Ethnic minority demography, disease patterns and pathways to care

Section two: Ethnic diversity and clinical differences

It is possible to identify a variety of clinical conditions considered to be potentially more or less prevalent in minority ethnic populations. Nearly every book on the health care of minorities will have section about Sickle Cell disease. Research and monitoring is continually increasing the number of diseases for which this can be stated. For example, standard text books refer to the fact that Systematic Lupus Erythematosis is more commonly found in the United States of America among Black women, and in the ‘Far East’. No British ‘ethnic epidemiology’ of this disease can be identified as yet, but there is growing interest (and concern) about the disease among the minority communities here. On the other hand, there are also some conditions which are less common among minority ethnic groups; which are, in fact ‘ethnic-specific’ to the majority white population, or to sub-groups among that population. It is therefore very important to avoid thinking or talking about ‘ethnic diseases’ as if they were less or more important! Nearly all diseases affect all communities to some extent, and from the point of view of the patients and their carers, that is significant enough.

The original Health of the Nation white paper selected five key areas, and seventeen indicators, (including ten mortality indexes) for particular attention. More recently, ‘Our Healthier Nation’ followed a similar approach, while choosing slightly different key areas. Each local Health Improvement Plan has had to identify local priorities.

Exercise 2.1 Activity

Read (or find on the Internet) the summary and priorities outlined in Our Healthier Nation, and (if you can get it,) the Health Improvement Plan (Himp) for your local area.

See whether it mentioned ‘health inequality’ or the specific needs of minority ethnic groups and asylum seekers/refugees as being a priority.

Point for reflection: What five priorities would you select to bring about change in? Why did you choose these health conditions as being most important for the community where you live?

Data for morbidity has not always been available to distinguish between ‘ethnic’ groups, although there is a complex and well-established pattern of differences in respect of admission to hospital for mental illness. In terms of mortality, in each of the main priority areas, there are significant ‘ethnic’ differentials, although for the area of Cancer there has been in general a lower incidence (except for certain selected but relatively rare varieties) among most minority ethnic groups. Irish born persons, however, exhibit much higher rates of lung cancer and suicide. Particular attention should be paid to raised mortality from Coronary Heart Disease (CHD) amongst people ‘born in’ the Indian subcontinent, from Stroke amongst those born in Bangladesh, the Caribbean and (Commonwealth) Africa; and Suicide (amongst Indian-born people, but equally significantly rarer among those born elsewhere on that subcontinent). There is some suggestion, but relatively little satisfactory evidence, of ethnic variations in accidents.

We therefore here review the evidence from the literature which relates to the prevalence of various types of ill-health, including both infectious diseases, and ‘conditions’ which may relate to lifestyle or be inherited, and for which there appears to be evidence of distinct variation between one or more ethnic groups.

Diseases are grouped together to highlight similarities and differences in the effect of ethnicity, rather than in the more conventional clinical groups.

Accidents

An early ‘classic’ study on (immigrant) minority ethnic health differentials was commissioned because of an observation that immigrant workers appeared to be more susceptible to industrial accidents (Lee & Wrench 1980). Detailed investigation revealed that this was attributable to racially biased patterns of employment and workplace job allocation, rather than any inherent (unavoidable) characteristics of the minorities concerned (Wrench 1995). There remains some concern that there are similar differentials today. One example that has been found is that Asian children have a higher risk of involvement in traffic accidents, but this may be explicable in ‘environmental’ patterns of risk since they are more likely to live in inner city areas where the street is their playground and traffic density is higher. There is no clear evidence about the levels of risk to minority groups, despite a long-term study of the issue by RoSPA (Pawar 2000), and the Health Survey for England suggests that accidents are less often reported by people from minority groups.

Cancers

As a general observation, there seems to be a lower incidence of most forms of cancer among minority ethnic groups. It is not clear why this should be the case, although one explanation might be lack of exposure to key environmental hazards (such as chemical pollution) amongst those migrants who were born and brought up abroad. This will of course not be true for UK-born people who now make up more than half of the ‘minority ethnic’ population. Since the majority of cancers appear in older people, this might mean that changes can be expected in the UK-born population as it ages. Muir’s migration-based data (1996) also underline the relatively high rates of cancers overall among people born in Ireland and Scotland. Certain forms of cancer related to diet and lifestyle (notably smoking and the chewing of paan - a mixture of areca nut, lime, betel pepper leaf and sometimes tobacco and spices) are associated with some South Asian population groups, and oral cancers are particularly more common among Bangladeshi people. This may be related to their use of tobacco in various forms (Johnson et al 2000). Less explicable are reported high rates of Liver (SMR 910) and Gall Bladder (SMR 538) cancers among Bangladeshi men (Balarajan and Raleigh 1997), although there are higher rates of Hepatitis infection among a number of minority ethnic groups, which could be linked to later development of cancer. The data also show lower than expected rates of cancers among Bangladeshi women, in particular deaths from Breast (SMR 16) and Cervical (SMR 51) cancers. However, despite high smoking rates, Lung cancer SMRs for both Bengali men (SMR 82) and women (SMR 54) have been found to be significantly lower than the national average.

Other data has found more worrying trends. The mortality rates reported by the Health of Londoners Project indicate that mortality from prostate cancer is higher than average among Londoners born in the Caribbean & West Indies and the Rest of Africa. Similarly, their analysis of admissions data indicates that while there are significantly lower, or not significantly different, admissions for most cancers and ethnic groups there remain significantly higher admissions for cancer of the digestive organs in the Chinese population, and significantly higher admissions of Black Caribbeans for cancer of the prostate and breast. Cancer seems to be the most important cause of death among Chinese people in Britain. Winter et al’s (1999) data, based on name-recognition of Asian groups, also shows that rates of cancer have risen very rapidly among younger people of Asian origin.

Winter et al (1999) analysed the information from the Cancer Registries of Thames, Trent, West Midlands and Yorkshire regions, to provide estimates of cancer incidence. These four regions contain the majority of the UK population of non-white minority ethnic origin, and around 80% of the estimated national population of South Asian background as well as 57% of the total population of England (according to 1991 census estimates). Overall, an estimate of 1.1% of cases in the registries was identified as having a South Asian name rather less than half the ‘expected’ proportion in the population. However, closer examination of the data reveals a more complex picture, when taking age into account. In particular, while rates of cancer were generally significantly lower among males of South Asian origin compared with the remainder of the population, they were significantly raised in respect of certain sites. These included cancer of the hypopharynx, liver, gall bladder, and Hodgkins disease. Among females, rates were generally also lower but significantly raised for cancers of the tongue, mouth, liver and gall bladder, thyroid, hypopharynx and oesophagus, and myeloid leukaemia. While rates of breast cancer were lower overall, they represented a larger proportion of cancers among Asian women, as did lymphomas in both sexes. Their data repeat the raised likelihood of oral, liver and gall bladder cancers in people of South Asian origin.

Consideration of age reveals that rates are higher among ‘British Asians’ than among people in India. In particular, it is shown that among the UK South Asian population aged under 30, the rates of cancer overall, and specifically in the sites identified (notably Lymphoma, Leukaemia, and among those aged under 14, colorectal) were not lower, and could be higher than the comparison population. At specific site level, the data are based on small numbers, but overall, it appears that younger people of South Asian origin are likely to experience a diagnosis of cancer at rates that may exceed those of the white population.

Published research has not looked in much detail at minority ethnic access to, and use of, cancer services, probably because of a belief that these diseases were rarely found. Nevertheless, there are some services where nurses may play a critical role in extending the uptake of provision. There is, for example, quite strong evidence of poor uptake of population cancer screening programmes (i.e. cervical and breast) (e.g., Box 1998, Hoare 1996). Factors limiting uptake of screening include misunderstanding by potential users, language barriers, and lack of awareness of advocate services as well as administrative problems due to inaccurate addresses and record keeping. In many cases this is because of difficulty in recording or understanding Asian naming systems. At this point, it would be useful to remind yourself about naming systems. Here is an extract from ‘The Principles of Midwifery Care in a Transcultural Context’ by Eileen Russell-Roberts.

