Background
Methods
Theoretical framework
Study setting and community-based participatory research partnership
Steps in intervention development
Step 1: diabetes survey
Step 2: focus groups
Study design
Study participants and recruitment
Data collection
Data analysis
Results and discussion
Somali (n = 24) | Latino (n-13) | Somali and Latino (n = 37) | |
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Male, n (%) | 15 (62.5) | 6 (46) | 21 (56.8) |
Age, years mean (SD) | 59.1 (4.5) | 49.8 (12.5) | 55.8 (13.3) |
Years lived in US, mean (SD) | 11.6 (4) | 23.2 (3.5) | 15.6 (8.2) |
Years with diabetes, mean (SD) | 8.4 (4.0) | 10.3 (14.0) | 9.1 (2.0) |
Language mostly spoken at home, (%) | Somali (97) | Spanish (92) | |
Somali/English (3) | English/Spanish (8) | ||
High School/College Education level (%) | 17 (71) | 7 (54) | 24 (65) |
On Insulin, n (%) | 9 (38) | 3 (23) | 12 (32) |
Regular glucose self-monitoring, n (%) | 23 (96) | 8 (62) | 31 (84) |
Themes and subthemes
Diabetes diagnosis, understanding, and reactions
Sub-theme | Summary of reactions | Representative quotes |
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Relief or denial | Often related to presence/absence of symptoms at diagnosis | SM: “I was diagnosed with diabetes about three years ago. And when I was diagnosed I could not believe it. …So my “believe” that I did not have diabetes even got stronger and I started to continue to eat whatever I wanted to and lots of sweets.” SM: “So I was worried before the diagnosis and concerned about my condition of urgent urination so I kind of found identity for my problem. So when I was told you have this disease I kind of felt better because at least I had condition rather than not knowing what was wrong with me.” SM: “My reaction was that I believed that I was going to die since they said you are not going to leave the hospital and how serious my sugar was. I was very afraid.” SW: “I remember when my doctor told me that do you have diabetes, I disagreed with him for a long time because I told him that diabetes is a hereditary disease and none of my family members have ever had diabetes.” |
Shock, fear, hopelessness | Often related to knowledge of diabetes, especially from diabetic family members, beliefs about hereditability, and lack of prior diabetes knowledge | LW: “I wasn’t expecting that. Because I had met people with diabetes and I know that life is difficult for the people that have diabetes. Because, first; you have to cut [off] all your customs…, so your life is going to change totally.” LM: “I grew up knowing about diabetes in the family, some of my relatives had lost limbs. When diagnosed I thought “no hope” [I gave up].” SM: “I had that many symptoms that include frequent to urination and sometimes not being able to hold on and thirst. So I went to the Internet and I looked for information and diabetes I was in California and I recognized that I had all the symptoms of diabetes so when I was going to the doctor I actually believed I had diabetes…I went in there for more of a confirmation even though part of me wanted to deny it and hoping that I would be wrong. …I had phobia about diabetes and I really hated it. I believe that if you had diabetes or you were diagnosed with diabetes you would be it would be death sentence.” SW: “I was very shocked when I heard that I [was] diagnosed with diabetic and it was right after when my son passed away and with that type of diabetes. …the most shocking moment in my life was when I was told by my Doctor that I will live with diabetes for the rest of my life.” |
Barriers to diabetes management
Sub-theme | Summary | Representative Quotes |
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Competing family needs | Family responsibilities were felt to be a barrier to healthy eating and time for self-care. | SM: “You can’t always be isolated from the foods normal people eat. For example within my family it is inconvenient for them to just cook for me and then also cook for the rest of the family.” SW: “Foods need to be variety plus if we are living by them they are more likely to make healthy food for themselves, but that is not the case. We cook food for people that are not diabetes. I believe that to be the biggest problem.” SW: “It’s different and difficult when women has diabetes than the men because the women always care for their families and children before they take care of them self…when you tell people you are diabetic they will make you feel very bad.” |
