Diabetes Is Devastating, and Insulin Is a Death Sentence: Provider Perspectives of Diabetes Self-Management in Arab-American Patients

Two health care practitioner focus groups were conducted to identify barriers and facilitators to DSM in Arab-American patients with diabetes. Participants included Arab-American physicians (n = 5, mean years of clinical practice 8.00 ± 8.89 SD) and pharmacists (n = 3, mean years of clinical practice 19.00 ± 11.00 SD) serving Arab-American patients living in the metropolitan Detroit area. All participants were recruited on a voluntary basis and completed written informed consent using procedures approved by the institutional review board at Wayne State University.

The skilled moderator, a Syriantrained physician fluent in Arabic and with extensive diabetes care experience, conducted the focus groups. Focus groups were conducted in English because all of the Arab-American health care practitioners were fluent in both Arabic and English. The sessions were both video and audio recorded. Session debriefings were conducted immediately after participants’ departure per the study protocol.

Qualitative content analysis using a data-driven inductive approach was implemented (20) in an effort to establish codes and common themes derived from the data (21). Two researchers independently read both transcripts and assigned codes for commonly occurring themes. With repeated readings, similar codes were grouped into main themes. Researchers then met to discuss their findings, which revealed a consensus level of 80%. Discordant codes were discussed, and the coding was further refined until complete agreement was reached. A third researcher who was not involved in the coding then reviewed and confirmed the final themes and sub-themes.

Four distinct overall themes emerged from the discussions of providers’ perceptions of DSM among diabetes patients: 1) the meaning of DSM, 2) facilitators of DSM, 3) barriers to DSM, and 4) cultural factors. An overview of the themes and sub-themes and their respective definitions is provided in Table 1. Following is a description of the themes and sub-themes, with illustrative quotes for each.

The meaning of DSM theme reflected the providers’ perceptions of what DSM means to their Arab-American patients with diabetes, and it encompassed two sub-themes: patients’ understanding and patients’ actions. Patients’ understanding concerned patients’ ability to comprehend the severity of the disease, its progression, and the risks of possible complications.

The patients’ actions sub-theme reflected a belief in the importance of patients taking active responsibility for keeping the illness under control. This sub-theme encompassed actions for managing illness by taking prescribed medications, controlling the diet, and exercising.

The facilitators theme identified factors that participants perceived as fostering DSM adoption by their Arab-American patients with diabetes and included four sub-themes: education, health care providers, motivational strategies, and family support/involvement. The education sub-theme encompassed methods and strategies used by providers to help patients understand their diabetes. All providers agreed that education was crucial to DSM. However, information about diabetes has to be simplified as much as possible and repeated many times, until patients “come around,” gradually understanding and accepting their illness. Some providers believed in the importance of offering classes with groups of patients, although resources did not always allow this.

The health care providers sub-theme reflected the need for Arabic-speaking health care providers to help patients maintain the best possible health. Participants believed in a multidisciplinary approach, with teams of providers that included Arabic-speaking physicians, pharmacists, dietitians, and diabetes educators.

The motivational strategies sub-theme included methods used by providers to promote DSM skills among their diabetes patients. Helping patients to set goals and keep records to “follow their numbers” are strategies employed to help patients gain ownership of their diabetes. Several providers stressed the necessity of employing scare tactics, explaining in graphic terms such risks as loss of vision, amputations, and kidney failure to patients who do not keep their diabetes under control.

The fourth sub-theme under the facilitators theme was family support/involvement. All participants recognized the active support of family members as a crucial aspect of DSM in Arab-American patients with diabetes. Support could be as a “watchful eye,” helping a patient maintain a good diet and avoid sweets and overeating; even children and grandchildren could be supportive by encouraging older patients with diabetes to exercise.

The barriers theme encompassed factors that the participants perceived to hinder DSM in their Arab-American patients, with five sub-themes: diabetes disease itself, fear, denial, misconceptions, and health care system. Within the diabetes disease itself sub-theme, providers characterized diabetes as a “silent killer,” with patients frequently experiencing no symptoms of illness. Several providers saw this as the main reason for lack of adherence with medications and dietary restrictions; patients simply do not feel sick.

The second barrier sub-theme centered on patients’ fears of diabetes medications and treatments. Providers’ perceptions were that Arab-American patients with diabetes are fearful of needles in general, and of the necessity of injecting insulin in particular. Insulin was described as a “death sentence,” with providers saying their patients frequently describe being on insulin as the worst thing that could happen to them.

Denial, the third barrier sub-theme, reflected providers’ view that Arab-American patients often do not take their diabetes seriously. This was expressed as patients’ belief that pills cannot control blood glucose or rationalizing that eating a little sugar is okay because “It won’t kill me.” Providers described patients who refuse to take responsibility for their diabetes and shift the blame, saying that they were “forced” to eat pizza or sweets, simply because these foods were provided by someone else.

