According to Andrews (1999), Sir Edward Tylor a British Anthropologist, is credited with defining the term ‘culture’. Andrews (1999) explains culture as representing a way of perceiving, behaving and evaluating the world. It refers to the complex whole which includes knowledge, belief, arts, morals, law, custom, politics, technologies and any other capabilities or habits acquired by people as members of a society; including those pertaining to health and illness.
The term ‘transcultural nursing’ was coined by Dr Madeleine M Leininger in the mid 1950s. It was only in the 1970s that the theory began to attract more widespread interest and concept development. It remains a relatively new area of study in the United Kingdom (UK).
Transcultural nursing is a term used to describe a speciality within nursing focussed on the comparative study of different cultures and subcultures, which are examined in respect of their health and illness values, caring behaviour and beliefs. According to Andrews (1999), ‘the goal of transcultural nursing is to develop a scientific and humanistic body of knowledge in order to provide ‘culture-specific’ and ‘culture-universal’ nursing care practices’. Leininger (1991) defines ‘culture-specific’ as values, beliefs and behaviours unique to a particular cultural group and ‘culture-universal’ refers to commonly shared values that are similarly held amongst differing cultures. Whilst Leininger’s (1991) sunrise model of cultural diversity and universality is by far the most popular conceptual framework, many others exist.
The importance of transcultural nursing is ever growing due to the diversity, which characterises our national and global populations in relation to ethnicity, national origin, sexual orientation, education, social status and physical ability. Lea (1994) cites a study by Stockwell (1972) who observed interpersonal relationships between nurses and patients, in general hospital wards in the UK. The research revealed that patients with different cultural and religious backgrounds were less popular than patients with the same cultural beliefs as the nurses. It is thought that language barriers, cultural difference in pain response and sick role behaviour may have contributed to these patients being less popular with the nurses. Similar observations have been made in many more recent studies observing communication patterns (Lea 1994).
Practitioners need to be aware of their own ethnocentric tendencies (i.e. making value judgements about other cultural groups using your own belief system) in order to avoid cultural imposition (i.e. trivialising the beliefs of patients which may be different from your own). Lea (1994) adds that nurses need to be aware of their own attitudes towards health and illness in order to react non-judgementally when confronted with lay ideas of health and other cultural systems.
The rather controversial term ‘cultural competency’ has been used to describe the process of striving to effectively interact with individuals, families or whole communities from a diverse cultural background (Andrews and Boyle, 1999). The term is problematic because it assumes that a ‘culturally competent’ nurse has a universal understanding of all cultures and it is clearly impossible to know about all the different culturally based beliefs of the patients that may be encountered during one’s career. Nevertheless, it is reasonable to suggest that nurses can master the skills of cultural assessment and learn about some of the cultural values of patients where cultural diversity exists (Andrews and Boyle, 1999).
This essay will concentrate on describing the health needs of Gypsies in relation to the way in which they interpret well being and illness and need for the planning of culturally appropriate service planning to accommodate this. In particular, the issues discussed will focus on the specific needs of women in relation to maternity services, family planning and child health.
The terms Gypsy and Traveller will be used interchangeably in this essay. However, the health needs of Gypsies in relation to this discussion will focus on the largest of the Traveller groups in the British Isles known as the English Romanichal Gypsies. The following discourse excludes discussion concerned with health issues relating to New Age Travellers.
There are many definitions of the term’s traveller and gypsy. According to Vernon (1994), Traveller is an overarching term used to describe people who lead a nomadic or mobile lifestyle, which includes groups such as Romany Gypsies, Scottish/Irish Tinkers and New Age Travellers.
The ethnonym ‘Gypsy’ is used to refer to a range of ethnic groups across the world who tend to identify themselves as ‘Romani’ and speak dialects of the Romani language, which is of Prakritic origin. It is also used to refer to some Traveller groups who deny Romani connections but share aspects of Romani culture and history with Romani-identifying groups (Acton 1974). Furthermore, Gypsies are recognised as a racial group by the Commission for Racial Equality and as such they may not be discriminated against.
McKee (1997), in his account of the history of the Roma people, describes the persecution of Gypsies which includes centuries of slavery, mass extermination in Nazi camps and the institutionalised racism which is still endured today. Many authors (e.g. Acton et al. 1998, Thomas et al. 1997) acknowledge that against this setting of persecution and marginalisation, it is unsurprising that health policy makers and researchers have largely ignored the health needs of Gypsies. Furthermore, current health policy such as the Department of Health’s ‘Saving lives: our healthier nation’ (1998) places particular emphasis on reducing inequalities in health and targeting socially excluded groups. However, it is ironic that the key health policy document ‘Reducing health inequalities: an action report’ (1999) does not mention the health needs of Gypsies, which is perhaps a reflection of the degree to which they are socially excluded.
