Louise and her husband Bob, both aged in their sixties, worked and lived on a farm which had been passed down to Louise by her parents. Bob had grown up on a nearby farm, and so he had a wealth of experience in working the land, as did Louise. Louise and Bob had three grown children, two girls in their thirties and a son, Des, who was 23. Des still lived at home, and helped them to work the farm, but the two girls had moved to the city and were both settled there now. Louise and Bob were starting to think about taking life a little easier. It had been decided that Des would take over the farm at some stage in the future, and they looked forward to supporting him in this. Financially, though, things were not looking good, with the farm being hit by the worst drought in living memory for the past eight years. Also, the family was just starting to recover from the trauma which occurred when Louise was diagnosed with breast cancer.

It is important to define what we mean by ‘rural’ before we talk about the issues that can affect the experience of illness for people who live in the country, like Louise and her family. This is because definitions of rural have important implications for the way health services are provided throughout Australia, and the range of services that are available to cancer survivors and other people with chronic illnesses. Rural Australia also has distinct geographical, cultural and social characteristics that influence the health and psychosocial wellbeing of the people who live there, and the ability to provide health and other services consistent with their needs (Coakes & Kelly 1997).

Around one-third of Australians live away from major cities (Australian Institute of Health and Welfare 2003). Although many attempts have been made, it is not easy to define rural communities (Reid & Solomon 1992). It is well recognised, however, that rural Australians are geographically isolated because of the vast distances and dispersed populations which are a feature of rural Australia. For this reason, there are currently two definitions frequently used in Australia.

The most common definition is the Rural, Remote, Metropolitan Areas Classification (RRMAC) developed by the Department of Primary Industries and Energy (Department of Primary Industries and Energy 1991). The RRMAC uses a combination of population size, distance from major services or towns and population density to categorise communities (Reid & Solomon 1992). For example, some communities are a long way from the nearest city in terms of geographical distance, but are large enough to sustain a range of services like schools and tertiary health care. Other communities might be closer to a city, but are so small that residents have to travel to access major services.

The second, and most recent, definition is the Accessibility/Remoteness Index for Australia (ARIA) (Department of Health and Aged Care 1999). The ARIA system is an accessibility index, based on how easy it is for people to reach certain services that are considered essential, but taken for granted by people living in more populated areas. Unlike the RRMAC, the ARIA uses a geographical approach to determine remoteness, so factors such as the socioeconomic status of populations or population size factors are not assessed (Department of Health and Aged Care 1999). The ARIA classification defines a set of 201 service centres, divided into five categories, distributed around Australia. Remoteness is interpreted as accessibility by road distance from a service centre. A grade of 1 on the ARIA classification means that the community is highly accessible, with relatively unrestricted access to a large range of goods and services and opportunities for interaction. At the other end, a grade of 5 means ‘very remote’, where there is a restricted ability to access (Department of Health and Aged Care 1999).

Regardless, the Brown family, who live 400km from the nearest major centre and only have access to a limited health service and small 10-bed hospital in their local town, are disadvantaged. In terms of isolation, distance, and accessibility to services, their situation and thus experiences of chronic and mental illness are very different to those who live in the city.

Exactly how do the factors typical of rural life affect the experience of illness for Louise and her family? Firstly, there are significant health-related consequences of living outside a metropolitan area. Death rates in Australia rise with increasing remoteness, although this is largely explained by the higher proportions of Indigenous people living in remoter parts of Australia (Australian Institute of Health and Welfare 2003). Mortality rates from heart, stroke and vascular disease are slightly higher in remote areas than metropolitan areas (Australian Institute of Health and Welfare 2003). However, reports relating to cancer mortality between rural, remote and metropolitan areas are conflicting. Indigenous people are less likely to die of cancer than non-Indigenous rural Australians (Australian Institute of Health and Welfare 2000), probably because the health and psychosocial outcomes of Indigenous Australians are so poor that they do not reach an age where they are likely to develop cancer (Australian Institute of Health and Welfare 2000).

Like mortality rates in rural areas, morbidity levels also rise with increasing remoteness from major centres. Relatively poor access to health services, lower socioeconomic status and employment levels, harsher environments and higher occupational hazards explain many of these inequities (Australian Institute of Health and Welfare 2000). In addition, a number of personal risk factors, including higher alcohol consumption, smoking, and lack of exercise, are more prevalent in non-metropolitan areas (Australian Institute of Health and Welfare 2000).

