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Dietary Challenges of Managing Type 2Diabetes in African-American WomenCarolyn J. Murrock RN PhD a , Evelyn Taylor MS RD LD b & DeborahMarino PhD MPH RD ba College of Nursing , University of Akron , Akron , Ohio , USAb School of Family and Consumer Sciences , University of Akron ,Akron , Ohio , USAAccepted author version posted online: 10 Dec 2012.Publishedonline: 21 Mar 2013.
To cite this article: Carolyn J. Murrock RN PhD , Evelyn Taylor MS RD LD & Deborah Marino PhD MPHRD (2013) Dietary Challenges of Managing Type 2 Diabetes in African-American Women, Women &Health, 53:2, 173-184, DOI: 10.1080/03630242.2012.753979
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Women & Health, 53:173–184, 2013Copyright © Taylor & Francis Group, LLCISSN: 0363-0242 print/1541-0331 onlineDOI: 10.1080/03630242.2012.753979
Dietary Challenges of Managing Type2 Diabetes in African-American Women
CAROLYN J. MURROCK, RN, PhDCollege of Nursing, University of Akron, Akron, Ohio, USA
EVELYN TAYLOR, MS, RD, LDand DEBORAH MARINO, PhD, MPH, RD
School of Family and Consumer Sciences, University of Akron, Akron, Ohio, USA
The purpose of this qualitative study was to explore the challenge ofself-management of diet in African-American women living withtype 2 diabetes. Specifically, the women were asked to talk aboutdietary challenges of managing diabetes in the context of theirpersonal lifestyle factors, such as daily routines, family responsibil-ities, and individual needs. Using a phenomenological approach,a descriptive, exploratory design was implemented using four facil-itated focus groups. A convenience sample of 24 African-Americanwomen was recruited from a Family Practice Center in theMidwest. Data from each of the four focus groups were audiotapedand transcribed verbatim. Themes were compared and contrastedwithin and across each of the four focus groups until consensuswas reached. Four themes were identified: frequent difficulties inchanging dietary habits, need for individual guidance, support,and misinformation gaps. Overall, the participants expressed theneed for more attention to the personal lifestyle factors they viewedas obstacles to managing diabetes.
KEYWORDS African-American women, type 2 diabetes, nutri-tion, dietary education, glucose control
Received June 29, 2012; revised November 12, 2012; accepted November 25, 2012.Address correspondence to Carolyn J. Murrock, RN, PhD, College of Nursing, University
of Akron, 209 Carroll Street, Akron, OH 44325-3701. E-mail: [email protected]
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INTRODUCTION
Dietary management is the cornerstone of diabetes self-management and fol-lowing appropriate dietary guidelines may result in good glycemic control,weight loss, and blood pressure management (American Association ofDiabetes Educators, 2009). Such dietary management requires many deci-sions several times each day to determine what to eat, when to eat, andhow much to eat. For African-American women with diabetes, managingdietary habits is often difficult, even after attending diabetes education classes(Anderson-Loftin et al., 2005). While approximately 50% of individuals diag-nosed with diabetes receive diabetes education, only about 16% reportfollowing the recommended self-management activities, especially chang-ing dietary habits (Funnell, 2006; Mensing et al., 2007). Poor adherence toself-management activities suggests that diabetes education programs mustbe altered to have a greater impact on dietary management skills. Typically,diabetes education is delivered as a formalized, structured program via lec-ture, pamphlets, computer-based programs, or audio-visual presentationsthat place patients in the passive role of recipient (New, 2010). It oftendoes not allow patients to critically think about their own daily routines,responsibilities, and individualized needs or be involved in the adoptionof dietary management behaviors. This frequently results in patients findingways to live “around” diabetes instead of living “with” diabetes (New, 2010).Thus, exploring the lived experience of African-American women with type2 diabetes in the context of their daily routines, family responsibilities, andindividual needs is essential to help them learn to live “with” diabetes.