Physical pain | Physical pain is distressing and often avoided. | LM: “The aspect of poking yourself…they gave me the insulin and that has been something that…first of all, the pills make me nauseous…but the poking was like a ceremony…it would take an hour…I would poke my belly, everywhere but I could not inject the needle, because I was in panic, I would feel horrible chills.” SM: “…for me was poking my body or my finger that I hated and the biggest obstacle I have overcome to this day. They told me to measure it first thing in the morning and also when I'm about to go to sleep but I procrastinate when I get lazy from it and I really don't like poking my fingers. When I poke myself I start shaking and trembling.” SM: “I have arthritis pain and that limits my ability to exercise.” SM: “…for me I cannot move much, if I try to move I cannot reach even the nearest tree. I have pain in my thighs and I have no energy or endurance at all. From the pain in my joints I cannot move much.” |
Lack of knowledge | Knowledge gaps and misinformation led to low adherence for some. | SM: “So even though the doctor gave me advice on how to take the medication even when I was fasting. I started to not follow the prescription as it was intended and I started to think hey you know may be I don't need to take the medication and I don’t want to make my disease worse.” LM: “But, it depends a lot from you, to depend on you, you also need the information…if you don’t have the right information, that’s the point. They said, people from the town die for lack of information.” LW: “The hard part is when we don’t understand, don’t know the symptoms.” |
Food cravings and cultural customs | Food cravings identified as a barrier to healthy eating. Some cultural customs at times interfered with healthy eating or other self-care. | LW: “One has more cravings than ever, and one has to control the food intake, it is really hard when it is forbidden, it is when one wants to eat even more.” LM: “In my case, the change has been horrible…it has been very difficult, I was used to have good food, and always to be served and to eat all my cravings. It has always been a wonder and joy of my life, and when I had to make changes in food; and it was very curios because a nurse came, and tells me, a little bite of food here and a little food there. I told her, are you joking to me? How do you think I will eat so few food? No, not even for the cat, no I… no, no, no, I like to eat a lot, not like a little here and there, I am not sick. Do I have like pneumonia?” SM: “I know that even if we were given gym membership we will always have an obstacle against that because the thing is we don’t have a tradition that values exercise.” SM: “But regardless of how they live, most Somali peoples eat similar food that lacks the proper nutrients. Most Somalis eat white rice with tomato sauce and a little bit of meat. This is what every mother knows. …It doesn’t matter if you give her EBT with full of money, doesn’t matter if you take them shopping to Walmart yourself. …This is the problem we have. It is not in our tradition to eat these kinds of healthy foods.” |
Difficulties with changing habits | Staying in new routine may be as hard as starting one if motivation cannot be sustained—lack of discipline, lack of time, and competing priorities also may limit activity. | SM: “Then I started to make myself believe that I do not need to exercise and since I am fasting I started to stop it. Once I started to stop it then I got lazy.” LM: “It is almost impossible for an individual to give full attention to his medication and also at the same time keep a job. Being diabetic by itself is a full-time job. You have to constantly check yourself and ask yourself is it going up, is it going down. It’s a constant struggle.” SM: “Laziness and procrastination because I keep thinking to myself you will do later or sometimes I just don’t feel like doing it. Those were the biggest obstacles for me.” SM: “I neglected myself in general to be honest. Because I focus my time on other things. From the time I get up 8 am or 9 am till 12 am, I find thing to be busy with such prayers going to the restaurant and doing other things. I also have exercise machine in my home so I really don’t have excuse but “negligence” as I call it.” SM: “But when it was bad, I would pray Morning Prayer and then I would ride a bike or take a long walk. But when you start think you are ok, then you get complacent.” LW: “I didn’t learn because I haven’t yet taken that continuously the medication, but I knew that… I am not much of, of taking medications every day or do something every day.” |
Structural barriers | Structural barriers (e.g. cost and transportation) may be barriers to healthy activity | LM: “Us guys who work and have diabetes cannot afford to buy only foods that are for diabetic people since we have a whole family to feed and not everybody likes the same food. I don’t think some of us have the budget to buy fresh fruits and vegetables every day, whether you cook it yourself or have someone else cook it for you.” SW: “Plus in Africa was walking everywhere all the time and here a barely do. I am always being driven to everywhere. Here my sugar got high and my pills have been increased.” |
Motivations and strategies for diabetes management
Sub-theme | Summary | Representative quotes |
