Four themes emerged from the analysis to represent nutritional problems and negative impacts on the quality of life among Chinese patients with type 2 diabetes: nutrition literacy, sociocultural aspects of nutrition, behaviours and nutrition management, and negative impacts of poor nutrition management. Table 3 shows a list of themes and subthemes with the accompanying % proportions.
Table 3
List of the proportions of each theme and sub-theme
Themes & Sub-Themes
|
Number (percent, %)
|
Theme: Nutrition literacy
|
12(57.1)
|
Insufficient information provision
|
10(47.6)
|
Non-practical or over-theorized knowledge
|
7(33.3)
|
Inaccurate information
|
11(52.4)
|
Theme: Socio-cultural aspects of nutrition
|
17(81.0)
|
Family responsibility
|
6(28.6)
|
Family knowledge and awareness
|
3(14.3)
|
Social role stress
|
8(38.1)
|
Culture and religion
|
7(33.3)
|
Theme: Behaviors and nutrition management
|
18(85.7)
|
Low efficacy in management
|
7(33.3)
|
Poor treatment adherence
|
9(42.9)
|
Insufficient information seeking
|
15(71.4)
|
Theme: Negative impacts of poor nutrition management
|
16(76.2)
|
Psychological stress
|
11(52.4)
|
Poor glucose control
|
3(14.3)
|
Diabetic complications
|
4(19.0)
|
Reduced quality of life
|
14(66.7)
|
Theme 1: Nutrition literacy
Subtheme 1: Insufficient information provision
Almost 48% of the total respondents complained of insufficient knowledge and nutritional education. This was partially related to the Chinese health care system, in which doctors and nurses were fully occupied with therapies and operations and were too busy to provide nutrition knowledge. In the Chinese culture of hospital admission, the referral system is not well developed. Patients have full access to each level of hospital. Every patient can visit a tertiary hospital at any time. Therefore, a great number of patients access tertiary hospitals, and every doctor in their outpatient clinics may treat over one hundred patients per day.
"The health care workers only gave me an insulin pump and said nothing more. There were no doctors or nurses telling me about how to control my diet and did not discuss with me about what to eat and what not to eat in detail." (P12)
"The diabetic clinic was so crowded with patients. After waiting for at least 2 hours, I finally met the doctor. However, the doctor ‘kicked me out' of his office within two minutes because many other patients were still waiting for him or her. I did not have a chance to ask about diabetic food in detail." (P05)
Subtheme 2: Nonpractical or overtheorized knowledge
Although educated by the health care workers, 23.8% of the total participants complained that the nutritional knowledge they were given was too broad and too superficial. They still expressed difficulties with the application of this information to daily meals because they did not know how to accurately control their diet and precisely calculate calories.
Moreover, 33.3% of the participants mentioned overtheorized knowledge. According to the traditional algorithm and theory provided by health-care workers, the amount and frequency of food intake were complex and difficult to calculate.
"I have no idea of what high-quality protein is. Tofu? Seafood? There are thousands of kinds of food. I am truly confused of what we could eat and what we could not." (P21)
"As the doctors and nurses said, according to guidelines and theories on diabetes, my meals were required to be carefully controlled by calculating the precise amount of overall food intake. That means you need to understand the calories of each kind of food, and you need to weigh the precise amount of the food, and then you need to make some calculations. These calculations are beyond my understanding as an older person. So I just quit."(P04)
Subtheme 3: Inaccurate information
Moreover, inaccurate knowledge was mentioned by 52.4% of the participants. There were some misunderstandings and incorrect perceptions of diabetic nutrition. For example, some diabetic patients thought they were not supposed to eat any kind of fruit.
"Diabetic patients cannot eat any fruit because all fruits contain sugar. One of my friends, who had diabetes for over 10 years, told me to cut back on any sweet, especially fruit. We believe that blood sugar would rise immediately after eating fruits and vegetables." (P01)
"I had an old friend who brought me two bottles of bee honey. He told me that honey was not high in sugar and was good for health with no side effects to diabetes. Therefore, I ate rice gruel and steamed bread with a spoonful of honey every day. However, as a result, my blood sugar went up high immediately." (P03)
Theme 2: Sociocultural aspects of nutrition
Subtheme 1: Family responsibility
Most patients with type 2 diabetes were living with family members, and it was generally recognized that family support was a key to successful diabetic self-care. Food acts as an important bridge connecting family members; therefore, patients' nutritional habits were greatly impacted by their family members. Approximately 28.6% of the respondents mentioned that they were willing to sacrifice themselves for their family. In other words, they gave priority to the nutritional needs of their children or other family members over their own. If there was a conflict between the therapeutic diet and the family's dietary preferences, the patients would go against the diabetic diet and consider their family's eating habits.