Extract from ‘The Principles of Midwifery Care in a Transcultural Context’  by Eileen Russell-Roberts

British naming structures are often different from those of other cultures. To address a woman as ‘Mrs Begum’ is literally to call her ‘Mrs Mrs’. In many cultures women retain their own names after marriage although the children will have their father’s surname. The situation is further complicated by the adoption by some members of minority ethnic groups, of the British address system. Technically the name ‘Singh’ is applicable only to a man and in India this is how it is used, however some members of the Sikh community in the United Kingdom have started using it as a surname in order to reduce complications in their daily lives. A midwife should establish how her client wishes to be addressed rather than imposing the majority culture upon her or assuming that all clients from a particular group wish to be addressed the same way. It is important to pronounce names correctly since mispronunciation may result in a word which is offensive. It is unlikely that a client will object to a polite inquiry about her correct name and preferred method of address if it is asked as an open question, in fact she may find it reassuring that her carer is sufficiently interested to ask.

Exercise taken from ‘Principles of Midwifery Care in a Transcultural Context’ by Eileen Russell-Roberts.

Reflection Activity 2.2

7 Reflect upon your own name by answering the following questions:

1. From where did it originate?
2. How was it chosen?
3. Are there any specific meanings associated with your name? (Look up your name in a ‘baby names’ book is it there?)
4. Do you consider the meaning of your name to be positive?  In what way?
5. Have you shortened your name? Or use a nickname?  Have you changed your name by deed poll?
6. Are there any aspects of your name which you don’t ordinarily use every day? (such as a middle name?) Why not?
7. Are there any names you dislike? And would never chose to give your own children?  If the answer is yes, why do you think this is?

How do you wish to be addressed? e, Dr, Mrs, Miss, Mr, Ms, Sir…  are there any designations you would object to being called? (If a small group discussion is possible, compare your answers.  Consider issues of gender and age; are these important factors when addressing someone from your own cultural background?)

One area where there is strong evidence of barriers to access for ethnic minorities is that of palliative care. Iqbal 1994; Hill and Penso 1995; and Powell 1999 all report low uptake of palliative care by ethnic minorities. A consistent finding in all these studies is the importance of poor communication as a barrier to access e.g. lack of information provision in appropriate languages. Recommendations made by researchers include improved interpreting services and appropriate literature; more systematic referral arrangements with GPs; and improved ethnic monitoring in palliative care. These seem to be recommendations that are made whenever research is undertaken into the use made by ethnic minorities of health services. Another critical issue is the knowledge and understanding of minority cultures among those who are supposed to be providing the care (Anderson 2000). Knowledge includes understanding the findings of research.

Cancer: Implications for service providers

• It is important to encourage people from minority ethnic groups, at least as much as for the general population, to be aware of the early signs of disease.
• Encourage use of cervical and breast screening services, and train in self-examination.
• Encourage people to attend dentists, and be aware of the risks of chewing paan and tobacco.
• Be prepared to discuss the provision and role of palliative care, and encourage referral.

Respiratory conditions

Perhaps surprisingly, there does not seem to be any evidence that common conditions such as the common cold, influenza and so on, show any differences between the majority population and minority ethnic groups. Many people will blame their poor health on the weather, and those who are migrants from tropic countries will suggest that they miss the warmer conditions. However, there are no data to suggest that such groups are more susceptible to these infectious diseases in general. That said, there have been studies that show that migrant minorities tend to live in poorer housing (Johnson & Tomlins 2002) and that this can have effects on respiratory diseases, including asthma and TB as well.

Asthma

While there is some evidence that asthma may be provoked by migration, most notably from rural to urban settings, there is no UK based survey data which indicates a clear ethnic variation in the prevalence (or treatment) of this disease. However, it is clear that some communities (notably the South Asian) regard this as a disease which they are unfamiliar with or blame on ‘British living conditions’ (Johnson & Verma 1999). A Doncaster health needs survey reported that Pakistani respondents were twice as likely as the average (14% : 7% overall) to report having asthma. The main concern for the community health practitioner may be that this condition is still regarded by some people as ‘shameful’, or they may be worried that it will affect the chances of their children getting married. As it seems to be getting more common among all communities, perhaps because of modern living and pollution, it is important to assure families that asthma is ‘normal’ among children. When discussing the management of asthma with a minority ethnic group family, it would be advisable to be sure that you know what they understand about the cause of the disease, and their ability to affect their housing conditions. It is also very important to make sure that instructions for using the inhaler and preventive treatment are properly understood, especially when dealing with someone whose first language is not English. ‘Yes, I understand’ may be a polite thing to say, but it can be dangerous if it is said only to avoid a complicated set of instructions that you do not understand!

Tuberculosis (TB)

There is a widely held assumption among health professionals that Tuberculosis is a disease associated with minority ethnic groups - most specifically with those of South Asian origin. In practical terms, this used to result in the more-or-less automatic application of BCG vaccination to children born in this ethnic group (Pharoah, Watson & Sen 1996). This policy is not, however, followed everywhere, and it is important to check what the local protocols are and whether these might be changed to provide added protection. The report of the Nottingham DPH in 1996 noted that:

‘Over 50% of cases of TB in Nottingham (1990-1995) were found among individuals with an ethnic minority background’

Bakhshi, Hawker and Ali (1997), further, conclude that ‘from about the second decade of the next century TB in the UK will almost be entirely a problem of ethnic minorities ... even if new infection was eliminated now in Asian people’.

A survey of all cases of TB notified to environmental health medical officers for a 6 month period beginning in January 1988 was reported in Thorax (MRCCEG 1992). The notification rate in the white population was 4.7 / 100,000 per year (a decline of 7.2% per annum since 1978). In contrast the rate in the population of Indian ethnic origin was 134.6 / 100,000 per year (Relative Risk 28.6), whilst in the Pakistani or Bangladeshi population the figure was 100.5 /100,000 per year (RR 21.4). In both the Pakistani and Bangladeshi populations there was a decline of around 6% a year (since 1978) in the annual rate of notified disease. This epidemiological evidence suggests that there are major differences in the prevalence of disease between the white population and certain ethnic groups. However it has been suggested (Houston and Fanning 1994) that there has recently been a resurgence of TB infection in industrialised countries, which has been associated with the global epidemic of HIV infection. Some evidence based upon a national survey relating to England and Wales confirms this. Bhatti et al (1995) found that between 1988 and 1992 notifications of TB increased by 12%. Their evidence suggested that the national rise in TB affected only the poorest areas. Moreover the authors argue that local data pertaining to the London Borough of Hackney suggests that socio-economic factors are largely responsible for the increase in TB, and that recent immigration from an endemic area accounts for only a small proportion of the increase. This seems to be likely because an analysis using data from London (Mangtani et al 1995) found that a variable reflecting the influence of changes in the proportion of migrants from New Commonwealth countries was not significantly related to the rate of change in tuberculosis infection in London. Rates of unemployment were however significantly related to changes in the level of TB infection. Harding et al (1995) who surveyed TB in Croydon between 1988 and 1991 found that TB occurred more frequently in people of Indian Sub-Continent (ISC) ethnic origin; of 222 cases presenting at a chest clinic, 65% were of ISC origin, 22% were Caucasian (i.e. White), and 11% were Afro-Caribbean. For Bangladeshi men, Balarajan & Raleigh (1997) present an SMR (age-adjusted death rate) from TB of 422. In Birmingham, Bakhshi and colleagues (1997) present notification rates showing rates between 8.9/100,000 (‘Caucasian’ whites) and 149.9 per hundred thousand, with some effect of ‘birthplace outside UK’.

Another major national review of TB notifications gives additional support to the ‘ethnic patterning’ of this disease. Closer reading suggests that the key issue may not be ethnic origin but country of origin, since although South Asian patients made up over 40% of notifications, the rate in this ethnic group has actually declined and ‘Forty nine per cent of patients had been born abroad and the highest rates were seen in those who had recently arrived in this country’ (Kumar et al 1997). It is understood that contributory factors to the prevalence of the disease include poverty, the ‘HIV epidemic’ and homelessness. Minority ethnic patients were about twice as likely to have non-respiratory forms of the disease. A slightly higher rate of resistance to drug treatment (isoniazid) was noted in minority ethnic cases, but those of South Asian origin were very much less likely to be HIV positive.