Nearly 2.7 million African-American adults have diabetes, which affects25% of African-American women 50 years or older (American DiabetesAssociation, 2011). Further, African-American women often have the relatedconditions of obesity and high blood pressure and are more likely todevelop the associated complications of heart disease and stroke than areAfrican-American men with diabetes (American Heart Association, 2010).Thus, it is particularly important to improve health outcomes in African-American women who have higher than average incidence, prevalence, andcomplications of diabetes.
Studies have shown that diabetes education that incorporated foodpreferences (Anderson-Loftin et al., 2005) and problem-solving skills (Hill-Briggs et al., 2003) were helpful in managing diabetes in African Americans.However, the family responsibilities of purchasing healthy foods, jugglingerratic work and family schedules, and time constraints to shop, prepare, andserve meals were rarely addressed (New, 2010; Carthron et al., 2010). Theselifestyle factors are particularly salient for African-American women. Studieshave also shown that support from family and friends (Anderson-Loftinet al., 2005; Roseland et al., 2008) and health care professionals (Oftedal,
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Challenges of Managing Diabetes 175
Karlsen, & Bru, 2010) for making the necessary dietary changes is oftenlacking for African-American women. The purpose of the present qualitativestudy was, therefore, to explore the challenges of dietary management inthe context of the daily routines, family roles, and responsibilities of African-American women with diabetes. Gaining insight into their personal lifestylefactors will be a first step in understanding how these dietary challengescan be addressed to meet their needs, improve glycemic control, and reducecomplications.
METHODS
Design
This qualitative study used a phenomenological approach to describe thewomen’s experiences of trying to manage diabetes in the context of theirpersonal lifestyle factors. As the philosophical framework, phenomenol-ogy seeks to elicit and describe the meaning of human experiences(Speziale & Carpenter, 2003). This descriptive, exploratory study used focusgroups to explore the women’s experiences of living with and managingdiabetes.
Sample and Setting
A convenience sample of African-American women with type 2 diabeteswere recruited from a Family Practice Center at an urban Midwest hospi-tal that provided care to approximately 600 patients with diabetes, 40% ofwhom were African Americans. Participants were recruited via flyers thatwere posted in the Family Practice Center and by the dietitian who workedwith diabetes patients in the Family Practice Center. Interested volunteerswere also able to phone the research assistant as the phone number wasposted on the flyers. Inclusion criteria were (1) African-American womandiagnosed with type 2 diabetes more than one year ago; (2) aged 18 years orolder; (3) able to read and write English; and (4) self-reported receiving someform of diabetes education about managing their diabetes (either individuallyor in a group setting with a dietitian in an outpatient setting). Exclusion crite-ria were (1) pregnant or breastfeeding; (2) currently enrolled in a weight lossprogram (Jenny Craig, Nutrisystem, Weight Watchers, etc.); and (3) diagnosedwith severe mental illness. During recruitment, 40 potential participants werescreened for eligibility, and 33 of the 40 were eligible for the study. Of the33 eligible participants, 24 (72.7%) attended the focus groups. The focusgroups were conducted in a private conference room in the Family PracticeCenter. Approval for the study protocol was obtained from the InstitutionalReview Board (IRB) at the Midwest hospital, and written informed consent
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was obtained by the principal investigator (PI) from all participants prior tothe beginning of each focus group.
Procedures
Once potential eligible participants were identified by the dietitian, the PIapproached them in the exam room, explained the purpose of the study, andanswered questions. The potential participants were informed of the datesand times of four focus groups and selected which focus group they wantedto attend. Each woman received two reminder phone calls from the researchassistant: one week prior and one day before the chosen focus group. Also,each woman was given the phone number of the research assistant to callif she decided not to attend or if family members had questions. At thebeginning of each focus group, the purpose of the study was explained bythe PI, and each woman completed demographic information and signedan informed consent, consent to be audiotaped, and confidentiality agree-ment forms (approved by the IRB). The focus group was facilitated by anAfrican-American dietitian who was also a Certified Diabetes Educator (CDE)and had experience in facilitating focus groups. The facilitator led the partic-ipants in a guided conversation to explore the lived experience of managingdiabetes on a daily basis (see Appendix). Each woman was asked to respondto the first question, and if necessary, the facilitator used additional probingquestions for clarification and elaboration of responses. The remaining ques-tions were presented in the same manner. Also, the women were encouragedto offer suggestions and recommendations to make diabetes education morerelevant to their needs.