One challenge that is especially confronting for people in rural and remote communities is that of privacy. Health problems which are ‘unattractive’; for example, mental illness, and drug and alcohol problems, may be of particular concern in small communities since maintaining privacy can be almost impossible. Louise says that news of her cancer diagnosis travelled fast, and when she first came home after her surgery, she felt really self-conscious, because she thought everyone was looking at her, trying to work out which breast was ‘real’ and which was ‘the falsie’.

As Louise makes clear, having to travel longer distances for specialist and primary health services is common for rural people in Australia. The time involved in travelling, the costs of travelling, being away from home and family/work responsibilities and accommodation costs impose significant economic and personal costs for rural Australians already burdened by the significant health problems discussed above (Eyles & Smith 1995, Hegney et al 2002, McCarthy et al 2002). In addition, relatively few rural people these days can afford the extra cost of health insurance, and for some, even the cost of fuel for transport to health services can be prohibitive (McCarthy & Hegney 1999). Consequently, even when rural women are faced with breast cancer, they may be reluctant to choose treatment options that involve expensive, prolonged and recurrent trips to a specialist health service.

For example, like Louise, less rural women (34%) in Australia in 1993 had breast-conserving treatment (lumpectomy) as compared to 42% of metropolitan women. Lumpectomy usually requires follow-up radiotherapy treatment, and these figures may reflect the inability or unwillingness of rural women who would prefer lumpectomies to access postoperative radiotherapy (Craft et al 1997). Since radiotherapy services are not generally available in rural areas, rural women who have lumpectomies to treat their breast cancer may need to travel to a tertiary health service, and be away from home for a number of weeks for their radiotherapy treatment (COSA 2001, Hegney et al 2002). Therefore rural women opt for more radical surgery, with serious long-term side effects such as lymphoedema and altered body image, over breast conserving surgery followed by radiotherapy. This preference is also influenced by the enormous financial burden and social upheaval necessitated by prolonged radiotherapy treatment.

Like Louise, many people with chronic illnesses in rural areas have comparatively restricted access to health services that would make their long-term illness experience more manageable. In recognition of this, in 2001, health professionals and consumers from regional and rural Australia gathered in Canberra to consider strategies to address the problem of inadequate services in rural areas for people with cancer. Anumber of key health service delivery issues that contribute to poorer long-term cancer outcomes were identified at the conference. These included (COSA 2001):

Depending on the context in which they practice, such as in a bush nursing post, in a small local hospital such as the one available to the Brown family, in a larger regional centre, or in community health, rural nurses can have a very different scope of practice from their metropolitan colleagues. A rural nurse is likely to be the first health professional immediately accessible to the Brown family because the town only has a visiting medical service. This is an enormous responsibility, as rural nurses are also expected to provide a wide variety of expert health services to other members of their community. Unfortunately, it is well recognised that rural nurses, no matter how willing they may be to provide this breadth of service, are often not educationally prepared to deliver the expert holistic care expected of them (McCarthy et al 2002). This occurs for a variety of reasons, mainly the lack of access to appropriate nursing education and issues of professional and geographical isolation (Hegney et al 1997). Furthermore, rural nurses tend, in the absence of formal education, to learn on the job or teach themselves the skills they need (McCarthy & Hegney 1999). People like Louise and Des, therefore, may not receive the level of psychosocial care they require.

However, many rural nurses spend their entire working lives in the one community, and are therefore positioned to deliver the type of ‘womb to tomb’ care that facilitates continuity of care and a truly holistic perspective (Hegney et al 1997). Given appropriate education and training, these nurses, with their enormous insight into the psychosocial and physical needs of the client and their family, are able to greatly enhance client outcomes. Many talk about the privilege of personally knowing their clients and their family intimately; their ability to adapt their practice to their clients’ well-known psychosocial needs; and the professional satisfaction they gain by following up the long-term outcomes of nursing care (Hegney et al 1997). It is also evident from Louise’s story that their clients greatly appreciate the quality of psychosocial care these nurses are able to give.