In Shanghai, the vulnerability assessment reveals insights into how diabetes impacts families and how family behaviour and perceptions impact an individual’s ability to manage their diabetes. The research also reveals knowledge about social transition and its relationship to urban diabetes.
Various insights into vulnerability to type 2 diabetes and diabetes-related complications have emerged from the research and some of the most important are highlighted below.
Family relationships play an important role in the management of diabetes for participants in Shanghai. People with diabetes rely on their family for support and care in matters concerning their treatment. Among participants, familial support is shown to be a highly positive element in diabetes management and control. On the other hand, diabetes can become a justified exemption from household duties because of ‘sick’ status.
When diabetes becomes a burden, it is a burden inflicted upon the whole family or household. This in turn creates feelings of guilt or shame for the individual with diabetes who has brought ‘trouble’ upon the family. Participants describe much anxiety over inconveniencing their family with their health needs and care, especially in the presence of complications. As diabetes is accepted as being hereditary, many participants worry excessively about the genetic inheritance they are leaving to their children.
For many participants in Shanghai, the memory of an age of material poverty is still fresh in their minds. They recollect times of hunger and scarce food resources, but also recollect how everything has changed since the reform and China ‘opening up’. People’s material lives have improved greatly during this period and they have taken full advantage of the abundance of food resources. In this sense, diabetes can be understood as a disease of wealth, or excessively lavish tastes for sugar and fatty foods.
Many participants believe they developed diabetes due to the extreme dietary changes that they have experienced throughout their lives. It was frequently expressed that the knowledge of diabetes and how to prevent it would have altered their past behaviour drastically. It is a sad irony for many that today, with such vast availability of food, they have to adhere to such strict and bland diets because of their disease.
In Shanghai, many participants experience negative beliefs around diabetes as well as significant societal disapproval. This impacts diagnosis, care provision, and physical and mental wellbeing of those affected. At times the diagnosis severely prevents people with diabetes from accessing help and support. In part, this seems to be due to the stigma felt (linked to the perception that diabetes is a condition of the elderly and ‘weak’), especially when a diagnosis of diabetes is made at a young age. Furthermore, a sense of stigma becomes enacted where individuals develop strategies to avoid drawing attention to themselves and their condition.
Peer support is very difficult to access for some participants in Shanghai, simply because they do not know who else has the condition, and they do not want to draw attention to themselves. The psychological implications of the experience of shame, which prevents individuals from engaging in certain social activities due to the anticipation of being stigmatised, have profound consequences for health and overall sense of wellbeing.
Stigma is also closely linked to the understanding of diabetes as a genetic condition that is passed on to one’s children. For example, in one case, the daughter of a participant did not tell her fiancé’s family about her mother’s diabetes for fear her in-laws would discriminate against them (due to the potential of passing on the condition) and call off the prospective marriage.
The participants in Shanghai had the perception that all chronic diseases, including diabetes, are inherited. In addition, they believe that diabetes can be caused or aggravated by bad dietary habits and there was a sense that it is easier to manage diabetes by regulating diet and diabetes medication once it has been diagnosed rather than to be pre-emptive. There also seemed to be a greater sense of fear of the risks of diabetes complications than of diabetes itself, and this fear frequently acts as an incentive to modify unhealthy habits or behaviours.
There seems to be an inversely proportional relationship between scientific and non-scientific explanations of diabetes and medicines with regard to cost-effectiveness. Participants perceived conventional medicine as being effective, but concluded that it is difficult to understand how it works and that it is often financially prohibitive. In addition, biomedical pharmaceuticals are looked upon with a degree of scepticism because of potential side effects while, alternative or complementary medicine is easier to understand and more accessible in spite of any perceived inferiority with regard to contemporary medicine.
Three cases that exemplify some of the key insights into vulnerability to type 2 diabetes and its complications are presented here.
Caoyang is a 48-year-old man who lives together with his family in Shanghai. He has full-time employment and is generally very busy at work. Caoyang was diagnosed with type 2 diabetes at a general physical check-up last year. During the examination, it was also discovered that his cholesterol and blood pressure were too high. At first, he was not too troubled by this.
He enjoys eating sweet foods. He was accustomed to adding sugar to nearly every dish when cooking. He also ate many salty foods, which he believes contributed to his developing diabetes. Upon diagnosis, his doctor advised a more controlled diet and recommended that he engage in more physical activity.
For Caoyang, the lifestyle changes that his diabetes demanded were tough to accommodate. To the disappointment of his family, he did not adhere to the dietary restrictions on sweet, fatty and salty foods, often justifying that “it makes no difference to eat occasionally”. This changed for Caoyang when he was hospitalised. At that time, his blood glucose was very high and he was put on medication.
For six months, under the supervision of his doctor and his own family, his blood sugar levels have significantly improved. This change has allowed Caoyang to gradually stop taking medicine. Today, he relies solely on dietary control and exercise to manage his diabetes.
Due to his work, Caoyang feels that he does not have much spare time to test his blood glucose and, therefore, he usually goes to the hospital to have his blood glucose tested once every six months. Generally speaking, he is not very trusting of doctors and suspects that they often exaggerate the seriousness of a condition to get people to comply. He believes he is still a young man and, therefore, healthy. Illness is not a significant threat to him. He believes that “diabetes isn’t a serious illness and I don’t care... diabetes isn’t a serious disease to me and I’m certainly not concerned”.
His wife has made great adjustments in the preparation of meals to accommodate her husband’s condition. She no longer adds sugar to dishes, and only very little oil and salt. At first, Caoyang had difficulty adjusting to this but, fortunately, with the efforts of his family, he has gradually become accustomed to it. His family also supports him by helping him measure his blood pressure at home every few weeks.