The MRCCEG report (1992) in addition to pointing out that some ethnic groups in England and Wales had a higher rate of TB infection, also pointed out that the type of TB varied by ethnic group. Amongst white patients 80% of patients had only respiratory disease, 16% of patients had only non-respiratory disease, and 4% had both, whereas amongst those of Indian subcontinent ethnic origin 53% had only respiratory disease, 36% had only non-respiratory disease, and 11% had both. A larger proportion of patients of Indian subcontinent origin had TB lymph nodes (both extrathoracic and intrathoracic) with 16% of those with respiratory disease, and 52% of those with non-respiratory TB having lymph node disease. Amongst white patients the figures were 2%, and 37% respectively.

Diseases of the circulatory system

There are a number of different conditions which may be grouped together here. These include ischaemic heart disease, hypertension, stroke and other forms of problems related to blood flow. Many of these are also thought to be linked to diabetes in some way or another, although we discuss that disease in a separate section. One problem for the epidemiologist is that not all heart and circulatory system diseases seem to behave in the same way and that some papers refer to ‘CHD’ (Coronary Heart Disease’, others to IHD (Ischaemic Heart Disease), and others to CVD (Cardio-Vascular Disease), each of which covers a slightly different group of disorders.

Evidence relating to the incidence or prevalence of circulatory system disease in the United Kingdom amongst ethnic populations has proved difficult to obtain, or has proved contradictory. Cruickshank, who has researched the area extensively, suggests that while there is a ‘clear excess of stroke deaths’ for people of West Indian birth, (at 2-2.5 times the white rate: PMR 214), this is effectively cancelled-out by the deficit in deaths from Ischaemic Heart Disease, when taking into account the raised levels of death from hypertensive (PMR 627) and renal disease (PMR 233) (Cruickshank & Hughes 1989). This is not however, as he points out, a reason for failing to tackle raised CVD morbidity. Among Asian populations, however, the mortality risk appears to be greatest from CHD (Ischaemic causes), which has been tied to the so-called ‘insulin-resistance’ effect - linked, therefore to action relating to diabetes. On the other hand, Balarajan and Raleigh (1997) have recently shown mortality rates among Bangladeshi men to be significantly raised in both CHD (SMR 148) and CVD (SMR 267), as well as from cirrhosis (SMR 254).

Overall, it is clear that most people from minority ethnic backgrounds, male or female, are at higher risk of some form of heart disease than the majority ‘white’ population. Those of Irish background, by and large, share the same risk level as the majority white group, although there are some signs that they may be at slightly higher risk (Health Survey for England, 2001). The one group which consistently appears to have a lower risk of circulatory disease is that of Chinese origin, which shows about one third of the ‘overall’ average rate of angina, less ischaemic heart disease generally, and lower blood pressure. African-Caribbean women, on the other hand, and in contrast to the pattern for white women, seem to be at higher risk of many circulatory diseases than black men. The reasons for these patterns are not entirely clear, since for many of the normal risk factors (especially smoking, diet and alcohol) there are considerable differences between minority cultural groups, especially within the population of South Asian origin, which are not reflected in variation of their risk of heart and circulatory diseases. It may be, of course, that the apparently increased risk is simply a reflection of the lower risk of suffering from some other disease such as the cancers, or a side-effect of another disorder (such as diabetes or the haemoglobinopathies). Other alternative hypotheses include the known fact that stress, and possibly the fear of racial harassment, may be a cause of raised blood pressure and related disorders. It is also argued that there is a much higher risk of insulin resistance, and related circulatory disorders, although this is still the subject of debate and ongoing research (British Heart Foundation Factfile 04/2000).

Coronary heart disease and hypertension

Over one in four deaths in Britain are attributable directly to CHD, and it is probably the commonest form of disease, as well as being to a large extent preventable. Very high levels of undetected heart disease are known to exist, so that there is no accurate estimation possible of incidence or prevalence. Best estimates are derived from mortality data, which show that ‘Asian immigrants’ (i.e. those born in South Asia) display SMRs (Standardised Mortality ratios) around 120 - i.e. an excess of about 20% deaths in both men and women aged 20-70. Other estimates suggest higher rates, particularly among diabetics (Chaturvedi & Fuller 1996). The pattern for those born in the West Indies or other sources of minority ethnic migration does not show such a difference. At present, however, there is no good data for ‘ethnicity’, although in this case, given the age-related patterns, it may be possible to accept birthplace as a suitable proxy for ethnic origin. There is some evidence of a need for different patterns of prescribing, since ACE inhibitors have been shown to be somewhat less effective in the control of hypertension in African-Caribbean patients (Beevers, 1989). More important, in the view of most epidemiologists, is advice on lifestyle and prevention of coronary heart disease, particularly by encouraging more exercise (Johnson 2000).

Mortality from ischaemic heart disease is known to be more common among men from all South Asian backgrounds but lower among men from African-Caribbean origins. This may be offset by the latter group’s higher propensity to stroke (see below). African-Caribbean women, on the other hand, have a higher than average likelihood of angina. For all groups, the use of the standard ‘Rose Angina’ screening questionnaire is problematic: studies which combine this with examination of medical history and physical measurements have shown that the Questionnaire leads to considerable under-reporting, especially among South Asian women (Health Survey for England, 2001). This may be due to poor translation or some cultural problems of understanding (Fischbaker et al 2000; Rose & Blackburn 1986). These higher risk levels are, however, linked to other risk factors, particularly raised obesity (as measured by waist-hip ratio) and blood pressure.

When age is taken into account, people from minority ethnic groups in the most recent study appeared to have lower blood pressure levels. This is particularly the case for Chinese, Pakistani and Bangladeshi men, and Bangladeshi and Chinese women. However, Pakistani and African-Caribbean women seem to have higher systolic blood pressures than expected (HSfE 2001). Older studies (Cappuccio et al 1997) had suggested generally higher levels of blood pressure among men of all African-Caribbean and South Asian origins. As with the white population, raised blood pressure levels are found more often, on screening, than are reported as having been diagnosed after visiting the GP or nurse clinic. This does not always mean that the condition has not been found, but that the person asked does not recall being told about it (see also Johnson et al 2000, which showed that only African-Caribbean men and women reported being told that they had high blood pressure at rates greater than the national average). In particular, the data do show that, if anything, people of African-Caribbean and South Asian origin, if they do have raised blood pressure, are more likely to be undergoing treatment (i.e. have had a prescription) for it. In many cases, for women, high blood pressure was picked up during ante-natal screening.

Stroke and cardiovascular disease

Stroke is another condition which has major consequences for NHS resources, both in terms of immediate treatment and in the use of subsequent services to support victims with resultant disability. While there is some evidence of ethnic differences in circulatory disease, there is less clarity on the precise nature or direction of these. There is rather more information available on the broader area of Coronary Heart Disease (CHD) than on Cardiovascular Disease (CVD) issues.

Evidence from the United States however (Zweifler et al 1995) would seem to suggest that ethnicity may be a risk factor for Stroke, and that minority ethnic populations are less prone to stroke than ‘whites’. The authors (Zweifler et al 1995) prospectively evaluated 542 consecutive patients (416 whites, 77 Mexican Americans, and 55 Blacks). The findings suggested that whites had a higher proportion of transient ischaemic attacks (32% versus 18% and 17% for Blacks and Mexican Americans, respectively); there were no statistically significant differences between the groups in terms of prior stroke, hypertension, myocardial infarction, smoking, initial systolic blood pressure, serum cholesterol levels, and functional deficit. However, another paper emanating from the United States (Alter 1994) makes the observation that for the United States population as a whole a national survey suggests that “Blacks carry a disproportionate burden of strokes relative to the number of blacks in the population.” The author also suggests that whites are more likely to suffer from large vessel and embolic strokes whereas blacks suffer a higher frequency of small vessel and haemorrhagic stroke. The extent to which these findings are generalisable to the United Kingdom is unclear.

The Health Survey for England (2001) based on 1999 survey data, and the HEA ‘Health & Lifestyle’ survey (conducted in 1994: Johnson et al 2000), show that while Chinese people again show low rates, reported levels of cerebro-vascular disease (stroke) among Caribbean men and Indian people are raised African-Caribbean men are twice as likely to die of a stroke than the national average, and show an age-adjusted risk ratio of 1.66, which gives considerable case for concern. The same data show that the relationship with obesity, which is normally seen as a major risk factor, may be misleading as fewer people from minority groups show classic obesity in terms of their ‘BMI’ (body-mass index). People from minority ethnic groups may be different shapes and sizes than the general population. The measurement of the ratio between waist and hip (WHR) on the other hand, provides a much better estimate of the group at risk, particularly considering those whose waist-hip ratio is greater than 0.95 (men) or .85 (women).