Data Analysis
Each of the four focus groups was audiotaped with a digital recorder, andeach audiotape was transcribed verbatim by a transcriptionist. The data werereviewed verbatim against the transcripts for accuracy. A multistep analysisplan was used to identify emerging themes. First, each transcript was readseveral times independently by each analysis team member (PI, Co-PI, andqualitative consultant) who coded keywords and phrases. Coding was themeans of identifying important pieces of the interviews and summarizingthese coded pieces into preliminary themes from each focus group. Next,each analysis team member analyzed text line-by-line to refine the themes.During this time, the analysis team members were masked to each other’scoding of the data. Then, the analysis team met in research team meetingsand discussed their identified themes from each of the four focus groups. Theidentified themes were then compared and contrasted for recurrent themeswithin each focus group and across the four focus groups until consensuswas reached.
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RESULTS
Four focus groups accommodated 24 participants, with a mean age of47.7 years (SD = 15.2, range 19–84 years) and mean years since diagno-sis of diabetes of 8.9 years (SD = 9.4, range 1–35 years). The majority of theparticipants were single (58.3%) and earned less than $20,000/year (75%).Most of the participants had graduated high school (33%), attended college(21%), or earned an associate or technical degree (17%). Each focus grouplasted between 45 and 75 minutes, and each participant was given $20 as atoken of appreciation for their time and to help cover the cost of transporta-tion and parking. Based on transcript review, four themes were identified:(1) frequent difficulties in changing dietary habits, (2) the need for individ-ualized guidance, (3) the need for support, and (4) the need for continuingeducation to correct misinformation and reduce gaps in diabetes knowledge.
Theme 1. Frequent Difficulties/Struggles of Managing Diabetes
At the beginning of each focus group, the participants were a little hesitantto discuss their frustrations and challenges of managing diabetes. As thediscussion continued, the participants were able to talk about themselvesand allow each other the opportunity to speak freely. As a result, it becameevident that most of the participants struggled with the perceived need to cutout sweets, pasta, and bread. They did not understand how to be flexiblewith their meal planning to incorporate these foods and still manage theirdiabetes. Furthermore, their perception of a “diabetes diet” was associatedwith deprivation rather than building skills and strategies to successfully usefood as a tool to manage their blood sugar and diabetes:
I’ve been cutting back on, like I used to like a lot of sweets I think thehardest part for me was the sweets.
I pretty much changed the type of bread and types of pasta that I use inthe home.
Many of the participants stated that they counted carbohydrates andread labels to assist them in making food choices. However, they identi-fied difficulty or uncertainty with the specifics of applying this informationto moderate food intake and managing eating frequency. These topics ofdiabetes education suggested the women’s need for a more individualizedapproach as questions arose about how to manage diabetes and implementdietary modifications into their lives. Other frequently reported struggles forparticipants included a desire for late-night eating, inconsistent access tohealth professionals, limited motivation and time for exercise, difficulty inmanaging comorbidities, and the high cost of fruit and vegetables:
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The hardest part for me, is cause I work nights, do, it’s kinda hard, likeyou want to snack all night.
The hardest thing for me is forcing myself to exercise cause I really don’tlike it.
It’s eating right is the problem now cause they tell you, eat a lot of fruitsand vegetables, and it’s expensive, and if you buy it in bulk before youeat it all it’s gone bad.