McKee (1997) remarked that a search of the literature yielded more research concerning the gypsy variant of the drosophila fruit fly than on the health of Gypsies. Despite much media attention in the last few years relating to the influx of asylum seekers from central and eastern Europe, little new research has been commissioned in the UK to progress our understanding of nomadic groups. In preparation for completing this assignment, searches of Medline and Healthstar using the terms ‘Gypsy’ and ‘Traveller’ produced a relevant reading list of less than thirty examples of original research, many of which were conducted in the 1970s and 1980s.
Many of the studies which are available, suggest that Gypsies have a poorer health status and higher mortality rates than the general population (e.g. Feder 1989, Pahl and Vaile 1986) and the needs of women and children in particular, are frequently discussed in the literature.
A survey by Linthwaite et al (1983) of 265 mothers showed a still birth rate among Travellers 19 times greater than the national average and 12 times that among women in Social Class V. The rate of congenital malformation was 500 per 10,000 live births against a national average of 160.7 per 10,000 live births. In addition to this, infant mortality was five times the national average, with twice as many falling into the low birthweight category of 2.5 kg. Pahl and Vaile (1986) made similar findings in a study of 263 mothers with 814 children which revealed that mothers under the age of 30 years had a perinatal mortality rate of 22 per 1000 births and an infant mortality rate of 26 per 1000 births. A more recent epidemiological study by Van Cleemput and Parry (2001) also concluded that health status of Gypsies is poor, even when compared with the lowest socio-economic groups. Other studies focussing on adult health found that premature death from cardiovascular disease is more prevalent among Travellers than the surrounding working class population. Smoking is more widespread, and women are more prone to depression and obesity (Crout 1987).
Some (quasi) epidemiological studies have been criticised on the grounds of exaggeration by the Gypsies who have read them and for the unrepresentative samples drawn from the poorest Gypsy groups known to Social Workers and Health Visitors (Acton et al. 1998). Despite the continuing controversy over the extent to which the differences in health statistics between Travellers as a group and the rest of the population are real or just statistical. It is clear from the literature, that some Gypsies have to endure appalling living conditions, which undoubtedly contributes to the health needs of the group and makes access to health care more difficult.
The difficulties that Gypsies now face in trying to live their nomadic lifestyle have increased since the introduction of the Criminal Justice and Public Order Act in 1994, which made parking caravans on the roadside even for short periods, a criminal offence. In addition to this, the repeal of the Caravan Sites Act of 1968 meant that Councils were no longer obliged to provide or maintain ‘authorised camp sites’ and also have the power to close existing sites if they so choose.
Qualitative research focusing on health concerns suggested that forced changes to travelling patterns and the related impact on lifestyle may have a detrimental effect on quality of life and mental health (Van Cleemput and Parry, 2001). Furthermore, the conditions on authorised and illegal sites has long been considered an important factor relating to the morbidity amongst Gypsies.
Authors such as Pahl and Vaile (1986) observed site shortages in the mid 1980s and considered the lack of basic amenities such as a clean water supply, sanitation and electricity to be contributory factors relating to the health problems of Gypsies. Furthermore, many of the illegal sites were often situated near busy roads, lacking suitable play areas for children. Pahl and Vaile (1986) noted that 60% of Gypsy mothers reported that sites were blighted by noise from the surrounding factories, difficulty drying clothes, potential disease from roaming dogs, broken glass and the lack of safe play areas.
Other site issues, which affect access to health care services, include the fact that many Gypsies share the same name and post offices refuse to deliver letters to temporary or illegal sites. As Vernon (1994) points out, these circumstances make hospital appointment attendance unlikely even if Gypsies remain settled.
The lack of Gypsy interaction with wider society, has been influenced by many factors including ethnocentricity (from the Gypsy community and wider society) and the mobility of Gypsies. Like access to adequate amenities, illiteracy has had an enormous impact on the Gypsy community in regard to accessing adequate health services. The nomadic lifestyle of Gypsies has meant that access and continuity of education has been greatly reduced which has resulted in many Gypsies never learning to read or write. For decades, Traveller children when they have been able to get to school, have been labelled as difficult learners or disruptive and excluded from mainstream education. It is only in the last decade that specific schemes have been established with the aim of providing greater access to education and health care (Tyler 1993).