Heart and circulatory disease: implications for practice

• It is clear that there are some different risk factors, and that communication problems need to be overcome in the management and prevention of heart disease.
• Take chest pain seriously and refer earlier than for the majority population.
• Don't be fooled by a low BMI measurement: look at the WHR.
• Check blood cholesterol levels in South Asian people.
• Don't assume that South Asian people do not smoke or drink although avoid causing offence by suggesting that they do! Those who are smokers, or drinkers, may be at higher risk than white people.
• Take all opportunities to screen people of minority origins.
• Take care to ensure that advice is given sensitively (allowing for different diet) and that messages are understood if spoken English is poor.
• ENCOURAGE EXERCISE, especially among Asian men and women.

Point for Revision:

 Do you remember how to measure and calculate BMI and WHR? what are the ‘risky levels’?

Reminder:

• BMI Body Mass Index Weight in Kilograms, divided by the Square of the height in metres (i.e. height times height). Obesity is said to be an index of greater than 30.0, and overweight begins at an index value of 25.0 while 40.0 is dangerously obese.
• WHR Waist-Hip ratio the waist measurement divided by the hip anything over 1.00 is risky, and for South Asians, caution should be expressed at 0.85 (women) or 0.95 (men) with advice to take more physical exercise.

Diabetes

Diabetes is a ‘group of disorders with common features’ with particular significance for the NHS, being estimated to be responsible for around 5% of UK health expenditure (Laing 1989; Grimshaw 1996). It includes a number of closely related but clinically distinguishable conditions: viz Insulin Dependent Diabetes Mellitus (IDDM or Type 1), Non-Insulin Dependent Diabetes Mellitus (NIDDM or Type 2), and Gestational Diabetes Mellitus (GDM). It can also be seen to be related to other disorders such as hypertension, cerebrovascular and ischaemic heart disease. It is recognised that ‘the two population characteristics which most strongly influence the numbers of people with diabetes are the age and sex structure of the population and the ethnic mix of the population’ (Stevens and Raftery 1994:33). Some writers describe diabetes as a ‘disease of affluence’, since it is more commonly found in western urban settings and is associated with better diets and living conditions as well as with overweight. There is little evidence of diabetes being a major problem in India, but it is relatively very common among minority ethnic groups descended from migrants to Britain, and among the ‘first generation’ of settlers as well. However, there are two types of diabetes, and the classical ‘Type 1’ (insulin dependent, early-onset) variety which affects children and young people due to a failure of the insulin producing pancreas is rare among ethnic minorities. So-called ‘late-onset’, non-insulin dependent (NIDDM) Type II diabetes is, however, a major threat to the health of minority ethnic groups, and requires active steps to prevent and manage it, including positive encouragement to take exercise and to reduce calorie intake or weight gain.

Evidence from an English study sheds some light upon the prevalence of diabetes amongst South Asian communities in Coventry. Screening for diabetes in an electoral ward in Coventry between December 1986 and April 1989 indicated (Simmons et al 1992) that the risk of Type 2 diabetes amongst Asians is greater than amongst ‘Europeans’, and that the likelihood of having diabetes varies by ethnic group. Their findings showed that that Gujerati Moslems had the highest age-adjusted prevalence per 1000 population of Type 2 diabetes (males: 160, females 204) and that there was raised prevalence in Punjabi Hindus (males: 113, females 116). This compares with lower figures for other Punjabi Sikhs (males: 89, females: 75); Pakistani Moslems (males: 91, females: 103); Gujerati Hindus (males: 84, females 88). This led Simmons to conclude that the higher prevalence of diabetes in these Asians groups (in spite of their dietary, cultural, and socio-economic diversity) suggests that predisposition to Type 2 diabetes is inherited, although environmental factors may play a part.

Calculations based on the Simmonds (Coventry) study and other data produce the following prevalences and risk ratios for Asian, African-Caribbean and ‘Europid’ (White) populations for combined Type 1 and Type 2:

Table D: Prevalence of clinically diagnosed diabetes (Types 1 & 2) (after Williams 1994)

Age Group South Asian African-Caribbean White RR (Asian) RR (A/C) Male:           20-39 15.5   6.2 1:2.5   40-59 82.0   26.7 1:3.1   60-79 172.7   46.3 1:3.7   45-74   245.3 18.5   1:13.3   Female:           20-39 11.5   3.2 1:3.6   40-59 59.0   37.8 1:1.6   60-79 142.9   42.7 1:3.3   45-74   129.6 17.2   1:7.5

NB: Relative risk ratios I mean by this, the risk in the index group (Asian, African-Caribbean) compared to the ‘norm’ (1) of the majority white group thus, 1:2.5 means that Asians in this age/sex group were between two and three times as likely as whites of the same age/sex to develop diabetes.

More detailed projections for specific ethnic groups are few, but Balarajan and Raleigh (1997) provide an estimate of mortality from Diabetes among Bangladeshi men at a very high level - SMR 685. The data from the Health Survey for England, based on self-reported memory of being told the diagnosis, gave very high rates for both men and women, and highest rates among Bangladeshi men (prevalence 10.6%, more than five times the expected rate) and African-Caribbean women (prevalence 7.9%, a Risk Ratio of 4.19). Only among Chinese and Irish populations were the rates not higher than for the general population.

Some research (Burden et al 1992) identifies an increased incidence of End-Stage Renal Failure (ESRF) secondary to diabetes mellitus in Asian ethnic groups in the United Kingdom. The authors calculated the incidence of treated ESRF within the county of Leicestershire between 1979 and 1988, using a measure of incidence known as person time at risk incidence. Patients of ‘ethnic’ (minority - i.e. Asian) origin had an incidence of ESRF of 486.6 (95% CI, 185.1 to 788.1) cases per million person years per year, compared with 35.6 (17 to 54.2) for White Caucasians (a Relative Risk of 13.7). All the Asian patients had NIDDM.

In another paper Simmons (1992), assesses the prevalence of type 2 diabetes and its relationship to parity (childbearing). It is pointed out that Asians have a high prevalence of type 2 diabetes, which commences at an earlier age than in the general population. Amongst ‘European’ women in the 30-64 years age group the prevalence of type 2 diabetes was lower in women with 1-2 deliveries than amongst grand multiparous (parity ³5) women, or nulliparous women. Amongst Asian women in the same age group (30-64 years) the prevalence of type 2 diabetes was much higher, and especially high in women who had had 5 or more children.

Other evidence (Koukkou et al, 1995) suggests that within the catchment area of one Central London hospital (based upon a retrospective study of 703 women selected for screening for Gestational diabetes mellitus (GDM)) the prevalence of GDM was around 2% overall, but Asians and Africans / Afro-Caribbeans had between 4 and 2 times more risk of having GDM relative to Caucasians (p<0.01). The increased incidence of GDM influenced the mode of delivery. GDM has also been associated with an increased risk of perinatal and maternal morbidity (e.g. macrosomia) and an increased risk of developing diabetes in the future.

Gujral (1993) estimated the incidence of lower extremity amputation in Asians (patients were defined as of ethnic origin if they or their forefathers originated from the Indian subcontinent) and compared it with the incidence of amputation amongst white Caucasians in Leicestershire during the period 1980-1985. After adjusting for age and sex the estimated population of patients requiring lower extremity amputation who were Asian with diabetes was estimated at 3.4 per 10,000 population, compared with a much higher figure of 14.2 per 10,000 population amongst Caucasian whites. Burden et al (1992) estimated that diabetes in patients of Asian origin is nearly fourteen times more likely to lead to treatment for end stage renal failure (ESRF) than for white Caucasians (486.6:35.6 cases). Clark et al (1993) also suggest that diabetes mellitus is more often a cause of end stage renal failure in Blacks than in Caucasians, although the relationship was not statistically significant (0.1> P> 0.05).

Renal Failure

Kidney (Renal) failure can lead to very high levels of need for health care, whether in the hospital or at home, and to heavy levels of demand for nursing support. It is particularly common among Asian groups, where ESRF (end stage renal failure) appears to occur at younger ages than for the general white population. The condition is closely associated with two others which have already been shown to have a raised prevalence among these populations: hypertension and diabetes.