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Fear of complications | Emotional reactions like fear (including fear of insulin) motivated some, while others found motivation in seeing positive results | LM: “[Fear] is a motivation; it’s a little bit of fear, because what tomorrow bring? Because, many times when we try to center yourself to do this or that, but then always we relapse.” LW: “I am conscious of what diabetes is, because they told me, if you don’t, if you don’t exercise, if you don’t eat healthy, we will have to give you insulin, and I don’t want to get to insulin.” LM: “There is something that also motivate me not to eat much… To abstain to eat, what I love to eat is when I found out that my cousin lost her vision due to diabetes. My mom also had diabetes, she had glaucoma and lost one eye. Another cousin…his leg was amputated. My dad became blind so I said this is more than serious, so I told [doctor], I don’t like this at all, because for me to get my leg amputated or to become blind that thing no…” SM: “My doctor once advised me that diabetes control is mainly what you eat and I believe that fear of death is biggest motivator.” SM: “I realized, the more I exercise the more my sugar goes down. After seeing his results, I became very motivated to exercise. And that is how I was successful.” |
Intrinsic desire | Encouragement from others served as motivation; several participants also talked about intrinsic desire to be healthy | SW: “Every time I go to see my doctor she tells me to keep on doing what I have been doing and keep it up the good job…that have motivated me more, because the nutrition doctor told me if I do exactly what he told me to do I will have better chance to maintain, and after that I made a lot of changes in my life.” SM: “I was motivated by doctor when after the diagnosis he told me that there was hope. That if I stayed active and made healthy choices, I could see improvement in my life and health overall.” SM: “Knowing that your health goals can be accomplished by making healthy choices, and knowing that improving your health leads to extending longevity.” SM: “I have really been following the idea of listening to my doctor. Also when I do exercise I can see it in my sugar numbers. And when the way I have been doing things, my doctors tell to keep up the way I am.” LW: “The personal part, was that I wanted to be the same person than before, with the difference that I can’t eat what I used to eat before.” LM: “You now that, when youare sick and feeling bad you don’t enjoy life, not the sunrise, not the sunset, is like you don’t enjoy life. You are bitter, because you are sick…because you feel bad…because you are cold…you want to faint…and everything affects you, everything smells bad…everything bores you, but when you are conscious, and you feel better… I can enjoy plants, people, sometimes I will go work and it was feeling like…I will go just to go …but when you are under control, you enjoy working, enjoy things you do. Now I enjoy my work, now for me is a joy going to work, and I have two jobs, now I take it, because I have different perspectives and I see it better. And that is the result because I have the diabetes under control.” |
Family | Family was a motivation: participants described need to maintain their own health for the sake of children, and also wanting their children to be healthy. Support given by family members was a motivation. | LW: “I try to be motivated because of my children. They are very little and it gives me a thing that because I am a single mother, then I wonder what is going to happen to my children if this thing happens or another thing happens.” LW: “[My children] motivate me a lot. Now they are starting with did you take the medication, did you take the medication?” LM: “All my children do sports. My older son calls me to go and play soccer together…they are always motivating me to play soccer.” LM: Mainly it was my family, my children because they are little. I thought well if I die, what else can you do, but they are going to be alone…they aren’t going to have their dad. So I started thinking about that because…when I was losing my sight, since I used to help them with their homework…” LW: “Eat it because is good for you, and if you learn that and you eat that your children will learn how to eat healthy, so in the future they will know the risks of eating food that they are not supposed to eat.” |
Faith | Faith made self-care work easier for some. | SM: “So instead of worrying like that I said to myself thank God. And I started to think about ways I can do with this disease I pray to God for him to make it easy for me.” LM: “If I am going to inject here (pointing at arm) well, I am afraid but thank God that everything, asking God look he is healing me.” LM: “So I said, if God gave me the disease, it has to be for a reason. So, the way I took it, about having diabetes, was a positive change.” |