Several studies (e.g Acton et al. 1998, Crout 1987) suggest that television programmes are the most accessible/popular way of gaining health information for Gypsies. But they warn that the sensational nature of some programmes and inaccurate media portrayal can lead to misunderstandings and mistrust of health care staff. A notable example of this was the reporting of pertussiss vaccine damage and the decline in the number of immunisations.
The lack of adult literacy amongst the typical Gypsy community makes promoting health a challenge. Many health care staff working in a community setting, cite the difficulties of promoting family planning, development checks for children, routine check ups and immunisation to a Gypsy community.
The difficulty of both verbal and written communication with the Gypsy community is compounded by the lack of understanding in regard to the Gypsies’ explanatory model of health and illness by health care workers.
To Gypsies, good fortune and good health are closely associated. Therefore, those who enjoy good health have been blessed with good fortune, those who are ill have lost their good luck. Individuals can influence their own fortunes and their actions either promote wellness or cause illness. The Gypsy philosophy of purity and impurity is closely related to the notion of good and bad fortune (Sutherland, 1992). Marime, meaning polluted, defiled or unclean is used to indicate ‘pollution’ of a physical or moral nature. Gypsies consider the lower half of the body to be unclean (in particular the genitourinary area and its secretions and emissions) and as such, separate soaps and towels must be used to ensure body separation and ‘cleanliness’. The consequences of marime are possible rejection by the community (social isolation is a grave punishment) and the belief that serious illness could occur.
The pollution concept and body separation has been discussed in detail by various authors (e.g Sutherland, 1992, Anderson and Tighe, 1973). The pollution concept has been used to explain why Gypsies often fail to demonstrate positive health behaviour in relation to family planning, antenatal care and immunisation. Lawrie (1983) in her account of establishing a specialist Health Visitor service for a Gypsy community in London, highlighted the problem of promoting contraception amongst Traveller women. Lawrie (1983) observed that because of the strict rules around female modesty and sexual taboos, mothers were reluctant to pass on information concerning female sexual health (e.g childbirth, sexually transmitted diseases) and many adolescent girls were unprepared for the onset of menstruation. In addition to this, promoting the use of contraceptive devices was problematic given the concept of body separation and the impurity of the lower half of the body (e.g the sheath and the diaphragm are considered to be impure and ‘non-Gypsy’). Oral contraceptives and other methods of contraception such as depot injections have also been used with limited success because of the lack of compliance and inadequate access to GP practices for repeat prescriptions and health checks.
In addition to this, a large family is considered both prestigious and useful because it signifies fertility (to which men attach great kudos), wealth and health (Sutherland, 1992). Plus, there are other advantages to having a large family, such as the contribution to the economy (children work sorting scrap and caring for siblings from about the age of eight) and the supportive network in times of hardship or crisis. Therefore, the notion of family planning is often considered to be counter-productive by the Gypsy community.
Similarly, the poor uptake of immunisation programmes for adults and children has also been attributed in part, to the lack of literacy and thus an inability to understand the health facilities available (Batstone, 1993) and because immunisation is considered to be the introduction of something ‘dirty’ from the outside into the ‘pure/clean’ body. It is perhaps interesting to note that in a spectacular display of cultural insensitivity, many Gypsies where forced at gunpoint to comply with immunisation programmes, under Communist rule in Eastern Europe. Thus a 99% completion rate for hepatitis and tuberculosis vaccinations was recorded (Neff-Smith et al, 1996).
Again, research exploring women’s health issues revealed that Gypsy women are reluctant to attend clinics for routine check ups and cervical screening (e.g Pahl and Vaile, 1986). This behaviour stems from the concept of marime and the modesty rules concerning genitalia. However, Acton (1998), argues that gender differentiation and the degree to which women are seen as ‘unclean’ varies from one Gypsy group to another.
Instead, it is considered by several authors (e.g Batstone, 1993 and Lawrie, 1983) that the inequality in access to services such as screening is due to the mobility of the Gypsy population, lack of understanding in regard to the physiology of the human body and because Gypsies differentiate between the causation and treatment of diseases according to whether they are considered to be Gypsy diseases or ‘Gaje’ (non-Gypsy).
Sutherland (1992) described the rather complicated notion of disease differentiation. Where some diseases are considered to be exclusively ‘Gypsy’ and others are ‘non-Gypsy’ in origin. ‘Gypsy’ diseases can only be cured by the ‘Drabarni’ (one of the female elders in the community) and have no connection with germs and therefore cannot be treated with Western medicine. There is a degree of overlap with Gypsy and non-Gypsy diseases, but the causes are different and therefore Western medicine is not necessarily at odds with the Gypsy folk system of medicine. The Gypsy explanatory model suggests that serious illness is caused by a specific, disease carrying spirit called ‘Mamioro’ (the Devil).