It has been reported that in the United States minority ethnic populations have higher rates of ESRF for each of the 3 most important causes of ESRF including hypertension, diabetes, and glomerulonephritis (Feldman et al 1992). Findings relating to the Thames regions (Anon 1994) suggest that take up of renal replacement therapy is higher amongst ethnic minorities in London than amongst the white population. The relative risk of ESRF in both the Black and Asian population compared to the white population was 2.8; furthermore age-sex specific ratios rose with age, to 4.0 for the black population and 4.6 for the Asian population in older groups. It was concluded that “Whilst these findings could be partly explained by access factors (ethnic populations tend to live closer to renal units), to numerator and denominator inaccuracies (including selective under enumeration), or to the method of ascription of ethnicity, it is probably mainly due to higher incidence of ESRF in these populations. Separate work is ongoing to separate the effect of access from ethnicity.”

Other findings presented by Clark et al (1993) for the United Kingdom suggest that there is an increased prevalence of dialysis-dependent renal failure in minority ethnic populations within the West Midlands. Using a sample of 1,038 adult patients with dialysis dependent renal failure treated between 1981 and 1991 the authors reached the conclusion that in comparison with ‘Caucasians’ (Whites) a greater proportion of Asians (p<0.001) and Blacks (p<0.001) had ESRF. The relative risk of ESRF in Asians in comparison with Caucasians was 1.76 (95% CI 1.46 - 2.10), and for Blacks it was 1.76 (95% CI 1.39 - 2.20). Amongst Asians hypertension / vascular disease or tuberculosis were more frequent causes of end stage renal failure than amongst Caucasians, whereas diabetes mellitus appeared to be a more common cause of end stage renal failure amongst Blacks than amongst Asians or Caucasians, although this finding did not prove to be statistically significant (0.1 > P > 0.05). Hypertension and Lupus (SLE) were also more common causes of ESRF among ‘Blacks’. The authors qualify their findings by suggesting that if “these data are confirmed by prospective study they have implications for service provision.” Other UK evidence also suggests there is a higher incidence of ESRF amongst minority groups. Evidence relating to Leicester (cited by Higgins et al 1995) suggests that age adjusted annual incidences of end stage renal failure amongst UK Indo-Asians per annum were 123 and 115 per million population respectively, which compares with 43 and 21.5 respectively for the White population.

Burden et al (1992) also cite UK evidence that implies that there is a higher incidence of ESRF secondary to diabetes mellitus in ethnic groups in Leicestershire. The incidence of ESRF in Asian patients with diabetes mellitus was 486.6 (95% Confidence Interval, 185.1 to 788.1) cases per million person years, which compares with 35.6 (17 to 54.2) in White Caucasians. Another (Thames region) study gave similar estimates of ethnic differentials amongst diabetics: - ESRF rates in the South Asian diabetic population 1974-1988 were estimated at 420 per million compared to 53 in the white diabetic population, a factor of 8:1, and demand for ESRF services was also higher in the non-diabetic Asian population.

Dental Health

There is a small but growing literature relevant to dental health among minorities. It appears that while there is a low level of service utilisation among older people of minority origin, there is growing concern about their oral health - often related to gum diseases as much as dental caries, while levels of dental caries among Asian children seem to be leading to a resurgence in health care need. There is some evidence that different approaches for preventive dentistry may be required among Asian populations (Holt 1990; Bedi 1989). Attendance at dental services provides an effective way of screening for other diseases including oral cancers.

In terms of oral health, one article (Pearson et al 1999) assessed the use of dental services in a sample of Bangladeshi adults living in Tower Hamlets. This demonstrated the existence of language difficulties and a perception that check-ups are of little value as being associated with low uptake, together with high risk behaviour in terms of paan chewing, especially among women. Another study (Williams et al 1995) examined dentists’ perceptions of the difficulties they encounter in providing dental care for British Asians. This identified language as the major barrier to care. Wider use of link workers was advocated by the authors, together with ensuring that contracts relating to dental care specifically address the needs of minority communities. Other research on general dental health indicates that being a member of a minority ethnic group in the UK does not necessarily correspond to having poorer oral health. These papers link to a much larger literature on ‘link workers’ and advocacy approaches to improving health care access.

Systemic Lupus Erythematosus (SLE, or ‘Lupus’)

Lupus (Systemic Lupus Erythematosus, SLE) is a complex, incurable but controllable condition that disproportionately affects women, particularly those of minority ethnic origin. Variants of non-systemic lupus (largely presenting as skin rashes) and drug-induced lupus (arising reaction to certain prescription drugs) are less common but do not appear to show gender or ethnic bias. Lupus is, essentially, an auto-immune type of rheumatic disease, and its presentation differs in each individual case. It is particularly prevalent among women aged between 15 and 55 (about 1 in every 1,000 women of child-bearing age), making it one of the most common conditions. Women make up 90% of cases, and those of Black (African-Caribbean) or Asian origin appear to be between 2.5 and 3 times more likely to have the disease than white women (Johnson AE et al 1995). Current best estimates suggest there may be about 40,000 people living with lupus in the UK (Hughes 1985), although this is likely to be an underestimate, as screening has identified many undiagnosed cases (Johnson AE et al 1996). Research in the United States suggests that more people have lupus than conditions such as AIDS (HIV), multiple sclerosis, sickle-cell anaemia and cystic fibrosis.

There is little effective research or clinical guidance available regarding the presentation and management of the disease. Public awareness of the condition remains low in the UK. The disease causes inflammation of various parts of the body: these may be joints, skin, lungs, heart, kidney or brain. Over-production of antibodies leads to inflammation, pain and swelling and associated symptoms may include fatigue, anaemia, hair loss, mouth ulcers and depression as well as joint pain. The condition appears to react to stress, and can go into unexpected remission or flare up. Other triggers may include exposure to strong sunlight, infections, and certain medications. It is helpful to explain to relatives that the condition is not infectious, and does not appear to be inherited. Management through complementary, relaxing, therapies appears to be helpful and a diet based on natural unprocessed foods (high in fruit and vegetables) as well as regular gentle exercise is thought to be beneficial (Barwick 1995, Wallace 1995).

The Haemoglobinopathies and Thalassaemias

No discussion of the epidemiology of ethnic diversity would be complete without discussion of two other conditions that are generally regarded as being effectively ‘ethnic-specific’ diseases. By this, we mean conditions that are ‘rare’ among the native White population of Britain, and have generally been discussed in the literature only in the context of ‘ethnic medicine’. Indeed, often descriptions of ‘ethnic-specific needs’ are dominated by discussion of the inherited blood disorders described as haemoglobinopathies. This label covers a number of forms of the diseases, including S, C, D, and ‘O-Arab’ haemoglobinopathy. Both these and the thalassaemias are hereditary, genetically determined (recessive), so that a ‘trait’ (carrier) state can be identified but the need for treatment is confined to the rarer homozygotic state.

Beta-Thalassaemia is most commonly associated with populations of South Asian, Middle Eastern, South China and Mediterranean origin (there being about 600 people with this disease in UK). The most common form of haemoglobinopathy, Sickle Cell, is (erroneously) regarded as effectively a marker of the African diaspora, being found at higher rates among people of West and Central African origin, and somewhat lower rates among those of West Indian descent. (It is also found at high levels in the Middle East and India, as one of the four haplotypes of sickle cell (Arabian-Indian) is known to have arisen in Arabia and transferred to India or vice-versa). It is important to note that cases of both have been observed in ‘white’ patients (including North African, Arab, Iranian, Mediterranean and Eastern European), and that with the increasing patterns of inter-marriage, the association with phenotypical appearance and known family history will become more problematic. Best estimates are that there may be about 10,000 people with SCD in Britain (Davies et al 2000). Recently attention has been drawn to the difficulties of basing selective ante-natal screening on an ethnicity screening question (Dyson, 2001).

