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DOI: 10.1177/0145721705284372
Using Focus Groups to Develop a Culturally Competent Diabetes Self-management Program for Mexican AmericansFrom the University of Arizona College of Nursing, Tucson (Dr Vincent); the University of Colorado Health Sciences Center, Denver (Dr Clark); and the Community Health Network, Denver, Colorado (Ms Sanchez). Ms Zimmer is an independent consultant. Correspondence to Deborah Vincent, PhD, RN, FAANP, University of Arizona College of Nursing, 1305 North Martin, PO Box 210203, Tucson, AZ 85721-0203 (dvincent{at}nursing.arizona.edu).
Purpose The purpose of this study was to describe factors that facilitate or hinder diabetes self-management and elicit participants' preferences and recommendations about the essential components of a culturally competent diabetes self-management program. Methods Latino patients with type 2 diabetes and their family caregivers were interviewed in focus groups. Four focus groups consisted of patients, and 2 groups consisted of family caregivers for a total of 40 participants. Participants were assigned to groups based on break characteristics of gender and preferred language. Results "Being in the dark" emerged as an important concern, and patient respondents wanted timely access to information that they deemed understandable about how to manage their diabetes. Family members' support and understanding were crucial in maintaining lifestyle changes. Patient and family caregiver participants wanted a self-management program to incorporate information on how to modify traditional foods, home remedies, and stress management. Preferences for information delivery included group didactic and interactive sessions, written information, and videotapes. Higher tech-nology strategies using computers were not seen as useful. Conclusions Culturally competent diabetes self-management for Latinos should incorporate the family and include techniques for stress management as well as diet modification. Information delivery should include a variety of techniques.
Diabetes mellitus has reached an epidemic magnitude in the United States. This serious and potentially debilitating chronic disease now affects approximately 18 million Americans, nearly 9% of the adult population in the United States.1 Latinos are especially hard hit by diabetes as the risk of developing type 2 diabetes for Latinos is 2 to 3 times that of non-Latinos.2 Findings from several studies indicate that effective self-management and glycemic control can decrease diabetes complications.3,4 However, the challenge is to transpose self-management programs developed in non-Latinos into workable processes for Latino populations. For any ethnic group, successful diabetes self-management depends on patients' incorporating more healthful principals into their traditional patterns of eating and activity.5 Some researchers suggest that Latinos have difficulty in achieving adequate glucose control,6,7 leading to the labeling of Latinos as noncompliant. Most patient education and self-management programs have focused on white, middle-class populations and have not taken cultural differences into account in messages about glycemic control or expectations for adherence to behaviors that foster glycemic control.6 Patients have long been known to view their illnesses differently from their health care providers, sometimes to the frustration of both. The classic work of Arthur Kleinman used the explanatory model concept to emphasize that patients bring their own ideas of illness severity, trajectory, and treatment to the clinical encounter.8 Explanatory models have since been used by nurses to understand the patient's experience and expectations of diseases such as arthritis, tuberculosis, and diabetes.9-11 Patients and providers differ in their views about what constitutes essential diabetes knowledge, with patients emphasizing social and lifestyle problems and providers focusing on pathophysiological aspects.11,12 Studies conducted with a Latino population on the Texas-Mexico border, which included cultural modifications to diet and language, demonstrated improvement in diabetes knowledge and glycemic control.2,6 It is possible that Mexican American cultural beliefs about diet, weight, and exercise and beliefs about the importance of family may all contribute to difficulties in achieving glycemic control and may explain the ineffectiveness of traditional patient education programs.6,13 A more complete understanding of how to address these beliefs and which elements of Latino culture need to be incorporated into a diabetes self-management intervention is needed. The purpose of this study was to describe factors that facilitate or hinder diabetes self-management and elicit participants' preferences and recommendations about the essential components of a culturally competent diabetes self-management program. Research questions were (1) What factors do informants describe as enhancing and hindering diabetes self-management? and (2) What recommendations do informants have for developing a diabetes self-management program that is culturally competent for Latinos?
Research Design A qualitative descriptive design was implemented in which focus groups were used to elicit data from patients with type 2 diabetes and their family caregivers. Focus group methodology was suited to this particular study because it allowed for relatively rapid assessment of the target groups' diabetes experiences and program preferences. Focus groups are useful in understanding the population to be affected by an intervention14 and are an appropriate method for understanding how the target groups think and learn about health behaviors.15 Focus groups are especially useful for understanding issues, cultural beliefs about lifestyle, and the importance of family.14 Focus groups can be used to identify barriers to seeking care and diabetes self-management. In this study, focus groups aided in eliciting suggestions for modifying a diabetes self-management program to improve the cultural competence of the program.