Caoyang enjoys exercise. Every day after supper, he goes to the sports centre behind his house for a walk. This helps him to maintain his blood glucose at normal levels.
Caoyang and diabetes
Caoyang does not care much about his diabetes in his everyday life, and he finds it difficult to adhere to the related dietary restrictions. In his daily life, he focuses on his work so he can provide for his family. Also, he perceives himself as young and healthy, and is currently not concerned about his diabetes or its potential complications. At home, his family actively engage in his diabetes management, but at work he downplays this due to his work schedule.
Caoyang’s case is interesting because it is representative of a middle-aged man with type 2 diabetes who has steady employment, a family, and lives in Shanghai. However, with the stressors of work and the demands of everyday life, these men may not focus enough on their own health and do not prioritise monitoring their blood glucose.
• 77 years old
• Widowed and lives alone
• Type 2 diabetes
Lingling is a 77-year-old retired woman living on her own in Shanghai who was diagnosed with type 2 diabetes at the age of 52. When Lingling’s husband passed away, as a way to combat her grief, she went to work in Shenzhen for a year. When she returned home to Shanghai, she had lost a lot of weight, and a neighbour expressed his concern that she might have diabetes. At the time, she did not know what diabetes was but, taking advantage of her insurance, she went to the doctor for a check-up.
She is not optimistic or pessimistic about her condition, but merely wants to “let the nature take its course”. She does not put much effort into her diet or into monitoring her blood glucose levels. She believes this is the best way to accept her condition.
For Lingling, diabetes is a hereditary disease. Both her children have ‘inherited’ it from her. She tries to help them by sharing information on a healthy diet so that they can keep their blood sugar controlled. She also advises them to get sufficient sleep and says that worrying is of no use. “Don’t be worried, and your blood sugar will decline”. To her, diabetes is not such a horrible illness, but it is important to know the disease and learn how to manage it in order to live well. She does not live her life as a diabetes ‘patient’, she feels healthy and enjoys her life.
Since her diagnosis, she has been very grateful for all the help she has received from her family and the community. They help her with her household chores and often give her some vegetables and noodles. Though she is very touched by these gestures, she feels somewhat guilty about receiving help, particularly from her children, who face the same struggles with diabetes as she does.
Lingling and diabetes
Lingling does not take too much enjoyment in exercise since her legs cause her great pain although, in her youth, she was very active. She says she likes sports, but she does not feel she can move as easily as she used to. Her lack of mobility often keeps her from participating in various community events and local traditions. Financial limitations also represent a barrier to her good health. Due to this, she feels very fortunate to have insurance to help her pay for her health-related expenses.
Lingling’s case is interesting because of the participant’s attitude towards diabetes. For her, diabetes has influenced her ‘self-perception’. She is not willing to be made a victim of the disease and does not allow it to control her life. It is diabetes that must live with her, not she with it.
Zhenru is a retired 64-year-old woman living in Shanghai with her son, his wife and their young daughter. Five years ago, Zhenru’s husband – who also, like Zhenru, had type 2 diabetes – passed away. It is apparent that she suffers from loneliness as a result.
While he was alive, her husband did a great deal to help Zhenru manage her diabetes. For example, he did the cooking and made sure she followed a healthy diet with plenty of vegetables. “I was very spoiled and dependent on him and never had to exert myself”.
At home, Zhenru shares the cooking responsibilities with her son and his wife. A typical meal for them consists of rice and vegetables from the local market. However, Zhenru does, on occasion, buy ready-made food like dumplings, because of the convenience.
Both Zhenru’s parents had diabetes and she was well-informed about the disease from an early age. For her, diabetes is primarily a genetic condition, but she says it is likely that it was her love of sweet foods that also contributed to her developing diabetes. She no longer eats sweet foods and takes less enjoyment in her meals. Due to her belief that diabetes is hereditary, her primary concern is that her son may develop the condition.
According to Zhenru, she takes a lot of pills to manage her health, including metformin and sleeping tablets. Despite all the medication, she is surprised at her ill health. However, she does recognise how much treatment has helped her since she was first diagnosed at the age of 29, and is very grateful for all the medical services she has received. She has a good relationship with her doctor, whom she sees often and holds in high esteem.
Zhenru and diabetes
Zhenru’s husband used to take excellent care of her and played a crucial role in her diabetes management. Since he passed away, she has tried to take more control over her health matters. She is a member of a diabetes club that meets regularly to talk about the condition. The group offers information and support to all its members. This resource is invaluable to her, as it has given her a lot of knowledge about how to live with her illness, and she has found this hugely empowering. The birth of her granddaughter has also rejuvenated her motivation to take care of her personal health. However, her melancholia impacts on her ability to do so.
She is very thankful to have her community, consisting of her family, friends, neighbours and doctors, who have all provided her with a lot of care and support since her husband passed away. However, the fact that he can no longer provide support, together with her melancholia, puts her in a vulnerable position.
This case is interesting because it exemplifies how important emotional wellbeing is for diabetes management and care, as well as support from the community, including family members, friends, and medical workers.
Rule of Halves shows that the prevalence of type 2 diabetes among people over the age of 35 is 17.6% in Shanghai. Of those one in three people with type 2 diabetes is unaware of their condition, hence, are not diagnosed. Of the people who are diagnosed with type 2 diabetes, almost all receive care (93%). However, three in five people receiving care do not manage to achieve treatment targets.
The last pillar is estimated based on the general Rule of Halves due to lack of data.
The research was performed by Shanghai Diabetes Institute led by Professor Weiping Jia.
Read more about the research and results in Shanghai in Urban Diabetes – Understanding the challenges and opportunities.
The Rule of Halves research is based on previously published quantitative data for Shanghai.
The insights presented here are based on 103 individual interviews with people with type 2 diabetes performed by trained healthcare professionals in diabetes clinics.