Table E: Frequency of haemoglobinopathy trait

Trait: Ethnic Group Frequency Notes Sickle Cell African-Caribbean 1 in 10 Also found in people of Mediterranean, South Asian, Arabian or 'Middle Eastern'origin (1 in 100 or possibly more) Sickle Cell West African 1 in 4   Haemoglobin C Ghanaian 1 in 6   Haemoglobin D Punjabi Sikh 1 in 100 Sometimes also in White British   Beta-Thalassaemia Cypriot 1 in 7   Beta-Thalassaemia South Asian 1 in 10 1 in 30   Beta-Thalassaemia African-Caribbean 1 in 50 Also those who describe themselves as Black British Beta-Thalassaemia White British 1 in 1000

• Note: the above refers to the likelihood of an individual carrying one gene for the condition: both parents must carry a gene associated with a haemoglobinopathy or a thalassaemia for a child to be at risk. (Type S Haemoglobinopathy with underlying beta-thalassaemia can give sickle beta-thalassaemia, similar to Sickle cell anaemia but less severe.)

Because these are inherited conditions, only emerging as a disease and problem for the individual when a child is born to parents both of whom are carriers, there is only a one-in-four chance of this happening. However, for people with the disease, there is a painful, occasionally life-threatening, and expensive future. Screening, either of children or of potential parents, has been slow to be offered in contrast to diseases such as phenylketonuria, which mostly affects white people. The service is increasingly being offered in Britain, but is associated in some minds with eugenic control (reducing 'black' births) and in other cases does not always come with the necessary high level of counselling support - and language-competent counsellors for Asian communities. It is also clear that the other necessary element for successful service provision has been a high level of awareness, and a pro-active stance, among doctors and other health workers (Gill & Modell 1998). The adoption of such an approach would also improve the quality of care, and of life, experienced by people from the African-Caribbean community. One of the most frequent complaints among that community has been the problem in getting adequate pain relief, apparently based upon a stereotype of black people seeking to obtain strong drugs which might have a street value and be sold on for profit (Johnson & Sangster 1995). In such ways, through (possibly unexpressed) stereotypes and through failure to act positively, does the health service discriminate.

Beta-Thalassaemia

Anaemia requiring frequent transfusion is common. This must be coupled with regular iron-removal (chelation) therapy, which can be painful and is distressing for young people. Alpha-Thalassaemia Major (‘disease’ state) is associated with high probability of stillbirth. High levels of survival have however been reported in children born with thalassaemia, and good adaptation to the required lifestyle, which includes maintaining constant accessibility to transfusion centres. Nursing support is helpful, although most people manage self-treatment in time. Screening, pre-natal diagnosis and genetic counselling support are very variably available, and should be offered through national support networks as appropriate, especially in young people contemplating starting a family. In Cyprus, a national campaign has brought the levels of affected births down to small numbers, and awareness of the issues among the Cypriot communities (Greek and Turkish) is high. The main groups experiencing new births are now the Pakistani communities, though nurses need to avoid blaming this on consanguinity (Ahmad, 2000)

Sickle cell

This disease exhibits ‘extraordinary clinical heterogeneity’ (Weatherall 2001). Most patients adapt well to anaemia, although some may require treatment. The main problems are episodes of severe infection (and reduced immunity), and acute episodes known as ‘sickling crises’ associated with severe pain, respiratory failure, or even strokes. Prevention may require prophylactic penicillin and pneumococcal vaccination. As with Beta-Thalassaemia, there is very great variation in the provision of support services and screening between areas, although again, in areas of major settlement by people of African-Caribbean origin, there are usually local community-based branches of groups such as OSCAR (Organisation for Sickle Cell Anaemia Relief) or the Sickle-Cell Society.

This discussion of the haemoglobinopathies provides an example of one of the strongest links between ethnic community membership and vulnerability to a particular illness. Consequently it also provides a powerful case study of the imperfect relationship between health care need and health care provision. Readers are strongly urged to read Elizabeth N Anionwu and Karl Atkin’s (2001) book on The Politics of Sickle Cell and Thalassaemia which provides a readable account of health care issues in this area with clear implications for clinical practice.

Exercise 2.3 Group activity

Identify local sources of support for people diagnosed as living with (or having children with) one of the Haemoglobinopathies.

If your local hospital and/or GP and community health clinic cannot help when you first ask for this, share the information you get with them.

Hint: contact your local Library, Citizens Advice Bureau, Race Equality Council and/or Community Health Council for information.

Disability, Visual and auditory impairment

There is no agreed, comprehensive or reliable source of information on the prevalence of visual impairment, or of any other disability, among minority ethnic groups (Ahmad 2000). Some estimates have been made: the best relate to deafness and hearing loss, on which there is now a significant literature (Ahmad et al 1998; Chamba et al 1998). There are no national data on the prevalence of Learning Disability. A few local studies have been unable to check the accuracy of registration in social services files, which appear to show fewer than expected cases of South Asian origin. It is unclear whether this arises because of non-registration by families fearing ‘shame’, or is due to misdiagnosis by staff unfamiliar with minority ethnic cultural and educational developmental norms. In respect of visual impairment, the best estimate available appears to be that based on the RNIB’s work, which suggests that there are ‘over 100,000 Blind or partially sighted people of minority ethnic origin’ in Britain (cited by EMERGE). This figure has also been cited as ‘100,000 blind or visually impaired Asians’, without attribution to a specific source (see Johnson & Scase 2000). It should also be noted that the majority of studies of minority ethnic groups (and their health) in Britain have not collected data about impairment or disability. The exception is an older study by Bhalla and Blakemore (1981) which showed high reported rates of sight problems (61% for African-Caribbean and 53% Asian contrasted with an older white control population at 52%). Askham et al (1995) note that among the Asian and Caribbean ‘over-50s’ interviewed, poor eyesight/eye problems were the most frequently mentioned health concern, but do not explore this issue further. Rudat’s (1994) study of minority ethnic ‘health and lifestyle’ for the Health Education Authority notes that levels of use of Dentist and Optician services amongst ethnic minorities seem to be rather lower than for the UK national population.

It is generally accepted that there are certain key variations in the prevalence of eye conditions among minorities, related in many cases to known patterns of difference in other conditions. Thus, very much higher risk rates for diabetes among populations of South Asian origin (Simmons et al 1992; Stevens & Raftery 1994) may be expected to be associated with higher rates of diabetic retinopathy in these populations. Similarly, the high rates of stroke, raised blood pressure and other circulatory disease among the black population of African-Caribbean origin is associated with higher levels of glaucoma in these groups. Evidence from America is beginning to suggest that ethnic minorities may exhibit greater functional disability due to visual impairment, than the majority white population (West et al 1997).

Eye disorders can affect all ethnic groups. However, only a minority of people with visual impairment who are eligible for registration as blind or partially sighted actually register (Bruce et al, 1991, Walker et al, 1992). Robinson et al (1994) found that those least likely to be registered were the elderly, ethnic minorities, and patients undergoing chronic ophthalmic treatment. There is some research-based evidence to suggest that there are marked differences in the distribution of eye disorders in different ethnic groups (Mann 1966, Goldstein 1980, Cruickshank and Beevers 1989, Johnson GJ et al 1998). The extent of ethnic variation has, however not been exhaustively studied, and much evidence comes from the United States of America, or inter-country comparisons, rather than being directly related to diversity within the UK populations. 

Cataracts

The most important cause of blindness in the world is the development of cataracts (opacity of the lens in the eye). There is a greater prevalence of cataracts with age, particularly in people over 50 years old (Khaw and Elkington, 1994). The prevalence of age-related cataracts is higher in the Indian subcontinent than in Europe (Chatterjee et al, 1982). Within the Asian community in the UK there is a much higher incidence of age-related cataracts when compared to Caucasians (Thompson, 1989, Das et al, 1990). Thompson’s study, being based on demand incidence, does not wholly support the widespread belief that there is under-utilisation (or avoidance) among the Asian community, although if this does exist, he may be underestimating the true levels of need. Das’s community study reports dramatically higher prevalences (24%:0 % in those aged 40-59, and 73%:41% for ages over 60). More precise description of ethnic origin of ‘Asian’ communities in research data might be helpful, as shown by the finding by Das et al (1990) that there appears to be an association between a vegetarian diet and the early onset of cataract. It is not clear whether it is the vegetarian diet itself, common among the Hindu/Gujerati population of Leicester, or some other ethnic/cultural covariate, that is the primary risk factor.