Providers also saw generational differences among their patients. One provider described a “war mentality” among the older generation of patients that makes them feel obligated to eat whatever food is available, since they do not know if more will be forthcoming.

The fourth sub-theme under barriers was misconceptions/lack of understanding. Providers said that patients’ misconceptions regarding diabetes include viewing medication as a cure that protects you and removes the need for self-responsibility; simply taking medication is all one needs to do to manage diabetes. This attitude leads to a false feeling of security, with patients believing that they can eat what they please, as long as they are on diabetes medication.

Several providers noted that some Arab-American patients see herbal or other alternative preparations such as cinnamon as viable alternatives to medications. Underlying these misconceptions is a lack of understanding of the seriousness of the disease and the risk of complications.

The health care system sub-theme primarily concerned insurance issues and differences among health care providers, particularly physicians. Participants perceived limited insurance or a lack of insurance as a major barrier to some of their Arab-American patients, especially with regard to medications. The process of authorizing medications is frequently long and complex and is an additional barrier, even for insured patients.

Providers also described “old-school” and “new-school” physicians, with old-school physicians taking a much more holistic approach to patient care. The old-school physicians take time with their patients and discuss all health matters with them, whereas new-school physicians transfer responsibility to specialists, in this case endocrinologists. A younger physician in one of the focus groups clearly saw the benefits of the old-school approach, but explained that time limitations and financial constraints simply do not allow for the old-school type of provider-patient encounter.

Cultural factors, the fourth theme, encompassed aspects of the Arab culture that participants perceived influenced DSM in their Arab-American patients. This theme had four sub-themes: disease as weakness, family is central, food, and view of physicians. In general, providers described Arab Americans as having a general view of illness as a weakness. Patients with diabetes do not dare to tell others about their disease, due to this stigma.

One provider stated that there are many phobias in the Arab-American culture, explaining that cancer, for example, is often called by another name, just to avoid using the term. This reluctance to admit to having diabetes was considered a primary cultural barrier to DSM. Reluctance to accept the diagnosis is also reflected in resistance among many newly diagnosed patients to start prescribed medications.

The second sub-theme focused on the central significance of family in the Arab culture. The family was described as being involved in every aspect of a patient’s life. Thus, by necessity, providers felt that they need to include patients’ family members in informational sessions regarding diabetes treatment and control.

Food emerged as a cultural sub-theme that was discussed repeatedly. Food and hospitality emerged as central aspects of the Arab culture, with implications for DSM. Food was described as an ever-present temptation for patients with diabetes at every family gathering, party, or social event. Invitations into someone’s home always includes food as an offer of hospitality, and often sweets; refusing the offering is considered an insult.

Several providers also noted that the cultural importance of food is not adequately reflected in some of the educational materials available to Arab-American patients with diabetes.

The final sub-theme, view of physicians, described both positive and negative attitudes toward physicians. On one hand, physicians are respected, and patients will do what they can to please the doctor, such as attempting to keep blood glucose levels under control. On the other hand, patients associate physicians with illness because it is the physicians who make the diagnoses.

This study explored providers’ perceptions of barriers and facilitators to DSM in Arab-American patients with diabetes. Analysis revealed more culturally related barriers than facilitators. Consistent with previous research in other cultural groups, education was a key finding, and its impact on patients’ ability to self-manage their diabetes was crucial (2–5,11,16–18). Health care providers have been identified in past studies as being key facilitators of successful DSM, which was also the case in this study (3). This was especially true given the high regard that participants reported their Arab-American patients have for physicians. Providers discussed the significance of their role in management in terms of taking the extra time to go through the steps required to establish a patient’s diagnosis (3–5) and noted the importance of being able to speak the same language as their patients. Providers also discussed the importance of being part of a multidisciplinary team to better address the various aspects of DSM as noted by the National Standards for Diabetes Self-Management Education and Support (8). These providers expressed the need not just for multidisciplinary teams, but also for teams that are Arabic speaking and have an adequate understanding of the Arabic culture.

Motivational strategies such as goal-setting are key factors in managing diabetes given patients’ natural desire to do well and be held accountable. For example, the literature shows that both patients and providers discuss the importance of goal-setting (3,22,23); however, patients equated goal-setting for DSM to making New Year’s resolutions that can be difficult to stick to in the long term. This study also exemplified the difficulty in accomplishing one or two major goals compared to smaller more achievable goals. For example, losing weight is often a goal that is set but not met, although weight loss may in fact be attainable through smaller and more realistically achievable aims. Furthermore, goal-setting is an essential component of DSM and in fact is listed as a specific practice standard (8). Finally, as has been noted in previous studies (2,3,5,8), family support and involvement emerged as the most important and potentially the most effective facilitator of DSM. In this culture, families tend to be close-knit; family takes center stage, whereas lack of family support impedes patients’ ability to achieve and maintain self-care behaviors. Therefore, a family-centered approach has the potential to deliver the most effective, practical, and sustainable DSM education and support.