Theme 2. Need for Individualized Guidance
A recurrent theme was the need for more individualized guidance. Generalinformation and diabetes education were respected and utilized by partici-pants. However, many reported difficulty in adapting the information to theirparticular needs:
Because I need help in planning meals. Whatcha going to eat and stufflike that.
They did not personalize a meal plan for me. I needed somebody to sitdown with me.
Like if they would have explained it more or at least asked me what I ateevery day or broke it down that way, to help.
Most seemed to have a general understanding of basic diabetes managementbut were confused or unable to apply this information to their specific lifecircumstances. For example, participants discussed uncertainty about howto adjust their eating pattern when their routine was interrupted by spe-cial events, celebrations, and other changes. Others felt that their diabetesmanagement was incompatible with the food and meal preferences of theirfamilies:
It’s hard for me to, um like I said I’ve got 3 teenagers at home. So they,you know, want to eat any and everything. When I cook it’s hard for me,you know, um, to count carbs. Cause they’re like Mom, this is nasty!
They tended to view their own dietary needs as being separate from fam-ily needs, which required additional planning, preparation, and financialresources. It became apparent that managing daily routines, finances, anderratic work schedules could be addressed if their personal lifestyle factorswere taken into consideration.
The majority of participants received basic diabetes education by aRegistered Dietitian early in their diagnosis, in the outpatient setting, or from
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Challenges of Managing Diabetes 179
their physician during an office visit. A consistent finding was that this basicdiabetes education appeared to provide most with a working knowledge ofcarbohydrate counting and label reading. However, participants varied in theamount and level of their understanding and applying this knowledge. Someparticipants expressed frustration with the diabetes education they receivedas it was not individualized to meet their specific needs to help them managetheir diabetes:
And there was a dietitian here, uh, with Family Practice. And nice woman,very nice woman but it was almost as if she. There was no understandingbetween her and myself. When I was going to leave that office it’s almostlike-ok-I’m gonna tell you boom, boom, boom, and that’s what you do.
So I went to the educator and like her, they give you a book, tell youthis, you eat this, you read this label and that’s all. To me—it didn’t reallyhelp me.
In addition, many felt that the diabetes education was hurried, fragmented,and not helpful.
Theme 3. Support Needed
Another theme was the need for support to begin and continue dietarychanges necessary for diabetes management. The participants led busy livesas mothers, grandmothers, and employees who tried to make dietary changesbut expressed a strong desire for some type of support. Even after attendingdiabetes classes, some did not feel that they really had a clear understandingof how to manage their diabetes or where to turn for support when theyneeded it:
There’s like no follow-up, there’s no check-up and then when you comein here to talk to the physician, if it’s the same one, then I don’t know,it seemed there was always a disconnect. Always felt like I was on myown.
But it would be so helpful if they could get you all to go back to themclasses.
A few participants stated they had a family member/friend attend dia-betes education classes with them but rarely mentioned them as a primarysupport:
I had a, well, my boyfriend at the time came to the classes with me andhe helped me. You know, prepare everything and count carbs and stufflike that. It helped me because I had someone to help.
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Also, none of the participants said that a family member/friend helped themgrocery shop, plan, or prepare meals. However, the participants often men-tioned that health professionals provided the emotional support that waslacking from family and friends.
I had great support from Family Practice.
When I come in for visits every 3 months my doctor gives me information.I fill out the yellow form when we come in for a visit, and she asks mewhat I am expecting to get out of the visit. I tell her what I want and shegives me the information.
It was apparent that an essential component of diabetes education was theneed to develop support from family, friends, and health care professionals.