Development of Moderator's Guide Content validity of the focus group guide was established by a literature review of diabetes self-management interventions and by consensus of the research team. Questions focused on factors that facilitate or hinder diabetes self-management, cultural aspects that might make diabetes self-management more challenging, and what components of a diabetes self-management program should be modified or added to be more specific for Latinos of Mexican American origin (Table 1). Beliefs about facilitators or hindrances and preferences and opinions about desired diabetes self-management components were explored in each focus group until information redundancy, the point of saturation, was reached.16
Sample Eligible participants had to be between 18 and 70 years of age. To ensure some diabetes self-management experience, patient participants had to have been diagnosed with type 2 diabetes for at least 1 year. Latino ethnicity was ascertained by asking potential participants if they self-identified as Latino, Hispanic, Chicano, Mexican, Mexican American, or American of Mexican descent. Family caregiver participants could be of any ethnic background. Caregivers were spouses, daughters, and daughters-in-law of patients with diabetes. Caring for a person with diabetes was defined as providing physical, emotional, and/or financial support such as transportation, meal preparation, and assistance with medication. Participants were recruited from flyers posted in the waiting area and by personal invitation by providers (physicians and nurse practitioners) who had been oriented to the purpose and goals of the study and to the participation criteria. A study team member was present at the clinic at least 3 days per week throughout the recruitment period. When a potential participant expressed interest, the study team member personally explained the study and answered questions about requirements including the date, time, and location of the focus group. In addition, all potential participants received a follow-up telephone call from a bilingual member of the study team to provide further information, answer questions, and reconfirm the participant's availability on the scheduled date and time of the focus group. The personal approach and explanation of the study by a study team member was found to be the most successful recruiting strategy. Flyers generated no responses, and providers made no referrals to the study in the absence of a study team member. Approximately 30 men and women were approached for the patient focus groups, and 26 agreed to participate. For the family caregiver groups, approximately 25 men and women were approached, and 22 agreed to participate. The final study sample consisted of 40 participants, 20 patient and 20 family caregivers. Lack of time was given as the major reason for refusing to participate. Each participant received a $25 certificate to a local grocery store as compensation for participating.
Data Collection Procedures The sessions began with an explanation of the purpose of the meeting. A written consent form, including permission to audiotape, was approved by the Institutional Review Board and was read aloud by the moderator and reviewed and signed by each participant. Ground rules for each session were explained: there are no right or wrong answers, everyone's opinion is important, anyone who wants to speak should have a chance, and what is said in the groups is confidential. Demographic data were collected with a 5-item questionnaire in either Spanish or English, depending on the language preference of the group. All sessions were audiotaped, transcribed, and, if necessary, translated from Spanish to English by a bilingual member of the research team who is experienced at transcribing focus group audiotapes. Two additional members of the research team observed each session and took field notes. This allowed for comparisons of the mood of each session, body language, and identification of themes that seemed to be emerging. Debriefing sessions took place immediately after each focus group and again at subsequent team meetings in which the accuracy of the transcripts was verified.
Data Analysis All members of the research team read and approved drafts of the transcripts. Transcripts were then imported into Atlas/Ti software.18 This program is used in computer-assisted analysis of qualitative data. Analysis of the demographic data was conducted using SPSS version 11.5.19
Size of the groups varied from 2 to 14. The 2 focus groups for men, both English speakers and Spanish speakers, were the smallest groups. Not surprisingly, men were most difficult to recruit, and only 2 men attended either of these groups. In anticipation of these difficulties, the researchers over-recruited men, but male participation was very low. The average age of all participants was 47. The patient group was slightly older (mean = 53) than the mean age of 41 of the caregiver group (Table 2). Slightly more than half (53%) were married, and 50% had at least some high school education. Most of the sample (67%) reported a yearly income of $20 000 or less, and only 2 participants (5%) reported a yearly income of more than $40 000.
Being in the Dark Both patient focus groups and caregiver groups wanted more information on symptoms and complications of diabetes, how to manage the disease, what to expect, and coping strategies. There were lively discussions in the groups about advice the participants would have liked, advice they were given, what they wanted their family members to know, and what they would advise others who were diagnosed with diabetes. Several participants said they wanted to know, "What are the symptoms that a person has when they are about to get diabetes?" Another expressed her confusion at the time she was diagnosed with diabetes. "When I was diagnosed with diabetes, they told me I was a diabetic, they gave me pills and stuff and sent me home. I was like in the dark." Although nearly all of those in the patient group stated they had received some information on diabetes and self-management from health care providers, many relied heavily on family or friends for information. This often resulted in confusion for patients. One participant stated, "They could have told me about the liver and all that stuff, or whatever hurts you inside. The eyesight and all that stuff.... And you know, maybe I would have took my medication like they told me to, instead of saying, `I'll take it tomorrow or the next day.'" Health care providers were not always available to provide answers or guidance as questions or problems arose. Timeliness of being able to access information was a common complaint. Participants wanted access to information when they were confused or unsure. Another participant said, "I'd like to see someone when you need to, or when you want to, instead of making an appointment and having to wait for 2 or 3 weeks or whatever."
