Social context of diabetes mellitus
Physicians view diabetes as a metabolic disturbance affecting isolated individuals, but the condition looks very different when viewed within its social context. The prevalence of diabetes closely reflects the lifestyle of a population - its affluence, dietary and cultural habits, and even its social divisions. Conversely, the wealth, social organization and culture of a society will largely determine its ability to mount an effective response to the challenge of diabetes. Diabetes is a major economic burden for affluent nations, representing 5-10% of total health expenditure. This is largely due to the cost of long term complications such as kidney disease or leg amputations, whereas drug costs make up no more than 10-20% of the total. In poorer countries, diabetes has a worse prognosis and medication costs, often borne by the patient, may then constitute the major expense. Diabetes confers the psychological and social cost of a chronic disease, and may still carry a social stigma in addition to its implications for employment, driving, insurance and many other activities. The burden of diabetes varies widely but it remains an obstacle to full self-realization in all parts of the world.
Physicians tend to view diabetes as it affects individuals and their families, whereas epidemiologists view it from the perspective of whole populations. There is however a whole dimension of diabetes which is not captured by either of these perspectives, and this is diabetes as it affects members of a society.
The root meaning of the word "individual" is "that which cannot be divided". We operate as members of groups, not in isolation. Diabetes has widely differing impacts within different social settings, and these different settings affect the ability of individuals with diabetes to manage their condition and to function effectively within their society. Social context is an important yet still largely unexplored area within our understanding of diabetes.
The Needs Hierarchy
Figure 1. The pyramid of needsThis simple and intuitive formulation of human needs was developed by Abraham Maslow, and is typically represented as a pyramid (figure). Simple physiological needs are represented at the base, followed by the need for security, love and belonging, respect and esteem and self-actualization - "being all that you are capable of being".
At the most basic level, the physiological requirements of diabetes are satisfied by access to the advice, medication and diagnostic facilities required to restore homeostasis at the symptomatic and functional level. Sadly, access to basic health care for diabetes is limited within the "bottom billion" of the world's population, and within sub-groups of even the most affluent populations.
In the longer term, represented by the second tier of the pyramid, people seek to secure their future well-being by effective health management and acceptable control of blood glucose and other risk factors. They also seek reassurance that diabetes will not affect opportunities for work, marriage, strong personal relationships and a long healthy life.
All these may be considered fundamental human rights for those with diabetes as for those without, but these are often not equally on offer, and almost all societies offer some degree of obstacle to those with diabetes.
At higher levels of human need, as represented by Maslow's pyramid, the obstacles to those with diabetes are more subtle, and may operate at the level of folk belief, unconscious prejudice, fear of intimacy, lower expectation or other types of almost invisible stigmatization. These pressures may be reflected by a defensive response on the part of the person with diabetes.
Personality, social support and diabetes
Clinicians who advise large numbers of people with diabetes are regularly astonished by the variety of ways in which individuals adjust, or fail to adjust, to a diagnosis of diabetes. Experienced clinicians often feel they can predict which people will do well and which will encounter difficulties, but no psychological instrument has yet been capable of doing the same.
As in other areas of life character is fortune, and it seems clear that the personality and coping ability of the person affected will play a major role in their ability to manage their diabetes. There are however other key elements to success including social support (especially for children), professional support, and training in the requirements of life with diabetes
Diabetes, work and leisure
Although individuals with diabetes have shown that almost any heights can be scaled in any aspect of human activity including sport at the highest level, a number of societal restrictions have been imposed in different areas of life. These restrictions mostly relate to insulin treatment in relation to activities which might have disastrous consequences for the person concerned or other people should hypoglycaemia develop, for example driving a heavy goods vehicle. Certain occupations are also restricted, for example front-line military service, but with considerable variation from one society to the next.
The underlying rationale for such restrictions is self-evident, but they may nonetheless be applied in a mindless or unjust fashion. Advocacy by patient representative groups such as the ADA or Diabetes-UK has played a key role in ensuring that the rules are fair and fairly applied, but individual injustices still occur.
Other restrictions may appear less well justified, for instance discriminatory insurance surcharges. As ever when buying insurance, it pays to trust no-one and to read the fine print.