Theme 4. Misinformation or Gaps in Diabetes Education
Another theme was diabetes misinformation or gaps in knowledge, regard-less of the diabetes education received at diagnosis. The participantsdiscussed that some of their preconceived ideas about diabetes were rootedin what they had learned about diabetes from parents, family members, orfriends. Some of the diabetes knowledge learned passed down from gen-eration to generation was attained at a time when patient education wasless patient-centered, less focused on self-management, and more restric-tive. Consequently, outdated information about diabetes was circulatinginformally but carried credibility with the participants, even after attend-ing diabetes education classes. Comments made by participants suggest thatfurther depth and breadth of understanding about diabetes was needed. Forexample, many participants did not grasp the seriousness of their conditionor realize how proper diabetes self-management could delay or amelioratecomplications. Many spoke with emotion about family members or otherswho were blind, lost a limb, or were on dialysis due to poor diabetesmanagement:
Every African-American woman in that nursing home except for mymother had one leg, one leg. The whole nursing home. So when yougo to a nursing home, and you see all these black women rolling aroundin wheelchairs with one leg and something. And that’s just kinda wokeme up to say you know what? You can’t depend on Joe Blow to lookafter you.
I saw this young lady, about 26 years old, she came in and it scaredme, cuz I’m like, she’s younger than me, and she done lost her limbs.
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Because she was not taking care of herself from diabetes. And I lookedat her, I said, whew, I said, Lord, I don’t ever wanna be like that.
Some believed that taking medications was all that was necessary tomanage diabetes while others did not feel that they really had diabetes orwould have negative consequences until they had to start using insulin:
The time I know something is wrong was when I would bottom out.I just thought I could take the pills anytime I wanted, you know, just aslong as you took them. I didn’t have enough sense to know that I neededto follow through every day and take the pills at the same time.
They wanted me to eat 6 times a day. But I ate the wrong things, and myblood sugar was always high. They tried to explain to me the importanceof the 6 meals but now I’m supposed to take insulin shots 6 times a day.They want me to take a shot every time I eat. That’s too much, and itcan’t be good for me. But I take them shots cuz I don’t want to lose mylegs.
Even after attending diabetes classes, some did not feel that they reallyhad a clear understanding of how to manage their diabetes. Most participantsthought it would very helpful to have some form of continuing educationto fill the information gap. As a result, continuing education to overcomemisinformation and reduce gaps in knowledge was needed to have a betterunderstanding of the connection between poor diabetes management andnegative health consequences.
DISCUSSION
The participants in this qualitative study provided insight into the everydayexperiences of African-American women living with and managing diabetes.Many were relieved and surprised to know that others were experiencingsimilar dietary challenges, were thankful for the chance to discuss their expe-riences during the focus groups, and felt like someone actually cared aboutthem. Although the focus group was a tool for gathering qualitative researchand not a means for providing didactic information, it appeared that eachfocus group provided a source of support and comfort to participants thatthey felt lacking.
The participants voiced that the most difficult part of managing dia-betes was changing dietary habits, which is supported by other studies(Murrock, Higgins, & Killion, 2009; New, 2010). Many articulated the needto have basic and understandable diabetes education, especially early inthe diagnostic and treatment process, to help them feel less overwhelmed
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and more in control of the entire self-management process. The basic skillsfor dietary management that participants found helpful were counting car-bohydrates and reading labels. However, they often felt frustrated by thedelivery of the diabetes education and that it was not helpful for develop-ing self-efficacy skills for managing their diabetes. This is comparable to astudy of African-American women with diabetes who expressed that diabeteseducation was inadequate preparation for diabetes self-management (Burns& Skelky, 2005). Immediately following their diagnosis, many were copingwith the emotion of learning about their chronic disease, were vulnerableto feeling overwhelmed, and may not have had enough diabetes educationnecessary to grasp the complexities of managing diabetes. However, somesought support from their health care professionals since many were singleand did not mention family as a source of support. Health care professionalsoften provide the support necessary for making dietary changes for diabetesself-management (Carthron et al., 2010; Roseland et al., 2008).