Adapting to circumstances | Healthy activity may fit into lifestyles better by expanding its definition, and adapting physical activities that are easier to incorporate in work and the home. | LW: “Not gym exercise or going to a gym or machines I don’t do that type of exercise, but I try to go to the park with my children, but…I run with them. I walk a lot with my husband and with my children, too.” SM: “For me, praying as a form of exercise. The motions that I do when I’m praying (standing up straight, prostrating and then getting up again, hand movements) is exercise for me. I also walk around in my neighborhood. That’s how differently people see exercise.” SM: “I walk and that is a very beneficial and good exercise. Sometimes I go to the mall and I just walk [around] them without shopping. I’m not sure if that’s exercise but that’s at least my physical activity.” SW: “I stay home a lot more so I am either washing and cleaning or cooking. Running the house keeps me on my feet.” LM: “So what I thought was, I need to change my job, if what I need is to walk, they will pay me to walk…so there was a possibility of another job and I said I will take it, but they will not lower my salary… And they said, yes…So I walk in all of the plant…and that helps me a lot.” |
Moderate changes in diet and eating habits can still be successful | LM: “Yes, reduce them a little more…like…I used to eat a plate…and ok if I used to eat 5 to 6 tortillas at breakfast or at lunch now you can eat 3, because this is not that you will be doing overnight what you should…this is like little by little.” LW: “I used to have problems with the food, but if in a plate you see rice, salad and so the plate looks bigger…so you say…well that’s a lot of food. Before, each plate was from one type of food, now in one plate you can have a little bit of everything, some salad…and since you are used to see a lot of food, you see your plate with variety. That’s the difference, is variety. You can fill it with salad, with vegetables and things like that.” SW: “…the diabetes can be managed but it takes patient and watching your food portion. Plus controlling your sweets intakes like xalwa (Somalian sweets). Not eating too much food with carbohydrates like rice, spaghetti. The doctor’s say don’t cut off those foods but reduce your portion sizes.” | |
Self -discipline | Being disciplined (having a routine, changing habits) was an important strategy, even when participants acknowledged the difficulty this involves. | SM: “So finally I decided to take the medication and accept. I found out that it is not a big problem if you do the right way and that you don’t have to be as worried, follow your medication regimen to stay active eat healthy and you’ll be okay.” SM: “So now I make habit of it. There was a time when you couldn’t have medications around me I hated it so much I never want to be around it. I used to spill if it medications for other conditions on the doctor prescribed me I never want to take them.” SM: “What was helpful was my doctor’s recommendation that I take my medication before I eat always. So I made it a habit to think of medication every time I think of food, so they became associated in my head.” |
Acceptance | Acceptance of the disease was identified as an important strategy in success. | SW: “…if anyone accepts it and does his/her best take their medications on time, control what you eat, and do more exercises I believe its look like controllable even though one is harder than the other.” SW: “I check myself in the morning and each time I eat a meal. I am feeling better now because my diabetes [and I] have become friends.” SM: “Truthfully after the shock, I started to accept it and became friends with it. I treat it depending on where it is. If it’s high, I bring it down, if its down, it pick it up. I deal with it as it is.” |
Following medical advise | Listening to doctors’ advice and learning more about diabetes, as well as awareness of important information such as on food labels were reported as keys to successful management. | SM: “Take your medication that is prescribed by your doctor as it is intended or if you do not follow the sugar disease will kill you.” SM: “But for me one thing I have really obeyed and best take away from my doctor was the recommendation to stay active and I do it by walking.” SM: “The strategy I have used has been to convince myself to listen to the advice of my doctor.” LW: “I learned to read labels, about carbohydrates, making changes from the regular sodas to the diets and take away the sugars.” LM: “I made an appointment with the nutritionist… The doctor gave me a list of things and consequences of the type of diabetes.” LW: “My medicine, my food and be constant going with my doctor. I have tests done at the doctor’s but I don’t monitor myself as I should. I check what I am about to eat, like the labels.” |