Stress and Culture In addition, they stated that Latinos seemed to experience more stress or have more stress in their lives, perhaps as a result of both culture and the centrality of family. As one woman stated, "Stress causes diabetes to go up.... Maybe 1 out of 100 women could tell me their husbands don't stress them out." Yet another woman noted, "Or if you don't have a husband, someone that's living with you, a daughter and son-in-law, maybe that family is stressing them out. You never know, we are a very stressful people."
Culture and Diet Others expressed confusion about how many carbohydrates they could eat. Participants stated that they thought the traditional diet of rice, beans, and tortillas contained too many carbohydrates but that it was difficult to not eat these foods. Giving up foods they liked often created feelings of anger, frustration, or sadness. As one person said, "I gave up a lot. When you realize you have this (diabetes) and you can't eat it. You feel worse. Why did I have to get this?"
Family Support Is Important for Successful Self-management
Self-management Challenges
What I Want in a Program Participants suggested visual aids such as bilingual reading materials and videotapes to improve information access. Another suggestion was for clinics to create a diabetes "hotline" that patients and family members could call and get their questions answered by a nurse or other health care worker. Trying to get their questions answered during clinic visits was viewed as challenging and not timely. One woman wanted someone who would say, "How do you feel about your diabetes? Do you have any questions?" Another agreed and noted, "Sometimes I have questions and I don't know where to go." The digital divide became evident when participants were asked about using computers for delivering information or communicating with self-management group participants. None of the focus group members used computers, and none expressed an interest in communicating via e-mail or chat rooms. In addition, they expressed no interest in using computer CDs to learn more about diabetes self-management. One woman noted, "I don't know how to use a computer. I don't have the slightest idea." Other suggestions were to include family members in the self-management groups and to use low-literacy teaching materials. Several participants suggested that diabetes self-management programs should have prizes for keeping sugar levels steady and low as an incentive for keeping subjects interested and actively participating. All groups suggested that cooking demonstrations and low-fat adaptations of traditional Mexican American foods would be useful in adapting a self-management program to the Mexican American culture. Some of the patient groups also expressed a desire to learn how to adapt and cook other ethnic foods, such as Chinese food. Respondents suggested that didactic diabetes self-management content be delivered by a professional with specific diabetes expertise. However, they also desired access to a role model, someone with diabetes who was successful at self-management and would understand the challenges. Participants wanted culturally relevant information on activity. Everyone agreed that walking was easy and not culture bound or seen as expensive. In addition, they wanted dance, such as salsa dancing, incorporated as an appropriate activity. Activities such as running, swimming, or bicycle riding were seen as too "Anglo" and not something they would be likely to incorporate into their daily lives. Several groups discussed exercising at the community recreation center, but the cost, although low, was still prohibitive. "Cost is a big deal. Sometimes you don't have the money, you can't go." Remedios, or home remedies, were discussed by all groups. Both English and Spanish speakers talked about using nopales (prickly pear cactus pads), herbal teas, and a drink made of lemons and eggs to treat diabetes. "Nopales are good for you." "Anything that's like real bitter is supposed to bring that sugar down in your body." Others discussed hearing that Yerba del Burro (donkey's herb) was good for diabetes, but none of the focus group members had actually tried it. In fact, many said they did not use these remedios themselves but knew of friends and family members who did. Nevertheless, all of the groups thought information about remedios was important and wanted it included in diabetes self-management programs.
The focus groups were an efficient method of obtaining information about an underserved population's experience of diabetes self-management facilitators and barriers and preferences for a diabetes self-management intervention. Access to information emerged as an important factor that could either enhance or hinder diabetes self-management. Information was viewed as difficult to obtain and challenging to sort through. Computer illiteracy and limited personal and financial resources were also viewed as barriers to successful diabetes self-management. Participants often relied on friends and family for information when they could not get the desired information from their health care provider or did not understand the information given. Participants suggested certain cultural adaptations that would enhance the cultural competence of a diabetes self-management intervention. Specifically, incorporating modifications to traditional high-fat Mexican American dishes was seen as useful. Cooking demonstrations and tasting of these adapted recipes before serving them to family members was also viewed as useful. Activity modifications should emphasize walking and include dancing, specifically Salsa dancing. The effects of stress on glycemic control and techniques for managing it should be emphasized in a self-management program. Because of strong family attachments, it is important to include significant family members in self-management interventions and to educate the family about needed lifestyle changes. Diabetes self-management education programs should be led by a health care provider who would be viewed by the target population as an expert. However, a lay person who was successful in managing his or her diabetes would be helpful in translating the expert's information into everyday use. Limitations of this study are sample size and data collection occurring at only 1 community clinic site. In addition, patient respondents were not asked about length of time since diagnosis with diabetes. Nevertheless, study findings suggest that including cultural modifications and including the family in diabetes self-management interventions are important for Mexican Americans. More research is needed on the self-management issues of Mexican Americans on the effectiveness of culturally competent diabetes self-management programs. However, culturally competent diabetes self-management programs may help to alleviate the confusion and frustration of managing a chronic disease such as type 2 diabetes and result in improved outcomes for Mexican Americans.
This study was supported by a grant from the University of Colorado, School of Nursing.
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