The problem of hypoglycaemia
Although only a small minority of people with diabetes experience recurrent severe hypoglycaemia, the fear of this condition rates high among the concerns of many others on insulin treatment, as of their friends and relatives. Concerns mainly relate to loss of self-directed autonomy, whether resulting in social embarrassment, accidents, bizarre behaviour or loss of consciousness.
Non-diabetics who have witnessed such behaviour or learned of it by hearsay tend, unfairly but understandably, to extrapolate this to diabetes in general. Much unreasonable prejudice existed in the past but is slowly being overcome as diabetes becomes more common and those affected feel able to talk more freely about their condition.
An area of particular concern at the interface between society and the law relates to the claim that an individual with diabetes accused of criminal activities carried these out under the influence of hypoglycaemia, and was therefore not fully responsible for his/her actions. Such claims are often made at the prompting of lawyers, but only rarely sustained.
Diabetes in different societies
The management of diabetes affects almost every area of social life, and may thus be perceived very differently from the perspective of different cultures. This easily gives rise to misunderstanding in multicultural societies. Obvious cultural differences relate to religion, sources of authority, family dynamics, the role of women, health beliefs, body image and attitudes to food and exercise - the list could be easily be prolonged.
Such differences provide considerable scope for misunderstanding, and it does not help that standard medical training in western countries assumes western culture and attitudes as the norm. Almost all potential problems can be overcome by sensitivity, good-will, careful exploration of concerns and mutual respect, but advice offered without understanding will rarely prove effective.
Social Status and diabetes
Diabetes - here meaning type 2 diabetes - first appeared as a disease of the rich in ancient India and then in the West. Increasing affluence has seen diabetes migrate down the social scale in affluent societies, in which obesity and "diabesity" are now more common in deprived sections of the community.
In less affluent countries diabetes has made its greatest impact upon town-dwellers and wealthier segments of the population, a process sometimes referred to as coca-colonization, so that it might be said that diabetes is a now a disease of the poor in rich countries and of the rich in poor countries.
Diabetes is more common in some socially disadvantaged communities, particularly when low social status is associated with discrimination based upon ethnicity, culture or lifestyle. This is frequently linked to poor access to health care and advice, resulting in increased morbidity and mortality.
Demographics and diabetes
Figure 2. Median age across the globe.Many factors influence the impact of diabetes upon a population including wealth, lifestyle, ethnicity, and increasing age. Regions with ageing populations are seeing a corresponding increase in the prevalence of diabetes and other age-related conditons.
Economic costs of diabetes
These can be divided into direct and indirect costs. Direct costs are those directly attributable to management of the condition, including medical costs, medication costs and the cost of hospitalization. Indirect costs are more difficult to estimate and include loss of productive employment due to illness, and the impact of diabetes upon carers and family.
In many social systems the direct costs are covered by state or private health insurance, but within such societies - including the USA - the burden can be heavy for those not covered by such schemes. In other countries the cost of diabetes is largely met by the patient, and medications such as insulin may be unaffordable for poorer members of the community.
Most estimates of the costs of diabetes are based upon direct costs, and are derived from modelling. Modelling exercises make certain key assumptions as to, for example, the prevalence of diabetes and the contribution of diabetes to the health costs of affected individuals. Not surprisingly, estimates of the costs of diabetes vary widely both within given societies, such as the USA, and from one social system to another. Furthermore, there is an understandable tendency for groups involved in lobbying, such as patient organizations, to cite the higher estimates in the attempt to raise public awareness of the condition they represent.
Notwithstanding these cautions, it is undeniable that diabetes contributes in the region of 5-10% of total health costs in many developed health care systems.
People live in communities or social networks within larger societies, and their ability to manage diabetes effectively will inevitably be affected by the attitudes and expectations of those around them.
These attitudes can determine the level of social support, and the ability of the person concerned to work, marry, and function effectively. The structure and organization of the wider society within which they live will largely determine their possibilities of access to effective health care.
Health care workers too often view people with diabetes in isolation from their background, expectations and aspirations. Sensitivity to such issues cannot really be taught but must nonetheless be learned by all those who wish to manage diabetes effectively.