Lawrie (1983) in a discussion of Gypsy women’s attitudes to maternity services suggests that like other aspects of their health behaviour. Attendance at antenatal sessions is dependent on the geographical, financial and organisational issues associated with getting to the appointment. Traditionally, the booking of a bed for delivery has been left until very late because a woman is unlikely to stay in one place long enough to be afforded continuity of care.
Many Health Visitors (e.g Tyler, 1993) have reported specific health needs in relation to Gypsy children who are prone to infectious diseases due to overcrowding, accidents, chronic problems due to poor follow-up (e.g limb deformity post fracture) and treatable conditions which go undiagnosed (e.g diabetes, perforated ear drums) because of lack of contact with health services.
Much work has also been undertaken in the last 20 years by Health Visitors, to try and negotiate new patterns of behaviour concerning the weaning of babies and the use of formula milk by Gypsy mothers. This cultural care repatterning has focussed on introducing the idea of adequate sterilisation of the milk bottles to reduce the incidence of gastrointestinal problems in young infants. Lawrie (1983) describes how she has observed many child-rearing practices which she considers to be in conflict with her values, beliefs and professional opinion concerning feeding practices but only intervened if she considered practices to be overtly dangerous.
The degree to which Gypsy women require support in relation to child welfare is illustrated by Anderson and Tighe (1973) in their account of how a Gypsy woman applied wart solution to the skin of her child resulting in second degree burns. Lawrie (1983) described how mothers in a London Gypsy community thought that bottle sterilising units held special powers and therefore did not realise that sterilising fluid was necessary to thoroughly cleanse the baby bottles.
Diet is another important factor to consider in relation to women’s health. Many Gypsies take a diet with a high fat content and are known to have a high incidence of hypertension, raised cholesterol, diabetes and clinical obesity (Sutherland, 1992). Again, this correlates with the Gypsy notion of good fortune and wellness. In the Gypsy community, fat people are considered to be healthy and prosperous and thin people unhealthy and poor. Research suggests that the impact of this behaviour on health and the extent to which it can be successfully modified depends on clear instruction and instant benefits (Sutherland, 1993).
Gypsies tend to display an unrealistic faith in non-Gypsy treatments and fail to comply if rapid relief from the symptoms is not achieved (i.e. failure to complete a course of drugs or attend follow-up treatments). This behaviour again, based largely on the explanatory model of good fortune and fate, demonstrates that many Gypsies have an external locus of control in relation to their health and the extent to which they are responsible for maintaining good health. An alternative explanation suggested by Helman (2001), is that due to the increasing ability of modern medicine to determine disease without illness (e.g a routine blood test reveals raised cholesterol levels and the presence of disease, but the patient does not feel ill). This may explain why there is a high level of non-compliance amongst the Gypsy community in regard to following treatment plans and keeping to appointments.
Undoubtedly, the family unit is very important to Gypsies and serves a protective function in regard to the health of its members. For Gypsies, the illness of an individual within a family assumes a wider social importance. The coming together of Gypsies when someone is ill is partly mandated by custom and a genuine expression of concern for the sick relative and their immediate family. As Leininger (1991) points out, ‘care has been essential for human survival, development and to face critical life events such as illness, disability and death’.
Boyle (1999) cited in (Andrews and Boyle, 1999) describes the function of the family in relation to learned health behaviours as playing ‘an important role in the transmission of cultural values and learned behaviours that relate to both health and illness. It is in the family context that individuals learn basic ways to stay healthy and ensure the well being of one’s self and family members’. Furthermore, the family is usually considered as the most important social unit and provides the social context in which illness occurs, is resolved and within which health promotion is maintained.
Sutherland (1992) suggests that the gathering of Gypsies to care for a sick relative is one of the strongest values in Gypsy culture. It is essential that health care professionals are aware of these basic beliefs and behaviours in relation to sickness and health, for successful interaction with the Gypsy community. It also explains why when a member of the Gypsy community is sick, numerous relatives arrive at the hospital or accompany the individual to the doctor’s surgery (Lehti and Mattson, 2001). Health care professionals often consider this behaviour to be unnecessary and disruptive to the care of the patient because it is at odds with their own value system.