Congenital visual deficiencies

A recent investigation using data from the Derbyshire Special Needs Database has produced some interesting findings relating to the apparent prevalence of some inherited disorders (Morton et al 2002). Comparing registrations against local census data, the researchers were able to make some estimates of the incidence of certain conditions. On this basis they suggest that there were higher rates of specific learning disability, hearing loss and visual impairment among children born to families of Pakistani Mirpuri origin. This is largely attributed to autosomal recessive conditions exacerbated by the practice of cousin marriage. This explanation remains disputed as the practice is not universal, and can be shown to have other benefits in terms of health (Ahmad et al, 2000). Given the small numbers, it is not possible to make robust estimates of specific conditions, but the rate of ‘partially sighted or registered blind’ among children aged under 19 in the Derby area is estimated at around 0.27/1,000 in white and Indian groups, but nearly six times that rate (1.5/1,000) in the Pakistani group. Those recorded included two cases of Usher’s syndrome (and one in the Indian group) and two of Oculocutaneous Albinism. The researchers also noted that they believe there to be a significant underdiagnosis of squint (Amblyopia) which can lead to damage and sight loss, in these communities.

Glaucomas

Glaucoma is the third most common cause of blindness in the world and responsible for 13% of all blindness in the UK (Leske 1983). It is a range of disorders caused by a raised intraocular pressure which can produce visual field loss and, if untreated, blindness. There are two main types of glaucoma: primary open angle glaucoma (also called chronic open angle glaucoma) and acute angle closure glaucoma. The incidence of Glaucoma in different ethnic groups has been widely studied in the United States of America, and also in the Caribbean (Leske 1983; Leske et al 1994; Johnson 1998; Tielsch et al 1990). Recent British research has investigated the epidemiology of Glaucoma among African-Caribbean people living in London (Wormald et al 1994), a group with significantly higher rates of this disease. American studies suggest earlier onset and much higher rates (between x4 and x8) among Black Americans.

It is suggested by American research (Leske 1983) that one risk factor of particular relevance to minority ethnic groups may be greater susceptibility to hypertension, a factor common among UK minorities of African-Caribbean origin, although Wormald’s study did not confirm this association in British black populations. The same sources do however comment that delays in seeking treatment (or in identification of disease) may lead to higher levels of damage. Early presentation and intervention is important in the successful treatment and management of glaucoma: once blindness occurs it is irreversible (Johnson 1998). A recent study (Fraser 1999) has provided clear evidence of late-for-stage presentation by African-Caribbean patients, although he is unable to offer reasons for this. Research in other health-related areas has consistently shown late presentation and treatment among minority ethnic groups.

In certain ethnic groups, notably those of African descent (including Caribbean groups) there are inherited characteristics of the skin which predispose to keloid scarring. This is a known factor in nursing and wound care, although not highlighted by many medical texts. In respect of eye care, it has particular implications for glaucoma surgery. The use of trabeculectomy (drainage surgery) to lower intraocular pressure is regarded as relatively effective, but is associated with certain risks. ‘Being of black African origin is thought by some to be a risk factor’ (Wormald & Wilkins 1999). It is thought that the use of antimetabolites to prevent keloid scarring development may improve outcomes from this procedure, but there may be more post-operative complications. Early treatment of glaucoma to prevent irreversible damage is essential. While it appears that Asian and White groups respond equally, Black groups have a worse outcome from treatment.

Diabetes

Diabetes mellitus is the most common cause of blindness in working-aged people in the West. Up to two percent of individuals with diabetes are blind. Diabetic patients have an increased chance of having cataracts and primary open angle glaucoma. Diabetes affects vision by altering the properties of blood vessels in the eye so that they can expand locally in size, leak blood, reduce blood supply to the retina, or even for blood vessels to burst in the eye (Dodson 1992). Diabetic retinopathy can occur in both insulin-dependent and non-insulin-dependent diabetics. There does not appear to be any British research which explores ethnic variation in the prevalence of retinopathy, but a study in New Zealand shows that ethnic minorities (Maori and Pacific Islander) are, for no apparently obvious reason, most likely to exhibit diabetes-related blindness (Simmons et al 1996).

Perceptions, attitudes and behaviour

Orticio (1994) has observed that stigmatisation of blindness is common in all societies and cultures. Her conclusions, addressed to the situation in the multi-cultural society of the United States of America, were that ‘value orientations (to blindness) vary among different cultures ... cultural values dictate social behaviour’. It is commonly reported that all forms of disability or physical and mental impairment are seen as problematic among many South Asian cultural groups. In particular, it is suggested that the response from the community is more likely to be one of rejection or pity, rather than help, and that reference will be made to ‘sin’ or ‘fault’. This can make it very difficult for family members to be open about their problems, in case the family’s ‘honour’ (izzat) is affected, and thus the marriageability of other members of the family. That said, cases of families being happy to acknowledge the needs of their members are not uncommon, and there are many examples of positive responses among communities to appeals for help and support. There are clearly fine distinctions to be drawn, and other religious obligations (notably but not exclusively in Islam) provide incentives to offer such assistance to the less fortunate. Work with the deaf, for example, has shown that it is possible to discuss similar issues openly in Asian communities, and move forward (Chamba 1999).

Other issues

Szymanski and Trueba (1994) suggest that the social processes affecting people with disabilities closely resemble the marginalisation of racial and minority ethnic groups. ‘Castification’ based on cultural myths creates artificial hierarchies within communities of disability. It is important to avoid this process, while retaining ‘ethnic sensitivity’ in dealing with the needs of people from specific ethnic-cultural backgrounds.

It is important to be aware that a small number of ethnic-minority run organisations for people with disabilities do exist, mostly functioning as self help and lobbying groups. They also provide a degree of support and some information services to their communities. These include the Association of Blind Asians, and the Organisation of Blind African Caribbeans (OBAC), and other more local groups: nurses working in any area should take steps to collect information about the resources that are available locally. (See appendix for list of some examples of such national and local bodies)

Exercise 2.4 Group activity

Identify local sources of support for BME people diagnosed as living with (or having children with) a disability.

Index these against ethnic or religious groups as well as by condition, and consider which groups (in either scheme) are poorly represented.

Hint: contact your local Library, Citizens Advice Bureau, Race Equality Council and/or Community Health Council for information.

Course tutors may wish to consider if a compilation of such project information should be added to their local information resources and offered to local hospitals etc.

NB: This could be a formative or summative assessable project.

The experience of any disability can be life transforming and the negotiation of its impact upon how someone perceives themselves can be as significant as it is upon how they manage their life. All readers are strongly urged to read Waqar I U Ahmad’s edited book (2000) Ethnicity, Disability and Chronic Illness, Buckingham, Open University Press. Amongst other things the chapters in this book provide valuable insight into cultural understandings of disability; and into how disability is experienced in relation to ethnic identity.

Mental Health

Mental illness includes a wide variety of conditions and diagnoses, and is responded to with treatment deriving from a number of sources, including both NHS and ‘joint finance’ as well as other non NHS services. It is not clear to what extent the higher level of involvement in religious activity has a protective or supportive effect in many minority communities. In addition to the input of Local Authority social service departments, provision is also governed by the Mental Health Acts, which place certain powers and responsibilities on the criminal justice system. There are well established patterns of ethnic differentiation in the experience of mental health and use or uptake of relevant services, recorded by both social science as well as medical researchers. In particular, these suggest an over-representation of people of African-Caribbean origin (and under-use by those of South Asian background) as well as different patterns of experience within mental health services - notably in respect of diagnoses of schizophrenia and paranoid psychoses and the use of more interventionist forms of treatment (restraint, drugs and electro-therapy) (see Ahmad, Sheldon & Stewart 1996; also Nazroo 1997, for more detailed review of this literature). This is not the place to continue that debate nor to attempt to resolve the causes of these patterns. Because of the contested nature of diagnosis in this field (see Johnson 1994, Halpern 1993), there are inherent difficulties in presenting definitive projections of prevalence. It is probably certain that current recording has underestimated the need for mental health services (based on observed diagnosis) among British Asian populations (Williams et al 1997).