"I am a diabetic patient, but at the same time, I am also a mother. If I reduce the amount of the oil and sugar too much when cooking, my son won't eat the food because it is not tasty. In addition, my son needs enough energy for growing up. I could not require him to eat a diabetic diet along with me. That is not fair for him. Therefore, I cook and eat normal foods with my son; I rely on medicine to help me control the glucose." (P13)
Subtheme 2: Family knowledge and awareness
A total of 14.3% of the patients suggested that their family members also needed to master essential knowledge about diabetic nutrition. If family members lack relevant knowledge, they may fail to support patient diet control.
"My son is very kind to me. He always bought me a full box of fruit. There was a time that he sent me many mangoes by Federal Express. The mangoes were so large in size, I could only eat a half of one. However, it was wasteful to throw away the rest of the mango, so I ate the whole mango. In addition, I still have a full box of mangoes waiting for me to eat. I told my son not to buy so many fruits because I have diabetes; but he still does because he loves me." (P11)
Subtheme 3: Social role stress
Over 38% of the interviewees discussed that stress from multiple social roles may affect diet management and blood sugar control. Patients often ignored their own dietary needs because of their responsibilities to family and work. For example, female diabetic patients were busy with family care while working at the same time, so they had no time to take care of their own diet control. Male diabetic patients complained about more pressure from work and social interactions, so they chose to give up their diabetic diet.
"I knew I had diabetes, but I was too busy at work to prepare myself a diabetic meal. Moreover, my child was at a key time in the preparation for the college entrance examination, and I spent my rest of time taking care of him. I just ate whatever I could have." (P08)
"Before, when I was working as a manager, I did have diabetes. However, at that time, I had lots of social interactions, with my colleagues, with my clients and with my working partners. We gathered together to eat and drink alcohol. I knew that it was harmful to my diabetes control. However, I had no other choice."(P03)
Subtheme 4: Culture and religion
Given that Chinese culture is generally associated with collectivism and hospitality, it was considered impolite to refuse food and beverages during social gatherings with family and friends. Some patients even worried about stigmatization as a result of their condition. This perception affected these patients' adherence to the nutritional recommendations.
In addition, religion was an important factor that influenced nutritional habits. Two participants reported that they practised the Islamic religion. They mentioned the conflicts between their religious culture and dietary habits.
"When I went to a dinner party, all my friends were eating and drinking. I did not want to look antisocial to them. In addition, I did not want them to know I had diabetes. I just ate as the same way as they did." (P5)
"I only ate meals before sunrise and after sunset. I did not eat anything, and even medicine at daytime. After Ramadan (Islamic holy month of fasting), we had a Corban Festival. We slaughtered sheep and cattle and ate our favourite traditional foods to celebrate. Although this would cause unstable blood sugar, we still followed traditional customs in our religion." (P17)
Theme 3: Behaviours and nutrition management
Subtheme 1: Low efficacy in management
One-third of the participants complained about their low efficacy of self-management. For example, the patient's diet control easily went to two extremes, either excessive restriction of food or no restraints.
"I knew a diabetic diet was important and essential for glucose control. However, I was born to love meat and desserts. I would not feel happy if I quit them. I could not completely change my diet habits. So I just ate whatever I wanted. If my blood glucose level fluctuated, I just took one more pill." (P4)
"I heard that eating fish and meat easily raises blood sugar, so I do not eat any fresh meat, even eggs; I only eat vegetables. One time when I was resident in the hospital, my doctors said that my protein index was low. I assumed that a low protein index was related to my strict restriction on meat." (P08)
Subtheme 2: Poor treatment adherence
Three interviewees complained that they felt it difficult to strictly adhere to meal plans due to changes in lifestyles or work schedules. Moreover, they did not know how to adjust their diet response to these changes.
Although some diabetic patients realized the importance and benefits of a balanced diet for glucose control, one-third of the participants still found it difficult to comply with a diabetic diet. Some type 2 diabetic patients refuse to reduce their fruit intake simply because they do not like it. In addition, some patients do not like to eat vegetables because they feel that the taste is unpleasant and does not conform to their personal taste preferences.
"I work in a police station. Sometimes I fail to eat my meals on time when there is an accident or an emergency. I have to deal with the case before I can eat my meal. The doctors' dietary advice was only suitable for patients living on a regular schedule. It did not suit people like me whose work schedule was not fixed." (P18)
"My husband and I both have diabetes. I adhere to dietary requirements very well, but my husband is obstinate and self-willed. Sometimes he sneaks out to eat ice cream and high-sugar foods. Then, he gets blood glucose fluctuations." (P7)
Subtheme 3: Insufficient information seeking
Diabetics reported high demands for nutrition information since information-seeking behaviours were evident in most participants (71.4%). Respondents discussed a variety of ways they looked for information related to nutrition, including surfing on the internet, talking with other patients, attending health professional lectures, and reading newspapers and cookbooks. However, none of the respondents reported finding a source that was convenient for seeking information about a diabetic diet. One reason was that some nutrition information was too professional to understand for patients. Moreover, complaints about the quality of online information were also raised. For example, information on the internet is explosive and contradictory, and it is difficult for patients to distinguish between true and false information. Third, they also worried about the leakage of personal information while logging into online education platforms.