Barriers were numerous and included both controllable and uncontrollable attributes of care. For example, the health care system represents an uncontrollable attribute of care in terms of a lack of insurance or ability to pay for services and medication. This is well noted throughout the literature that explores barriers to DSM from both providers’ and patients’ perspectives (4,5). In addition, the diagnosis of diabetes itself, language barriers, lack of family support, and inherent cultural factors are barriers that are difficult to modify. Interestingly in this study, family was viewed as both a facilitator and a barrier; family has the potential to either enhance or impede patients’ ability to self-manage diabetes. This phenomenon also has been seen in specific subgroups within the Latino population, in which family support is viewed as a facilitator, whereas familial roles—specifically the significance of meals and food traditions in specific cultures—represent an inherent barrier (3). Although Arab Americans tend to have close family relationships, this closeness also leaves them vulnerable to appeasing family members given their familial roles and responsibilities. In addition to these more static barriers that affect DSM, fear, denial, and a lack of understanding are noted barriers that can be influenced with education and thus affect DSM in a positive way.

The main barriers to DSM from the providers’ perspective were the disease itself and patients’ denial or refusal to recognize it, reflecting the stigma of the disease. Stigma can have a profound impact on the policy and practice of diabetes, including negatively affecting patients’ psychological well-being (24). From the providers’ perspective, patients do not want to accept the diagnosis and its accompanying stigma. Although other cultures report negative views of diabetes (3,17,25), Arab-American providers described dependency on insulin as being equivalent to a death sentence. In addition, food traditions, which are central to the Arabic culture, can both hinder and facilitate DSM. Food plays an integral role in the Arab-American culture, in which family matriarchs tend to be primarily responsible for feeding and nourishing the family. Food is also important in social functions and with visitors to the extent that declining an offering of food can bring great offense to the person and family making the offering. This presents additional issues within the Arab-American culture, in which most people with diabetes do not want to provide a truthful explanation to their family or friends because of the stigma.

Cultural aspects also included overlapping themes that both facilitated and presented barriers to DSM. Physicians’ attitudes about a diabetes diagnosis can be detrimental to patients because providers often referred to an official diagnosis as a major weakness. In the literature, the importance of providers’ disposition when providing a diagnosis has been noted (5) and can have an immediate effect on how a patient responds to the diagnosis and the need for DSM. Although many Arab Americans revere the role of physicians, there is still a gap in information and education that occurs between patients and providers with regard to DSM specifically (15).

These results suggest that DSM education for Arab Americans will be most effective if developed and delivered in a manner consistent with the cultural facilitators and barriers noted by providers. Providers themselves reported the need to allocate time during clinical encounters with patients to provide DSM education and motivational strategies; establishing attainable patient goals after performing an appropriate assessment and developing a plan of care with follow-up was perceived as a positive motivational method to address DSM with Arab Americans. Providers also noted their lack of time and resources and reported that patients require multidisciplinary care to ensure adequate DSM education. Including patients’ family for support of DSM, while carefully acknowledging both the positive and negative effects of family given the strong culture of mealtime and familial roles within the Arab-American culture, were also important aspects to consider with DSM. In addition, providers described the crucial role of education in addressing diabetes stigma within the Arab-American culture and its effects, including diagnosis denial and subsequent lack of adherence to DSM. Furthermore, training and education for patients and families was perceived to be more effective when it occurred jointly (i.e., individually offered to patients and their family in face-to-face sessions). These perceived implications, if implemented, could potentially have a positive effect on Arab-American patients’ and families’ understanding of diabetes and promote the importance of DSM.

These findings are limited in that the study included a small sample of Arab-American physicians and pharmacists practicing in one geographical area; thus, they may not be generalizable to all health care providers caring for Arab-American patients in other contexts.

The low number of participants per group could have limited interaction among the participants. Further exploration of providers’ and patients’ perceptions of cultural influences on DSM should be evaluated to optimize outcomes.

The information presented here provides a necessary piece of the puzzle toward improving patient outcomes in Arab-American patients with diabetes. Future research to examine a broader sample of health care providers and Arab-American patients with diabetes will provide a more holistic view of DSM, enabling a better understanding of the range of perceptions of cultural factors influencing the adoption and adherence to DSM skills and behaviors.

No potential conflicts of interest relevant to this article were reported.