There are, however, certain aspects of mental health treatment which suggest that there should be particular attention paid to ethnic variation in the population. Diagnosis, and treatment, are peculiarly dependent upon communication (both in terms of direct language and cultural sensitivity to conceptual models and metaphor) and hence questions of training and interpretation are particularly significant (Johnson 1996). Many Trusts employ specialist transcultural psychiatric nurses, indeed, the Mental Health Act 1983 also requires Local Authorities to take explicit note of ethno-cultural differences and to have appropriately trained social workers available. There are also clear implications of ‘ethnicity’ for the training of workers and the provision of culturally, religiously appropriate and linguistically accessible information. A number of writers and innovative service providers have argued for the development of new models of treatment, including ‘transcultural therapy’ (see Kareem and Littlewood 2000), and better provision of sensitive forms of family and psycho-therapies. There are also special needs in dealing with refugees and those who have suffered torture and victimisation including attention to the effects of racial harassment or violence.

Increasingly, it seems that research is supporting the belief among people from minority ethnic groups that they are treated differently when it comes to accessing mental health services. Every review of services and diagnoses shows that extremely few people from Asian origins are admitted to, or receive mental health care of any kind. This may be because of language problems, and the lack of appropriate counselling services, or because different descriptions of mental distress are not recognised by medical staff. On the other hand, people of African-Caribbean origin are heavily over-represented among those receiving treatment under ‘forensic’ (police-originated) sections, diagnosed as psychotic, and given high-tariff interventions such as being kept in locked wards and treated with invasive drug therapies and electro-convulsive therapy. Equally, however, there are very few clients from this background being treated for depressive or neurotic illness or receiving counselling. This does not seem to be because of a lack of stress and mental distress among these communities, nor can it be fully explained by their use of alternative means of support such as their religious organisations, families and friendship networks (Nazroo 1997). It does seem that UK-trained practitioners are less able to recognise the signs, or are less prepared to diagnose these forms of illness, although the tendency reported in the 1980s for most young black men to be certified as suffering from psychoses (or described as ‘black and dangerous’) does seem to have reduced recently (Shaw et al 1999).

Nevertheless, certain stereotypes remain prevalent, and affect the ability of people from minority origins to obtain the necessary help and support, even though it now seems that the prevalence of mental health needs is at least similar across ethnic groups, and that needs may be higher in some minority groups. This may be wider, and of greater significance, than the historic focus on schizophrenia and psychoses among African-Caribbean people, and on para-suicide and eating disorders associated with ‘cultural conflict’ among South Asians. At the least, it may be time to consider the apparent lack of diagnoses of personality disorders (all minorities), self-harm and alcohol dependency (African-Caribbean), and schizophrenia (Asians). At the same time, consideration should be given to the supportive role (as well as the potential for conflict) inherent in religious and cultural communities.

Sexual health And HIV/AIDS-Related disease

There is little evidence on the needs of minority groups for sexual health-related treatment, but papers have caused controversy by drawing attention to the number of people from Africa attending for AIDS-related conditions. Anecdotally, there appears to be a low uptake of many services, and a need for outreach and patient education programmes (Fenton, Johnson & Nicoll 1997). It is also argued that Asian cultural norms have, so far, been protective, and delayed the age of sexual activity at least among South Asian females (Fenton & Wellings 2001). Other pressures, including socio-economic effects and cultural exposure, may explain the apparently higher rates of sexually transmitted disease among young people of African-Caribbean origin. It is also suggested that there are different cultural reactions to various means of fertility control (and sexual protection), notably against barrier methods, and that, possibly because of previous bad experiences, many people of minority origin resist attendance at family planing and genito-urinary clinics. Such problems are caused, and accentuated, by stereotypes. Advice needs to be mediated by understanding of cultural and family dynamics, and of the historic effects of stereotypes of sexuality.

It may be pertinent to mention, in this section, the issue of circumcision. This has, historically, been practised in certain cultures, and in some is still prevalent among women, However, following the Prevention of Female Circumcision Act (1985), bringing Britain into line with most other European countries, the latter practice, also known as ‘female genital mutilation’ or clitoridectomy, is illegal. However, cases have been reported in Britain, and the practitioner may encounter cases where it has been requested, or carried out on an ‘amateur’ basis (Arbesman et al 1993). More worrying still have been cases when a young women has been taken abroad, sometimes forcibly, for the procedure to be carried out. Many other European states permit clinical and social work staff to intervene and prevent the removal of a young person from the country if this situation is feared. In some major cities, particularly those with substantial populations (often of refugee background) whose origins are in the ‘Horn of Africa’ (Sudan, Somalia), there are community-based groups seeking to educate women against this practice. For young males, however, the operation is relatively simple and non-threatening, and was once common in England. Now, most of those seeking it for non-clinical reasons are adherents of Judaism or Islam. Certain health authorities and Trusts are willing to support provision of this service, which may be viewed as a religious obligation.

Diseases and conditions which are less common among minority ethnic groups

As we have seen, there are a number of diseases which may be said to be 'ethnic specific'. That is, their prevalence is closely linked to the existence of a specific gene in a population, which transmits the disease. Some of these are relatively common, others are very rare. Not all of the diseases which are so described are confined to, or commonest among, people of ‘minority’ ethnic origins. Most of these genetic variations have some environmental advantages as well as drawbacks - such as a greater resistance to falciparum malaria in people of West African origin with the Sickle Trait. There are also many rarer genetic conditions, linked to different ethnic groups, such as 'Huntingdon's Chorea', all cases of which can apparently be traced to a single English family, even though it is now found in South America and the United States. One of the better known is Tay Sachs disease, associated with people of Jewish descent (and nearly always fatal before age 5); while G6PD (Glucose 6 Phosphate Dehydrogenase deficiency) means that sufferers, mostly of Mediterranean origin (and some Asians), have an allergy to pollen from the broad bean family. G6PD may also lead to an enhanced sensitivity to certain anti-malarial preparations: check with pharmacists or other expert sources when giving advice on travel medicine to affected people. Cystic fibrosis was once thought to affect only people of White European (but not South African) origin, but it has recently been realised that this stereotype has led to a few cases among people of South Asian background being missed, or not offered the necessary support (Spencer et al 1993). People of North-European background, particularly those of Swedish and Dutch origin, carry the Factor V Leiden gene. The main implication of this is a reduced clotting time, and hence raised susceptibility to Deep Vein thrombosis (DVTs), especially among females using the oral contraceptive pill. This fact reminds us that everyone has an ethnic origin and identity, which may have clinical relevance!

Much research has been done on the global distribution of multiple sclerosis. Generally speaking the frequency of multiple sclerosis increases with the distance of the surveyed area from the equator (Limburg, 1950). White people from Northern and Central Europe are much more susceptible to multiple sclerosis than black people in Africa (Shepherd and Downie, 1978, Georgi and Hall, 1960). Migration studies of ethnic groups from high risk to low risk areas have shown that immigrants have a prevalence rate intermediate between the country of origin and the host country (McCall et al, 1969, Baum and Rothschild, 1981). A number of hypotheses have been advanced to explain this, including exposure to sunlight and consumption of fish-oils in the diet. The point is, really, that one should not regard ‘ethnic-specific’ disease patterns are peculiar or indicating the superiority of any one group over the other. One of the earliest racialised explanations for ‘Down’s Syndrome (Learning Disability’) was based on a theory that white ‘races’ had evolved furthest from their original ancestors, and that ‘Mongolism’ represented a slip back ‘down’ the evolutionary ladder. (For interest, read the original article on this which was recently reprinted: Down 1995). Hopefully, these examples will demonstrate that there are many factors affecting a person’s susceptibility to a disease, of which their genetic inheritance and ancestry are only one. All communities, through their opportunities and preferences for marriage and child-bearing, affect the likelihood of different diseases affecting their descendants.

Exercise 2.5 Group or individual activity (formative or summative assessment)

-Select any field of health care that is most appropriate to your interests and specialism (for example, Child health vaccination, or Adult - Mental health).
- Make brief notes from the data given above and any references you can find in the reading list for this module, about the ways in which patterns of disease and health need might be different for a minority ethnic group which is locally important (in rural areas, this might be travellers/gypsies, or refugees and asylum seekers).
- Draw up some plans for health promotion work around this topic with the group you have identified, linking these to the local Health Improvement Plan and strategy, in the light of any needs identified in recent public health reports for your area.
- Contact the local health promotion unit or a community health trust and ask what their policy and practice is, what they do specifically to meet the needs of this group, and whether they have any resources for heath promotion in respect of this disease condition which include particular attention to the issues of diversity of need.
- Make a presentation to the class or a poster for display and if you can, try to discuss your ideas with a local community group representing your target audience!

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