Furthermore, the ‘collective view of health’ which has been observed in Gypsy communities also includes the sharing of symptoms and treatments. Lehti and Mattson (2001) in their study of Gypsy women attending General Practitioner (GP) clinics noted that the women seldom attended alone and were likely to be accompanied by several friends (fictive kin) or relatives. They often presented with the same symptoms and responded best to treatment if they were given the same number of appointments and the same therapy (e.g. medications). Similar findings have been observed by Sutherland (1992) who noted that some Gypsies share prescribed medication with members of the community exhibiting the same symptoms. This behaviour has been explained in part by the lack of education and literacy amongst the Gypsy women but it is also linked with the explanatory model of folk tradition. Gypsies associate good fortune with good health and often attribute the success of a treatment to the ‘mystical powers’ that the therapy has. Furthermore, it is evidence that Gypsies like many other family groups maintain a ‘family script’ of myths and folklore passed down from generation to generation (Helman, 2001).
In response to the findings published in Linthwaite’s 1983 report, health authorities in several regions across in England commissioned projects in the 1980s, to provide specialist practitioner services to Gypsy communities (e.g Lawrie 1983, Tyler 1993, Batstone 1993). The focus of the projects was to provide ‘on site’ health advice, basic treatments and examinations (e.g child health and developmental checks) and most importantly, the provision of a high quality, holistic health scheme tailored to suit the needs of the Gypsy community.
Indeed, many of the Health Visitors involved in facilitating these health screening programmes were accepted by the female population (and tolerated by the male!) and made significant contributions to the development of services which were sensitive to the needs of the community. This included the development of partnerships with other agencies (e.g local education authorities, social services, welfare rights etc) to provide specific ‘on site’ services previously unavailable to the Gypsy community such as ‘Play Bus’ sessions, mobile library services and dedicated educational tuition for the children.
Specific concerns such as continuity of care were addressed by introducing ‘patient-held’ records which meant that when a Gypsy family moved away from the area, a record of the interaction with the GP could be passed on to the next Practitioner. In addition to this, special clinics were held at the camp sites by Health Visitors and local GPs to provide basic health screening to the Gypsy community (e.g vaccinations, health checks etc) and special arrangements were made to provide easier access to clinic appointments at the hospital so that the Gypsies could benefit from antenatal care sessions and other services such as dentistry and podiatry.
It is clear from the successes of these projects (e.g reportedly high levels of immunisation, baby checks and trust between the practitioner’s and the clients) that the specialist services were implemented in a culturally sensitive manner. Furthermore, the growth of interest in health coincided with a growth of the women’s movement among Gypsies in the late 1980s. In the last ten years, Gypsy women have become involved in international Gypsy affairs which was previously the domain of men. In 1993, the National Association of Gypsy Women (NAGW) appointed a working party on health which produced its first report in 1994. The report outlined the need for health education materials suitable for Gypsy culture, acknowledgement that site evictions contribute to poor health and clear advice on immunisation. It has been suggested that the role of the specialist Health Visitor influenced the NAGWs decision to advocate the development of Gypsy Community Worker roles to facilitate discussion and promote health.
Acton et al. (1998) suggest that in order to develop health education policy which is really culturally sensitive, then we need to stop treating Gypsy women as victims and start supporting them to become effective change agents within their own community. They suggests that future research should fully include Gypsies and Gypsy organisations and he acknowledges that at present, there are large gaps in our knowledge of Gypsy populations and the need for health provision. Especially in reference to education provision, which received grants under the 1989 Education Act and has subsequently produced relatively reliable national statistics on resources and outcomes.
To summarise therefore, the Gypsy community are characterised by their high incidence of morbidity associated with lifestyle and cultural beliefs. Many members of the community have a decreased level of access to educational and health care services due to their nomadic tendencies. The specific health needs of the Gypsy communities are attributable to the environmental conditions which they have to endure (i.e. poor sanitation, overcrowded living conditions) the lack of access to acceptable levels of health screening (e.g uncooperative GPs and local hospitals) and the cultural beliefs that they hold (e.g folk system medicine and pollution concept etc).
Much of the research conducted in the 1970s and 1980s regarding the health status of Gypsies is still relevant today and accurate national figures estimating the number of Gypsies in the UK do not exist.
Gypsies have unique health needs which are borne out of lifestyle requirements and other cultural beliefs which have been addressed in some of the regions by the introduction of specialist practitioner roles. Whilst these projects have been successful, it is acknowledged that the impact of this work is limited by the fiscal resources available and much more work needs to be done to explore the health needs of the UK Gypsy population in a manner which is inclusive of the community members and respects cultural values or beliefs. Nurses and Health Visitors have an important role to play in this process and bring with them the opportunity to embrace the development of future health services for the Gypsy communities, using a framework of transcultural nursing theory.
References:
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