time discussing patients' medication regimens and use techniques for those with low literacy, such as speaking more slowly, reading instructions aloud, and checking for understanding by asking patients to repeat what they understand [31]. Also, providers need to elicit their patients' medication-taking beliefs and related cultural beliefs to determine any concerns or barriers to medication taking. This process may be further facilitated by others on health care team, including nurses, diabetes educators, outreach workers, all serving to reinforce the same messages, so that the burden is not solely on the physician. This is classic “chronic care model” philosophy that is the foundation of current community health centers' approach to patient care [32].
Patients only take medications when they feel unwell
Healthcare providers expressed views that patients might only take their medications when they felt unwell. That is, providers described that when patients feel well, some have the misperception that their diabetes has been cured, and they skip doses or stop taking their medications. Also, they perceived that patients consider diabetes as a disease that can be cured or ignored. This theme might be influenced by the fact that many diabetes patients, especially those in more recently modernized nations such as the American Samoa, are not accustomed to taking medications to manage illnesses [18].
These results are consistent with previous research in other settings suggesting a relationship between diabetes medication nonadherence and patient perceptions of diabetes as an acute rather than a chronic illness. Mann et al. [18, 22] reported that viewpoints held by many of their study participants were inconsistent with a chronic disease model of diabetes. Just as with the previous theme, further patient education is needed to improve patient knowledge about diabetes management. Healthcare providers must seek to elicit and modify misconceptions about medication taking and disease management.
Concerns about medication costs and availability
Patients and providers reported that the high cost of diabetes medications in American Samoa negatively impacts medication-taking beliefs and adherence. Some patients noted that friends and family living off the island frequently purchase their medications and supplies for them, while others stated that high costs keep them from taking their diabetes medications. Providers corroborated this, reporting that high medication costs are a huge barrier to medication taking. In addition, providers indicated that medication availability is also an issue, as the pharmacy sometimes runs out of medications and patients are unable to fill their prescriptions.
Previous research suggests that high medication costs have been linked to problems with medication taking [33–37]. Specifically, high costs result in patients either cutting back or stopping their medications altogether. It is notable that many patients who cut back on their medications do not discuss this with their physicians beforehand, which might lead to adverse consequences [38]. Thus, physicians should be encouraged to be more proactive in identifying patients who might have trouble paying for their medications.
Influences of Samoan culture on adherence and nonadherence
Patients and providers agreed that Samoan cultural beliefs affected medication adherence. Patients characterized Samoan cultural beliefs as adherence to self-care and doctors' advice for the sake of, or to honor family, and in respect for God. They also reported a tendency to obey the doctor, as he or she knows best. For providers, Samoan cultural beliefs were characterized as perceptions of patients preferring to be told what to do, that patients are responsible for their self-care, and adherence to doctors' advice for self-care for the sake of family. Thus, providers perceived that patients want direct advice regarding diabetes management. They also believed that self-care is the patient's responsibility and thought that patients should adhere to self-care behaviors and medication regimens out of respect for God and their families. As shown in our previous work, patients and providers described that nonadherence commonly resulted from family conflicts and commitments or traditional cultural obligations such as fa'alavelave. Nonadherence also might stem from the belief in traditional Samoan medications [39].
Thus, cultural values positively and negatively affect medication-taking beliefs, and as a result, affect adherence. It has been suggested that cultural beliefs surrounding health play a role in the ability to understand health information and to make decisions about healthcare [19]. In their review on the relationship between culture and health in the Pacific Islands, Capstick et al. [24] reported that for individuals from Polynesian cultures, health beliefs are often pluralistic and influenced by both Western and traditional society. As American Samoa is a recently modernized nation, patients in this study seemed to draw on both Western and traditional health beliefs. Norris et al. [25] proposed that in Samoa, family members often have a say over what constitutes an illness and how it should be treated. This study confirmed those observations. Thus, culture plays an important role in the management of illnesses, especially in this collectivist Samoan context. Patients might adhere to doctors' advice for various reasons and nonadherence might be influenced by family demands. Providers may improve medication adherence by educating family members and enlisting family support on role of medications in diabetes care.
The present study had several limitations. First, the focus groups and interviews were designed to assess the barriers and facilitators to diabetes care, so the subject matter did not pertain exclusively to beliefs about medication taking and adherence. Second, the focus group analyses were done with transcripts translated from Samoan to English, so certain subtleties in language might have been missed. Third, this study relied on the self-report of diabetes patients, which might have been biased. Also, patients were recruited for focus groups from a convenience sample, and the views of those who agreed to participate may or may not be representative of the entire TFHC patient population. Finally, medication adherence was not assessed.
This is the first known study to explore the relationship between medication-taking beliefs and culture in American Samoan adults with diabetes and diabetes healthcare providers. These findings suggest that future interventions in Samoan populations should focus on diabetes education to ensure that patients understand the basic information about diabetes and how they can use medications and diet and lifestyle modifications to manage their illness. As patients reported that the high cost of medication is a barrier to taking medications as prescribed, patients who might struggle to pay for medications should be identified. Finally, patient-provider communication training should include methods to elicit cultural beliefs and/or misconceptions about medications, along with other techniques for patients with low literacy to ensure patient understanding. A randomized controlled trial using community health workers, as part of the primary care team, to teach patients about medication and improve adherence is currently in progress [26].
Acknowledgments
This project was supported by the National Institutes of Diabetes and Digestive and Kidney Diseases (R18-DK075371 awarded to the last author). We are grateful to Sam Holzman, Ember Keighley, Meaghan House, Michelle Lam, Marissa Roberts, Tupe Siaosi, and the staff and patients from the Tafuna Family Health Center for their assistance on this project.
Footnotes
Implications
Policy: Given that American Samoans are disproportionately affected with diabetes, resources should be directed towards the implementation of culturally relevant interventions to improve diabetes management and reduce diabetes-related health disparities.
Researchers: Future interventions in Samoan populations should focus on diabetes education to ensure that patients understand basic information about diabetes and how they can use medications and diet and lifestyle modifications to manage their illness.
Practice: Diabetes healthcare providers are encouraged to elicit patients' medication-taking beliefs and related cultural beliefs to determine potential concerns or barriers to medication taking and to help modify misconceptions about medication taking and diabetes management.
Contributor Information
Diana W Stewart, Phone: +1-713-5637564, FAX: +1-713-7927196, Email: dwstewart@mdanderson.org.
Stephen T McGarvey, Email: Stephen_McGarvey@Brown.edu.
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