In addition to learning to manage diabetes, participants in this study stillhad to go on with their lives as mothers, grandmothers, and employees. Theroles or family responsibilities they had before diagnosis did not change afterdiagnosis. Many participants had mastered basic skills but did not progressto the more advanced skills of self-management, such as problem-solving,by making adjustments to unexpected changes in daily routines or work andfamily responsibilities. As a result, the participants felt unsure about theirself-management skills, regardless of how long they had been diagnosed,and expressed a need for some type of continuing education. From theirresponses, the need for continuing education was to help them improveself-efficacy for dietary management by learning to apply it to their dailycircumstances. They did not know how to budget for meals or plan a menuthat included their families’ needs and food preferences. Learning to applyit to daily circumstances would empower them to use these same skills forother life events, like sudden changes in work schedules or family gatherings.As a result, health care professionals should assist individuals with diabetesto move beyond the basics and empower them to develop more advancedskills of self-management through continuing education of key concepts,and reinforcement of basic skills and problem-solving skills to maintaindietary changes necessary for good diabetes management (Oftedal et al.,2010).
Limitations
This study had a number of limitations. First, some of the women may haveresponded to questions in the focus groups in socially acceptable ways soas not to cause any controversy or personal embarrassment. Also, the smallsample of participants were recruited from one family practice center, thusmay not have been a representative sample of African-American women
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with diabetes, and thus the results cannot be generalized to other African-American women. Finally, many participants were single heads of householdand earned less than $20,000, which may have affected their access to care,diabetes supplies, and financial resources.
CONCLUSION
This study provided insight into the daily challenges of dietary managementskills in a small sample of African-American women living with diabetes.Understanding the dietary challenges in the context of their daily routines,family responsibilities, and individual needs were a beginning step for devel-oping strategies to enhance their dietary management skills. Based on thewomen’s responses, dietary management strategies should begin at diagno-sis, continue throughout their life experiences with diabetes, and includesome type of support from family, friends, and health care professionals.Recommendations for the future are that larger, more representative studiesshould be undertaken to determine effective ways to enhance the dietarymanagement skills of African-American women to improve glycemic controland reduce complications.
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American Association of Diabetes Educators. 2009. AADE guidelines for the prac-tice of diabetes self-management education and training. Diabetes Educator35(Suppl 3):85S–107S.
American Diabetes Association. 2011. Diabetes statistics for African Americans:2011 National Diabetes Fact Sheet. Retrieved April 26, 2012, from http://www.diabetes.org/diabetes-statistics/african-americans.jsp.
American Heart Association. 2010. Heart & stroke 2010 statistical update. Retrievedfrom http://www.heart.org/HEARTORG/General/Heart-and-Stroke-Association-Statistics_UCM_319064_SubHomePage.jsp
Anderson-Loftin, W., S. Barnett, P. Bunn, P. Sullivan, J. Hussey, and A. S. Tavakoli.2005. Soul food light: Culturally competent diabetes education. DiabetesEducator 31(4):555–63.
Burns, D., and A. H. Skelky. 2005. African American women with type 2 diabetes:Meeting the daily challenges of self care. J Multicult Nurs Health 11(3):6–10.
Carthron, D. L., T. M. Johnson, T. D. Hubbart, C. Stricland, and K. Nance. 2010. “Giveme some sugar!” The diabetes self-managment activities of African Americanprimary caregiving grandmothers. J Nurs Scholarship 42(3):330–7.
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APPENDIX 1: GUIDED CONVERSATION QUESTIONS
1. Please tell us one thing that you would like to share about yourself.2. What are some things that you have been able to do to better take care
of your diabetes?3. What is the hardest part about taking care of your diabetes?4. Have you made any changes in how you eat to help manage your dia-
betes? Tell us about them. What changes were easy and what changeswere hard to make?
5. Can you describe why you were unable to make the changes? Didn’tknow where to start? Didn’t understand why the changes were important?Didn’t believe they would make a difference? Didn’t have support at homeor from healthcare professionals?
6. What types of diabetes nutrition info and education have you received?Individual classes? Group classes? Handouts? Trips to grocery store?Learning how to read labels? Cooking demos? Nothing?
7. Was this education helpful in changing your eating habits? Why or whynot?
8. What would make nutrition education more suited to your needs?
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