"I attended many lecturers on nutrition organized by hospitals and communities, and I took notes carefully every time. However, my memory was poor. I could not remember exactly how to eat. It was troublesome and inconvenient to glance over all my notes. So I just gave up the notes and simply ate the same as before." (P15)
"Online information and education were convenient, but we still doubted the reliability of this information. I heard that personal information was leaked and money was cheated on the internet. So I did not think the network was very safe." (P20)
Theme 4: Negative health-related outcomes
Subtheme 1: Psychological stress
Over 52% of interviewees reported high alertness due to worries and fear of hypoglycaemia. They chose to eat extra meals if they felt slightly uncomfortable in case of hypoglycaemia. Sometimes they even completely ignored diet control to avoid hypoglycaemia.
"I have been too anxious to sit down since my diagnosis of diabetes. I am angry with myself because my parents and sisters do not have diabetes. I do not know how I can get this disease. I feel overwhelmed, and I even thought that it might be a punishment from the Gods." (P10)
Diabetes is a chronic and lifelong disease. Long-term self-management and worries about complications cause huge psychological pressure and place a mental burden on patients. Five participants expressed their lack of confidence and low self-efficacy regarding lifelong blood glucose control. This may be because they do not have correct knowledge about the required diet, so they have no idea of how to correctly control their blood glucose. Another reason may be that fluctuations in blood sugar do not provide them with positive feedback or a sense of benefits.
"Through diet control, I could never control the changing patterns in blood sugar, which was always high or always low. I am too tired and bored to monitor the diet and glucose. I want to give up." (P21)
"When my blood sugar is unstable, I often feel upset and particularly sad. Why was it me who got this disease, and why can I not eat sweet food and eat whatever I want, just like my other friends have done." (P06)
Subtheme 2: Poor glucose control
One of the evident impacts of diet is the fluctuation in the blood sugar level. Failing to follow strict diet management may result in poor glucose control.
"When my blood sugar went up slightly higher, my daughter asked me to control my diet first, saying that ‘if I did not control my diet well, I would soon get diabetes'. I did not believe it at all, and I still ate dates all day long. As a result, after half a year, my fasting blood sugar reached more than 10." (P14)
Subtheme 3: Diabetic complications
The fluctuating blood sugar caused by uncontrolled diet management may also lead to a variety of diabetes-related complications, such as diabetic nephropathy, diabetic retinopathy, cardiovascular and cerebrovascular diseases. Complications increase the physical and economic burdens on patients and are closely associated with a decrease in health quality of life.
"Actually, I knew my blood sugar was high five years ago, but I did not take it seriously. I still ate whatever I wanted. Anyway, it did not hurt or itch, until I developed some problems in my eyes. I regretted that I did not listen to the doctor's advice on diet control from the beginning." (P06)
Subtheme 4: Reduced quality of life
The experience of daily insulin injection and the fear of hypoglycaemia and diabetic complications had a negative impact on daily activities and social interactions, eventually resulting in a decrease in quality of life. Two-thirds of the respondents suffered a reduced quality of life when they were too cautious about low blood glucose. They had to prepare candy and nuts in case of hypoglycaemia everywhere they went, including at home, at their workplace and when travelling.
"I cannot accept that I have to take an insulin injection before eating every day; and I cannot bear that I have to take my insulin pen when going out for a long distance. All of these are inconvenient." (P12)
"There is a joke saying that ‘it is all right to go out without taking money, but it is bad to go out without candy'. I know the bad feeling of hypoglycaemia, so now I have sugar all over my house. If I do not have a few sweets handy, I'm in a panic." (P09)
Moreover, some participants even mentioned behaviours of avoidance and restrictions on physical exercises and social interactions. The interviewees were overly cautious about hypoglycaemia to the point that they avoided going out and reduced their participation in social gatherings. One respondent even gave up driving due to the potential risks of hypoglycaemia.
"Generally, I seldom go out and travel around because it is very inconvenient that I have to prepare medicine and insulin. In addition, I keep worrying about emergency situations such as hypoglycaemia." (P07)
"I quit driving a car on my own. When I have a hypoglycaemia attack, I shiver and cannot move my body. I am afraid this will place me in a dangerous situation if I am driving. (P08)